PLEASE NOTE – SINCE WRITING THIS BLOG I HAVE CUT OUT PROTOPIC AND ALL TOPICAL STEROIDS AND WISH I HAD NEVER EVER USED THEM. I WENT DRUG FREE IN JAN 2019 AND AM STILL HEALNG. I QUIT PROTOPIC IN APRIL 2019. TO FIND OUT WHY PLEASE READ, “How I got hooked on drugs” here. I have been blogging since Feb 2019 about this journey so visit the TSW tab in the menu bar above or in the TSW Categories in the side menu too.
I AM LEAVING THIS BLOG LIVE FOR TRANSPARENCY AND FOR HISTORIC REFERENCE.
What is Protopic (tacrolimus)
Protopic is an ointment for treating eczema but it’s not a steroid, instead it is an immunosuppressant containing Tacrolimus, so it doesn’t have the negative side effects that even weak steroids have like thinning of the skin and steroid withdrawal reactions.
What’s not to like? This is my review of using it for about 3-4 months and also how much it has changed my life. It really is miracle stuff but if my experience is anything to go by, it is VERY hard to actually get hold of. I am also concerned about how long lasting the effects might be.
My doctor had told me previously that because I only visit him 3-4 times a year with a really bad flare up I didn’t qualify… despite my telling him I had monthly and sometimes weekly flare-ups of angry, swollen, red facial eczema which really was affecting my quality of life. I also knew that my sister had been prescribed it and seen massive improvements in her pretty bad facial eczema and even my little niece had been prescribed it, despite not having very bad eczema at all. I’ve written about this previously in “Eczema, the NHS and the postcode lottery”
My doctor’s response, “There isn’t anything else that can help. What else do you want me do?”
REFER ME TO SOMEONE WHO CAN HELP ME BEFORE I GO DEMENTED! I wanted to scream.
I was becoming a hermit and cancelling appointments and even having to call off work commitments because when my face gets affected it’s like my brain is on fire, my whole head is taken over with this incredible itch and burning, I have to use ice packs to try to dull the pain and nothing seems to help. Steroids didn’t have any effect so instead I was waiting each time, usually 4-5 days, for the reaction to fade with no idea what had caused it. I suspected a mild, delayed undiagnosed allergy but couldn’t ever quite get to the bottom of it. It usually happened after eating out, but more recently even after safe home cooked meals. I didn’t bother to go the doctors because usually I could handle it myself, I knew it would pass and to be quite honest, apart from prescribing me the steroids that I cannot live without on the odd occasion when my skin goes into total meltdown my doctor hasn’t got much else to contribute. I had come to the conclusion that I would only be wasting his time AND mine, so I just got on with life.
Last year I was finally referred to a PROPER dermatologist who has also been able to advise, support and help me with my allergies too. This only happened after there was noone for me to see in the county where I live. Amersham had signed me off their books, they didn’t want to see me, because I was an adult – apparently adults don’t need specialist help anymore.
So earlier this year when my new dermatologist actually SAW one of my flare-ups in action you could say he was shocked. Why hadn’t I told him how bad it was getting? Well I HAD tried but clearly hadn’t got through to him. And I was just continuing on my own, I was coping, even the flare-up he saw would pass pretty soon and wasn’t as bad as some. I could cope, but I was struggling.
He prescribed Protopic. I haven’t looked back.
The way you use it is to start with the 0.1% tube and apply twice a day, morning and night. That’s it. Simple. You do need to get your skin fairly clear before starting to use it, which may mean a short course of steroids and careful eating, but then you’re away.
There is a whole list of possible side effects, one of which being a burning sensation, which did concern me. I was thinking, I’m using this to get rid of my burning red face so what would I do if it burned my skin?
For me there was no burning on application at all. If you do experience any burning, apparently it wears off within minutes.
I am a fairly short way into using this so I’m not quite sure how long I will use Protopic for, for the time being I am continuing on the larger dose, because when I try to reduce the dose to using the lower percentage the skin flare up begins to creep back on small parts of my face, usually my chin first. So I up to the 0.1% again. I do want to reduce the dose as my sister has not got her skin to such a healed state that she only uses Protopic on occasions, not every day and actually pretty infrequently.
So are there any real side effects?
- The burning or cold mask feeling – What I do experience is a very odd feeling if I get cold, hot, drink alcohol or sit in the sun. All of these things make the skin on my face feel like a very strange, kind of cold creeping mask. It feels like it’s burning around the edges of the mask. A very strange sensation. I always think my face must be bright red but when I check in a mirror it isn’t. Very weird.
- Drinking alcohol – I have found I drink a lot less alcohol because I do not like the feeling at all. Probably not a bad thing, as overdoing the booze is never a good thing for eczema skin.
- Facial flushing – I have also experienced a few incidents where my whole body, including my face have glowed red, like really bright red. I have looked down at my hands and thought, what the? It usually happens if I’m hot, bothered of stressed out. So far it has always just passed, slipped back to normal and I wonder whether it ever even happened? This never happened before Protopic, not so randomly and for no reason. Wine with dairy in it can make me go bright red all over too.One other thing that can happen, is that I’ll be in front of a mirror, either washing my face or applying emollient and my face will immediately go bright red. This is not when I’m putting on Protopic but even more interestingly, it goes away before my very eyes. It is almost as if the warmth of applying moisturiser or washing my face triggers this reaction. Then it’s gone.
- Avoid the sun – I cannot sit in the sun even for a few seconds. Even a very weak sun makes my facial skin burn like blazes, I just feel I have to get into the shade. Protopic does come with a warning about skin cancer though my dermatologist said this was such a low risk and that as long as I stayed out of the sun I’d be fine. Fat chance of ever sitting in the sun again to be honest, it feels like someone has a blowtorch pointed at me.
- IBS – This could be completely unrelated but since using Protopic, whilst my face is transformed, my stomach is wrecked. I have had such bad IBS, stomach pains, flatulence and bloating which I am working at controlling. Now this could be totally unrelated, but could it be a coincidence? Could the fact that my immune responses which had previously burst out on my face causing hives, burning, swelling, eczema and itching were now happening in my tummy? This is listed as one of the side effects in the literature but since I am prone to this anyway I’m not altogether sure if there is a link. I am pretty sure it was foods that were causing my facial skin problems though I have never got a doctor to confirm this nor found out what was causing it laterly. I know dairy, celery and tomato do it in a big way but I’ve cut those out so what is now? I’ve been trying to work this out by doing a sort of elimination diet but so fare I haven’t done it scientifically enough.
I have also read that prolonged use it not advisable, but what does prolonged mean? At the moment, when I try to reduce the dose, after a few days my chin and corners of my mouth begin to revert back to the sore, itching red raw state I am so desperate to be rid of. What if, when I next visit, I am told I can no longer use Protopic? I’m pretty sure my symptoms will return, so is this then just a really nasty trick, to remind me what my life might be like and then snatch back the freedom, the joy, the pure ecstasy of waking and getting on with life without worrying about how my face looks. Day in day out fighting through the pain and uncertainty and the looks from people who are aghast that I could even consider going out looking like that… the things people say, but that’s another blog altogether.
What else might you need to know about Protopic?
I asked my doctor a few questions about using Protopic and this is what he said:
Q1) Could Protopic work on the rest of my body?
A)“Protopic would work elsewhere, but you should make sure any infection is controlled first. See your GP for more.”
This kind of conflicts with some of the stuff I’ve read, that in fact, Protopic works better on the face and shouldn’t be used all over the body, but instead in moderation, only where eczema is really bad.
Q2) How long should you use protopic and how often?
A) “Fine to use long-term; no real risk of thinning; need to be careful in sun; I would stick to the stronger 0.1%; I’m happy you using up to about 60g / week.”
Right so this directly conflicts with what I’ve read online. I know you shouldn’t believe everything you read online but I was reading sources I would trust… I will need to look into this more. Great news if I can just keep on using this stuff because it’s incredible, but conflicts with the advice my sister was given and she has managed to wean herself off Protopic in about a year.
Q3) Could I stop using it on my face or should I continue for a while longer with the weaker strength? If I stop using it will my crazy red face return?
A: “If skin on face controlled you don’t need to use; there are then 2 options 1) use as and when or 2) use proactively i.e. 2/week for 3-6 months e.g. Sat & Sun even if no eczema as this helps to prevent and reduce flaring”
What do I think about using Protopic?
I think it’s magic. I cannot imagine not being able to have it now, my skin is amazing. I have been getting so many compliments on my skin, something that has honestly NEVER happened before, except after a really bad flare-up when it was semi healed. I still don’t quite trust it and have to keep checking mirrors and wonder if I’m actually going through early menopause – is that what those hot flushes are really like? I can put up with the IBS if I can have this skin. I love it.
So has anyone else used it? I’d love to hear how you got on? Please post a comment and also let me know if you too have struggled to get hold of it.
Further reading
http://eczemaexcellence.wordpress.com/2012/11/27/protopic-paranoia-and-obsession/
Click here for more information about Protopic
So glad this is helping you Ruth. I was intrigued so looked it up in my usual nosy manner! I like to see what the mechanism is – it is an anti-inflammatory cream for short-medium term use, quite new from what I can see. Alcohol and temperature sensitivity is commonly seen with use. Couldn’t see anything about IBS symptoms though and the ingredients are quite benign from an allergy point of view. It does encourage infection apparently but this is usually localised so doubt it is causing any gut changes directly. Readers might find these sites useful – the meds.org one is very detailed about trials, side effects, use etc especially. https://www.medicines.org.uk/emc/medicine/8816 and http://www.webmd.com/skin-problems-and-treatments/eczema/topical-calcineurin-inhibitors-for-atopic-dermatitis. Good luck with it!
Hi Micki, yes it does seem to be helping me massively. For the first time IN MY LIFE, people have commented on now good my skin looks. I am struggling with the compliments because I am not good with them at all. Still not used to actually looking in a mirror and not seeing red face. I have avoided mirrors, windows ect. for so many years. But I do worry it will all come back when I finish the treatment. Not sure how long you should use it for. Yours with clear skin and loving it, Ruthx
Hi Ruth I have an Allergy to YEAST that was helped and had very similar symptoms.
I avoid Bread, Booze (wine, Beer, cider etc excepy gin and vodka), yeast extract (gravy bovril etc), and anything fermented (e.g. MSG)
Thanks for your comment Robert. So are you saying that you can drink gin and vodka? But not other yeasty booze? I don’t consume much with yeast but am partial to the odd beer or glass of wine…
Hi Ruth, I notice this thread is a few years old now so not sure if anyone will see this. I hope your skin journey is on the mend and you feel a lot better. I just wanted some advice as getting myself in a bit of a state to be honest. For 6 weeks now I have had burnt swollen lips (I woke up like it one day out of the blue) my doctor has tried me on different antibiotics which haven’t helped and now been referred to a dermatologist, the doctor had a telephone call with me given the covid outbreak and i emailed him so photos of my lips. He prescribed me Protopic ointment and told me just to use at night; nothing else no advise or anything so I picked up the prescription put it on felt fine woke up in the night sweating and burning up and my lips were on fire. I washed it off and it’s been day three now and they are still burnt, stinging and itchy and has given me a rash on my chin. I only used the ointment once and will never use it again but I’m horrified reading the side effects etc and you can’t go in the sun and will all the hot flushing I get after one application. I know you aren’t a doctor but you have some experience of using the cream will I always feel like this or will these awful symptoms and reaction ever go away will I ever be able to go out in the sun again? I’m beating myself up as I always read the leaflet and get myself really anxious reading side effects and this time I thought don’t read it it’s only a cream and the dermatologist had given it me and never ever mentioned any warnings or side effects. I’m regretting ever putting it on and days later I still feel not right and no upset about it. Thank you for taking the time to read this. Sophie x
Hi Sophie, if you only used it for such a short time you should be OK. i used Protopic for years but have since stopped because I didn’t want to be addicted to this either. I stopped using topical steroids just over a year ago. I think I’m having a tough time coming of protopic to be honest. These things seem to work at first but at a cost. And the leaflet is worrying isn’t it? I just don’t know. Really. My doctor told me it was all safe and use as much as I wanted but now wish I hadn’t. I would suggest looking for something natural and kind that you can use. Is it just your lips? and no idea why it started? Very strange… I’m not a doctor or an expert so not really sure what to say. I am doing an insta live on Thursday at 3pm with Rebecca Bonneteu, The Eczema Expert, so why not try to join us for that?
Ruth – I am in almost the exact same position as you. While I was prescribed protopic a few years ago I was always way too terrified to use it properly what with the cancer scares and the avoidance of sunlight and alcohol etc. But, my skin got so bad recently on my face that I just had to try and get it under control to save my sanity – it was a ‘can’t smile’, can’t touch, eyes weeping and running like a tap kind of flare-up. So I dug out the protopic (checked it was still in date!) and got to it. Almost instant results – that seem to last for a long time without re-application (unlike you, I know, sorry).
Like you I read and read and read the stories on the internet, sought out all the descriptions of side effects and scared myself silly yet again. But I am pressing ahead with the maintenance dose anyway – (couple of sparing applications a couple of times a week) and it seems to be working. I am delighted with the results – my face moves, it feels almost elastic and I can rub it when I’m tired and not spark a snowstorm! The little things that make eczema sufferers happy hey?
But I would also love to know more. Funnily enough the Dr who first prescribed the treatment for me was my GP back in North London – that holiest of holy grails – a female Dr who listened and offered carefully thought through advice and treatment. But best of all acknowledged my eczema as an illness – not just a minor inconvenience or a worse still a case of female vanity. It just as happened that she was the wife of the consultant who was instrumental in developing tacrolimus at the Royal Free Hospital. I moved on and she retired. Why oh why I didn’t pin her down and ask her all the *burning* (sorry ;)) questions about protopic I have now I’ll never know.
Good luck with it though – and for what it’s worth, I’m with you on the ride!
Hi Rebecca, I too delayed starting using it, I didn’t trust it, and when I did use I never get burning instantly at all, not once. But finally, when my docter told me off, why wasn’t I using it? I got down to it. So glad I did. Only actually been 2.5 months though it seems much longer, so I probably need to use it for a bit longer before I tail off. Getting used to the hot and cold flushes. Just weird not painful. Your doctor sounds great and what an interesting connection.
I think female vanity is not to be overlooked – not many people, let alone women, would be able to cope with going out, to work, to meals, to parties with a red, sore, eczema riddled face. I still haven’t quite got used to that fact mine is soooooo much better now. I LOVE Protopic – really has given me so much more confidence and freedom. People even treat me differently. What a relief.
Hi how does the protopic heal the skin.does it form a white cap on top and heal it n shed . please advise.
I’m not sure how it actually works and it doesn’t form a white cap on top. It’s kind of a clear emollient which absorbs into your skin
My daughter was on steroids from when she was a few weeks old until we finally say a doctor who specialised in allergies when she was about 4 and a half. We knew she was allergic to milk but we basically just told to get on with it. Had an emergency referral to dermatologist when she was a few weeks old. Dermatologist just kept proscribing steroids so did out gp. I was made to feel stupid by both for suggesting that perhaps other allergies were contributing to skin problems. There was nothing to be done. Everytime we stopped the steroids within a few weeks her skin was appalling again. Mainly on her hands, arms, legs, ankles and sometimes stomach. When we say a peadiatrician when had an interest in allergies her immediately ordered blood tests (never done before) and prescribed protopic. It really was like magic. She had to stay out of the sun and cover up but her skin healed and stayed good. The first time she had to use it for several weeks gradually reducing the amount. She is 13 now. We have use steroids maybe 5 or 6 times since then if her skin has been badly inflamed and infected. We use protopic if it is getting bad for a few days and that is normally sufficient. Not had to use either for a while. It can be hard sometimes, we live by the sea and she loves the beach so try to avoid protopic in the summer. She used to look like she had little red gloves on all the time but no longer. 🙂 With regards the blood tests when we got the results she came back as allergic to all the things tested, milk, eggs, nuts, soy wheat, fish, cats, dogs, grasses. I had been giving her lots of soy because she could not have milk and lots of wheat! Furious at previous doctor and dermatologist when I think of all her probably unnecessary suffering. She can now tolerate limited amounts of soy, is ok with wheat.
It makes me really angry too. Protopic is really not that expensive so to hear so many people also needed it and didn’t get prescribed is frustrating and reason I have written about it. I had to beg for it for years before finally being prescribed. It shouldn’t be so hard and steroids are not good on the face yet are often the only alternative. Thanks for sharing your story and I am so glad another person has found this stuff so useful. I have found it not so useful on the rest of my body, only using on my face.
I am going in today to see a female doc here in the States to see IF I was prescribed Protopic when I first went in in June ’cause I don’t think I was!!! I was given some sort of hydrocortisone “buty” instead. But the doc was old- nearly feeble for God’s sake!
Anyway, I had my first- FIRST- bout with eczema (the seborrhic kind I think based on online photos) four years ago in my late 50s. I am a redhead so have thin, somewhat sensitive skin anyway (but not overly) but this threw me for a loop gals.
The spots were entirely on my face and neck, eyelids, not scalp. Four years ago I didn’t use Heads and Shoulders shampoo (for dandruff) cause I didn’t run across it online then I guess. Plus I’ve never had dandruff that I know of, never. Anyway that shampoo helps but I really think my eczema is caused by chemicals and Lord knows there are so many chemicals in the world now. My trigger seems to be non-sensitive type shower gels; too long in my new! (renovated) gorgeous bathroom with shower seat :(; MAYBE coffee, tea (too much caffeine perhaps). My latest flare seemed to happen when I was stuck all summer in an overly air conditioned office, went home to an air conditioned house, (no humidity) and when I stopped cutting my coffee with caffeine-free coffee (i.e., half-caff).
Just my thoughts on the matter. I just hope I’m not stuck with this condition the rest of my life. I do feel there is a gut connection, but I take the best probiotics available (and prebiotics) so I think the anti-histamines do a number on your gut (block histamines THERE where they are NEEDED).
PS I just feel I am in a downward spiral- my skin will supposedly heal for no longer than a week, but because it’s been maybe permanently weakened ANYTHING sets off the cycle again. I.e., I don’t think any one food, drink or condition causes it now. It’s all kneejerk on my part. And I don’t necessarily buy that emotions/stress cause this condition. At least not in my case- I just got married and am happier than I’ve ever been. I also have, like, NO stress in my life really. None. Thanks for reading…..
Did you manage to get some Protopic Ellen? It’s nearly a year on so how is your skin doing now? Mine is OK… face not bad with protopic but rest of body in a minor flare up flare down itchy state. Protopic doesn’t seem to work on the rest of my body at all.
Ruth: Yes, it’s easy to get Protopic in the States and I did get an Rx over a year ago now from another, better dermatologist (the first one was so old he seemed almost decrepid! lol). I use it (.03% cause I’m a redhead) in tandem with Ketoconazole which kills the yeast on the surface of my skin. So together it’s a one-two punch to knock out eczema.
I haven’t had a flare since early last fall, thank God. I keep tubes of both creams at home and work. Good luck with your skin Ruth!
Fantastic! Thanks for sharing. Always have a tube in reserve and here’s hoping you remain flare free! I don’t know why it’s so hard to get in this country. Very frustrating.
Hi there! As a former protopic and topical steroid user I felt obligatied to reply on your post. The reason your face is flaring so badly is because of long term over-usage of topical steroids. Please take a look at itsan.org for more information about this condition. I went from steroids to protopic hoping it would help me in my withdrawal. However protopic is just as addictive. It’s a long process healing normally takes place within 18 months.
I have heard about topical steroid addiction and overuse, but I honestly haven’t used steroids for over a year, and if I have it’t been for a few days on time areas of skin and hardly ever on my face. I never found it actually helped, favouring instead just letting my face heal with only emollients to moisturise. Of course it could be steroid addiction, and I am worried about the protopic. I’m trying to cut down on my usage now. so far so goodl
I have had an eczema-like rash on the glans of my penis for >10 years. It was misdiagnosed for many years and went untreated leaving it red and raw (though not painful). Eventually after biopsy it was diagnosed simply as recurrent inflammation. I was prescribed mildison lipocream and used it for many years but got worried about long-term skin thinning effects, over sensitivity during sex and cancer risks. I was then prescribed 0.03% Protopic and it was miraculous! It cleared the rash within days. I use it sparingly twice weekly for prevention; if I leave it more than a week small pin-prick red spots appear and within days it gets quite bad. Thus, maintenance use is necessary. Only mild burning sensation when hot water hits it and it can make me sensitive (sexually) within a day or two of use but that is manageable. However, I am very concerned that I have had to use this for about 6 years now particularly given the cancer-risk mentioned on forums though I note that scientific papers say its safe for long-term use at least up to four years follow up. Stopping treatment results in the rash coming back quickly. The doctor has no alternative. So I tell myself that 0.03% is a low dose especially when applied sparingly and periodically (I don’t use it daily but once to twice per week). I am 33 years old… am I going to have to use Protopic forever?!
Hi Neil, thanks so much for your comment. I get eczema ‘down there’ too and it’t not easy to deal with and also not great for the sex life. I am really glad Protopic is helping you – it has certainly totally changed my life. My eczema flare ups were mainly all over my face and neck. Very visible and for a woman, not easy to live with. If you don’t look ‘normal’ you are judged as a woman in this society. People don’t understand how hard eczema can be to live with but having eczema on your penis must have been horrible. Even going to the doctor and showing it must have been a big step. I remember when I reacted to condoms the first time I used them (latex allergy – on the joy) I thought I had got some nasty STD at the time, that was a complete nightmare. But I am still with that guy (my husband now) and you can get latex free condoms thank goodness.
As for are stuck using this stuff for the rest of our lives, at the moment I wonder the same. I’ve been ‘using’ for about 7-8 months now and trying to reduce the applications. I am down to applying to my face 3-4 times a week instead of twice a day which is a start, but if I leave it longer it all starts to react again, little pimples or hives of redness at first and then the itching. What is causing this? people say it’s topical steroid addiction or withdrawal but I hardly use steroids any more. Apparently if you use steroids elsewhere the reaction to withdrawal can happen on another part of the body. I must look into this and try to go cold turkey on the steroids as I do use Elocon on my legs and back occasionally and a horrible burny scalp application when my scalp gets all eczemay. I hope we are not addicted and stuck with it for life but for the time being I cannot imagine going back to life without Protopic. I really has changed it so much, as I can see it has for you too. The flushing is weird but is getting less now for me. Good luck and keep in touch. Not that many guys reading my blog so great to hear from one 😉
Hey Neil,
I know its been a long time since you posted. Are you able to see this? I wanted to ask you about your biopsy because I am dreading having one there too.
Thanks!
Ruth,
My son had severe eczema from about 8 weeks old. Turning point was referral to dermatologist who prescribed him with a mild steroid cream and the use of protopic, we use it on his hands, wrists, scalp and mouth/lips. Obviously we’ve read all the warnings but use it only when necessary and it does clear up his skin very quickly. He has been on Azathioprine for the last 18 months which has improved his skin dramatically, we hope this will continue, however you never know with eczema!
Hi Teresa, well that is a great story. I’m so glad you son’s skin has improved. So often comments on here are from people really struggling with their eczema. so it’s great to hear a good story. How’s he doing now?
Hi Ruth,
This is quite a long shot but what the heck. I’m a 26 year old man from Manchester. I’ve had eczema all of my life but it’s migrated over the years and I now have it on my face. I recently saw my GP and she wouldn’t prescribe protopic (or even refer me). I made the point that using betnovate / clobetasol for years is probably not doing my skin much good but it was no use. I was prescribed dermol 200 & 500 / epaderm again but moisturisers don’t seem to make much difference to the itch or redness, and to make matters worse I still suffer with acne so it often makes that worse. I want to try protopic to see if it helps, before attempting to see a dermatologist and then possibly being denied anyway. Does anyone know why I can buy the real product online, or can anyone even spare a small vial of the stuff so I can try it? I know the dermatology referal process takes a few months and i really don’t want to go through it again only to be denied 🙁 Can anyone help me?
Rich
Ah this really annoys me. It took me soooo long to get hold of it myself and I really don’t understand why. I imagined it was because it was a really expensive ointment but it’s not. It costs a very small amount, like £25 or less per tube and for me, as I’m just using on my face a tube lasts me well over 6 months as I am reducing the dose now and not using every day or even every week sometimes. I have tried to find a source online to buy but I can’t find one. I would suggest trying your local PALS service http://www.nhs.uk/Service-Search/Patient%20advice%20and%20liaison%20services%20%28PALS%29/LocationSearch/363 who may be able to help you get a referral. You deserve to get to try this stuff, it has really changed my life. I don’t know how I lived without it, but it took me YEARS to get hold of it. Good luck and do let us know whether you finally get success.
I’m so sorry for all your troubles. For all the bad press our American healthcare system gets, at least it’s always prompt- there is no wait or queue so to speak.
I went into my dermatologist last summer again after what they initially put me on (see my post above) was ineffective. My new, young female dermatologist put me on a combo of Protopic (.03%) and Ketoconazole. I put that on religiously for about 2-3 weeks then switched to every so often.
Now I seldom get eczema on my face (I only got it only my face and neck) unless I hit the red wine or have a too-long hot shower or get super upset about something (my known triggers. Others feel shrimp and coffee are triggers).
I only started getting eczema in my late fifties. I am now 62. I get a lot of compliments about my skin ’cause I get various treatments, laser, Radiesse, etc. I’m known for my youthful look so I am not going to put up with eczema guys! lol
You may be able to get it from a Canadian pharmacy with just an Rx. Try to get an Rx from a friend who’s a doctor. For years I got Retin A from a Canadian pharmacy for half price, but you do need a Rx you can fax in. Good luck.
Dear Rich – (hope you don’t mind me commenting Ruth!)
I’m really sorry to hear about your eczema and acne on your face, and your difficulty getting through to your doctor – it’s bad suffering from these frustrating conditions without having to deal with an unsympathetic GP. I suffer from facial eczema and acne too – and it can be devastatingly difficult to deal with as you well know, treating one of those conditions usually aggravates the other. But with proper management you could be in a position where you have it under control. My advice is to not give in until you have been referred to a specialist dermatologist at the hospital – you need to be seen by someone who properly understands your skin. Tell your doctor how this is making you feel (pretty lousy I suspect), tell her that your emollients are managing the dryness associated with your eczema but they are making matters worse with your acne – these greasy creams for eczema on your body are just no good for your face. A dermatologist will help you with both of those issues and find a treatment that will work for both. Protopic might be the answer, but you need to have an opportunity to discuss this with a specialist – to put this in context – GPs receive just six days training on dermatology during their entire training period. Remind your GP that you have a right to a second opinion and keep making appointments until she refers you
Thank you for all the replies. I will make an appointment with another GP and try the PALS service. I think the GP deemed my eczema not severe enough, but we all know it fluctuates. I’m not sure I’m going to get it to be honest. Having eczema and acne is rubbish isn’t it? I also have hyperhidrosis so I am a dermatologists wet dream, or nightmare perhaps.
Rich, take some selfies of it at its worse and show them to your GP. You don’t need a dermatologist to prescribe it. My GP prescribed it after I did this. I used the protopic twice daily for six weeks at first as instructed. I had clear skin in two weeks! After six weeks I reduced to every three days then less and less. It’s been two and a half years now and I use it fortnightly. Feel free to contact me.
Hi i use protopic for 5 years now. But in between i need to use a moisturiser. Im not able to find a moisturiser suitable for my skin. Ive tried everything. Using protopic everyday is making my skin sensitive to other creams. What do you use in between to kerp smin moist? Thank you!
Hi Farah, I use a combination of Epaderm and Pure Potions Skin Salvation at the moment. my skin has always been very sensitive to most creams. Emollients work better for me. You could try Doublebase or Diprobase. Do you have a dermatologist you can ask?
Would anyone be willing to offer a small sample of protopic so I can see if it works for me, before I go through the referral process? I have an eBay and PayPal account if this helps.
Rich
Hi Richard, that could work but I needed to use it for a few months to see results of it really working. I wonder if you can buy it online anywhere? You do get online drug dispensaries but I’m not an expert and I don’t know how that works for prescription drugs. It’s such a cheap bloomin ointment i don’t know why they hold back prescribing it so much? It’s a life changer.
Hi Ruth, I’ve had a look around but all of the legitimate websites ask for a prescription. Do you know if it can be prescribed by a GP or does it always require a referral? It is frustrating because I’m having a bad flare up at the moment but it looks like I will be in for a long haul. My GP actually refused to prescribe a moisturizer recently when I said the one I had was making my skin worse, she said it was a waste of resources!
Your GP sounds awful, First thing, ask to see another GP. Ask if there is one with knowledge of skin issues, eczema etc. It took me 3-4 years to get it, finally from a specialist dermatologist but my sister was presecribed by her GP. It is the luck of the draw with doctors, some fo them are just crap, There I said it. Yours is actually being negligent. There are many moisturisers which irritate my skin. YOu deserve better service than this. I use Epaderm when skin really dry and Diprobase or doublebase when it’s nt so bad. An Emollient can be better. I also love Pure Potions skin salvation and you CAN get this on prescription though both my doctor and dermo refues me this. It’s a bit too expensive for me to buy and use all the time but I do use it as a treat. I get through a tub and a half of epaderm a month sometimes, 500g of the stuff. I would actually go in abd compain, say you are not getting a decent service from your current GP. It is your right to do that. PALS may also be able to help. If your eczema is effecting your quality of life, which it sounds like it is, they you should be able to get a referreal, esp when your doctor is being obstructive and unhelpful. We should hame and shame these rubbish doctors. No bedside manner
Gah, still not luck. I find that my skin is ok-ish for a week after applying betnovate then it becomes dry and burning again. It’s just a continuous cycle.
That doesn’t sound good. Could it be topical steriod addiction? not good news if it is and I’m beginning to think I may have this on my body… Google topical steroid addiction. Not for the faint hearted.
I have been using Protopic on and off again for over a year now. I have often wondered about its long term use and have also received mix opinions from various doctors and dermatologists. The biggest concern for me is that it is an immuno-supressant, which recently caused me a lot of grief. I had a small patch of bumpy eczema on my forehead and between my eyebrows and applied Protopic as I normally would. The bumps seemed to get worse the more I used Protopic so I stopped, but it was too late! To make a 2 month story short, the eczema had become infected (probably from the Protopic ruining my body’s ability to fight the infection) and slowly but surely evolved into several VERY stubborn and VERY infected areas on my face, resembling impetigo. Crusty, oozing patches that drove me out of my mind for weeks. The infection finally cleared up after seeing six doctors, trying four different antibiotics, and a month off work. It might sound crazy, but I still rely on Protopic for eczema on my hands and occasionally (but very sparingly) on my face because there really are no other options. (To me, steroids are NOT an option because of their negative side effects and the risk of withdrawal symptoms). So yes, Protopic is a magic “cure” for my eczema and excluding my recent infection fiasco has improved my quality of life immensely. Do your research, get more than a couple doctor’s opinions on its benefits and deficits, and be cautious with areas you suspect may be getting infected due to itching and frequent touching.
My other big concern with Protopic is how taking one sip of alcohol will cause my entire face to flush in a red splotches. This is listed as a possible side effect and clears up in about 15 minutes and I can enjoy the rest of my glass of wine (or two!) but it is a little scary how applying something on your skin can have THAT much of an effect on your whole body. I guess this speaks to how vital an organ our skin is, and also how strong this magic ointment truly is. Eek! Does anyone know anything about why this reaction occurs? Or if it is dangerous?
Good luck all!
Hi PJ and thanks for sharing. I have heard infections can be a problem but so far not had this myself. (fingers crossed). You really need to boost your immune system after all those horrible antibiotics. I get the alcohol flushing too which amuses my friends and I just put up with it. Annoying but yes, what is going on there? Very weird reaction.
Ruth, reading this article was like reading about myself. The crazy itching, oh my goodness I used to want to rip my face off my skull because it felt like thousands of tiny creatures were in there. The heat was so intense I too used ice packs. I was told many times that good allergy tests were expensive and tried numerous steroid creams which worked a little here and there WHEN A flare up exploded. Now, with fortnightly preventative treatments of protopic and very occasional top-ups, I never have a flare up. My skin used to feel like thick, rough, scrap-book paper. Now it’s so smooth and fresh.
I loved reading your “cold mask” analogy. Many times I’ve tried to describe this to people. Lovely to read it like that. Do you get that strange feeling when you put warm water on your face, that the water is really cold on the treated areas?? So strange. It has changed my life too Ruth. I absolutely love it. I often touch my smooth skin now and it never fails to amaze me. It used to feel so thick and rough, sometimes clammy and sticky. I had the swollen, creased eyes, redness and often large “scabs” that would just appear within a few hours and come away.
This stuff is truly amazing. I wish I’d found it sooner. Thanks for putting this article out there. Lovely to read xxxx
Thank you so much for your comments. It’s so heartening to hear that sharing my story helps others, and very glad you have found Protopic too. It just seems so hard to get hold of for some people. I know what you mean about soft skin. I had never had soft skin before protopic. My husband now strokes it all the time – so much so it sometimes drive me bonkers but when I remember my elephant skin from before I just thank my lucky stars I have soft skin now. I’m about to try it out on the rest of my body now. I had been reluctant before for fear of needing too much and my body is not as bad either, but my dermatologist says it could well give me soft skin everywhere if I’m lucky. My legs and arms get so dry and red and blotchy but since it’s not my face I’ve come to live with that. Here goes with an all over body Protopic assault. Wish me luck. Do you use it anywhere else? I treat the stuff like gold dust and use so sparingly so it will be a bit scary to use more widely – I have a terrible fear they will stop giving it to me.
I am probably down to using it once or twice a week now. I have the odd minor flare up around my mouth mainly and I then use it for a few days till it clears up. I just keep reducing the frequency and the only annoying side effect is the face flushing with alcohol.
Re washing, I notice that my face feels cold when I wash, even with hot water, which is really weird and then if I’m in front of a mirror, while it feels cold it flushes red instantly… and then calms down. Very weird. I can live with the flushing though. Not ever going back to how I was before. I don’t know now how I ever coped without Protopic. Thanks again for the comment.
This was such a helpful post to read. I was very recently prescribed Protopic for management of my facial eczema and used it for the first time yesterday. My doctor had discussed the burning with me, but it was great to hear directly from others who have used this medication. I totally knew what to expect and therefore to hang in there and not panic when I experienced not just the burning sensation but lots of delightful itching and tingling as well. It’s one day later, and the Protopic has already cleared about 95% of my eczema…I feel like a normal person again!
One thing I’d be curious to know is how others incorporate Protopic into their skin care routine. I read that it can be used with moisturizers for those of us who have persistent dry skin, but I don’t know the best order to which to adhere with respect to that. Right now, I’m using a gentle cleanser, a hyaluronic acid serum, a moisturizer, and then the Protopic, and this seems to be working all right. Is it okay to add a sunscreen over that? I’ll ask my dermatologist when I speak with him during my follow-up appointment, but until then, I’d love to hear others’ thoughts.
Hi Susie, I don’t know what is the best way, I must ask my dermatologist next time I see him also, but what I do is use it after washing, which I do just with water. I then use Epaderm or other emollient to moisturise on top if needs be. I have to say though, over time, the Protopic seems to make my skin so good now that I hardly need to moisturise. It’s amazing. My face used to be so dry before. I do have the odd flare up but these now clear in a few days with extra use of Protopic, rather than a whole week or longer before I used Protopic. It really is amazing stuff. I’m using it on the rest of my body now so we’ll see how that goes. Less burning sensation, more like tingling itching, yes. Fingers crossed it helps my whole body so I can stop using steroids.
Hello, I would like to ask you, how long till today you have been using protopic and how often now do you use it e.g. once a week or two week.? I am gonna use it today. I have very good experience with it from past. And my second question after how long can one go to sun? after week of break?Thank you much
Martin
Hi Martin. I’ve been using it for over a year now. Started in June last year. Now I sometimes can go over a week without using. I get the odd flare up around my mouth and less so on other areas of my face. Then I use it again for a few days morning and night until it clears, then reduce down again. Sometimes I forget how long I have not used it for. It has been such a life changer for me. And it hasn’t completely stopped flareups, but they are so mild, clear up quickly and don’t cause me nearly so much pain and anguish. I have just been to a big conference where I was speaking so often then I’ll use it a few days before I go just to make sure i don’t flare up in front of an audience! Hope this helps and answers your questions.
PS. regarding the sun, missed that bit. I try to stay out of sun as much as possible. It just also feels really hot although now after a year that sensation is reducing in heat. Just be careful like you would anyway in the sun.
Hello again, thank you much for your answer. I have been using it from sunday, I had week break but this was mistake. Now my plan is to slowly prolong the period of using it. I will be using it 2xday for 5 days, I suppose that all areas will be cleared off. Then will use is twice a week and then once a week and then once a more than week, two weeks etc. You know just slowly tries to help skin return to normal but not radically that is very often mistake of people that stop to use cure for ever. I also control what I eat and drink – no any alcohol for really long time so I am lucky 🙂 and I also use supplements recommended for help skin. So logically if I will eat much vegetable and eliminate allergy foods like wheat, diary, sugar, alcohol, some fruits, will sport and use supplements I believe that my body will get the best I can do for it and it will be only matter of time when skin becomes healthy by itself. I have ready thousands of success stories about eczema cure but 99% of them were based on strict diet where skin got much worse during first couple of months cause these people changed eating habits that causes strong detox. I tried it also but I am not able to come through such pain…..so I started to look at this think more logically and more humanly. I think that if you take care about your body from inside with supplements and good healthy food, together with sport activities and elimination of stress, your body can cure too with less of pain. I know that Protopic is not natural, but helps skin and this is the most important.
I use it on average once per week. I use 0.03% Protopic and it takes me about 18 months to use a full 60g tube. So I calculate I am using <0.8g per treatment (a very thin film over the affected area only; usually dabbed on the specific red spots that are developing). If I drink alcohol it makes the flare-ups much worse.
PS. I have been using it weekly for 7 years.
Hi Neil,
for 7 years you are using Protopic? and you are fine with that? no any signs of any side effect? and what about sun, do you go sunbathing? or do you travel to see?
Thank you much
Martin
My condition is highly recurrent inflammation. Using steroid based topical treatments was a problem with skin thinning. Whilst using any product long-term carries risks, Protopic is the only treatment that effectively gets rid of the problem. I travel a great deal but the skin affected is always covered with clothing and thus exposure to the sun is not a problem. As I said, it takes me 1.5 to 2 years to use an entire tube of Protopic so I use it very sparingly, apply only on the specific red dots that appear signalling a flare up is coming back, I wash daily to remove any residue and apply typically only once per week. Thus, I believe I am minimising any side-effects; of which I have none. My doctor has no difficulty in my using the product.
That is nice and great. I am now using 0,1% for the second day. I have my plan and after eczema will be gone I will ask my doctor to prescribe me 0,03% that is more safe. But for beginning 0,1% is important cause it clears flares up faster. Btw do you use any other moisture for your skin? in period when you don´t use protopic e.g. eucerin or olive oil etc…? Thank you
Martin
No, I do not use any other product in between Protopic as my inflammation is in a area that does not dry easily.
Hi Martin, I find, on my face I hardly need any other moisturiser which is unheard of for me. I do use Epaderm on my neck and face sometimes though after a shower. I also have some nice emollients and creams from Pure Potions and Eve of st Agnes but suspect they might smell too girly for you… Diprobase is also good for me and is less greasy than the Epaderm. I have heard some people swear that Aveeno is really good but I find it not very moisturising enough for my skin.,
Hello, I would like to ask you regarding food. Do you eat just everything or do you use some special diet?
And regarding chocolate, I know that chocolate is bad for eczema but only if you eat sweet, but if you eat dark e.g.. 85-90% then there is so little sugar that it is ok and benefits that you can get from cacao are really very great. I love dark chocolate so I wanted just to share some info with you together.
Martin
Just some quick thoughts on this – I have had eczema for most of my life (40+ years), which had appeared on my face just a few years ago. I was told by my dermatologist that I am allergic to Balsam of Peru after skin patch testing so I now avoid any products that contain fragrance. Also did the BofP elimination diet for several months which provided no relief. I was referred to an allergist and am now getting allergy shots for the second time in my life. The allergist prescribed Protopic, but I had to wait until meeting my deductible was met as Protopic costs $900 here (US). Used it for the first time about a week ago – had been scared by the warnings. I put it on before going to bed and was woken up about 2 hours later in a crazy amount of pain. It felt like what I would imagine having acid poured on one’s face feels like. Intense pain, and itching. I tried to wash it off, but as the consistency is that of Vaseline, that was little help. I powered through the pain until I fell asleep again. Pain continued into the next day, but then subsided. I will say, that just one application seemed to make a great improvement in my skin. I’m considering if I want to maybe spot apply it again to see if I have the same reaction.
I would persevere. It is one of the known side effects and the pain does subside. I didn’t get anywhere near as much burning as you describe though. I got more weird burn and cold effects in extremes of heat like the oven or the sun instead. Stay well out of the sun!
The $900 mentioned above is definitely a typo. Here is what Protopic costs in the major drugstores in America BEFORE insurance, i.e., this is the “out of pocket” price for Americans without insurance:
Walgreen’s $196
(with free coupon- $100.64)
Rite-Aid- $235
Kroger supermarket- $188.82
CVS Pharmacy – $189.81
with free coupon
Walmart 180.02 with free discount
Sams Club
View store details 185.08
I paid about $35 or $50 for my tube a year ago summer (can’t remember) because I have excellent local gov’t health insurance with a low premium and deductible and excellent drug prices (generic, preferred and compounded ($100 copay)) Many generic drugs in America now cost under $50 or even under $10.
The sad truth though is that Americans take a pill for everything without living clean or doing the proper amount of exercise. For a certain group exercise and the look of one’s body is almost a religion now, but still the vast majority of Americans keep eating out too much and eating the wrong things. Produce is expensive however- I know that. California and Florida grow nearly all our wonderful fruits and avocadoes etc but shipping is expensive. Many as a result have small home gardens, but me myself I’ve never been able to grow a tasty tomato! I do love my spices however and use fresh basil, rosemary and mint in a lot of my cooking.
So America consumes 60+% of pharmaceuticals worldwide but also pays the highest prices. Late stage cancer treatment in this country, even with a good insurance plan, runs $5000-$10,000 a MONTH for the drugs alone. That is why our healthcare system is bankrupting us. Before Obamacare (which is a bandaid treatment, but at least a start) the biggest cause of home foreclosure was medical costs.
I double checked my Rx history through insurance. I paid $10 for a Protopic generic because I had met my deductible. However, the amount, with insurance, was $725.31. This was for Tacrolimus ointment 100gm 0.1%.
I’ve been too afaid to use it again. So the good news is, it will last me forever!
Is there anywhere online I can buy protopic?
I saw another GP at my practice and she refused to prescribe it. I can’t remember exactly what her reasoning was, but she presribed moisturisers instead and gave me a handout which looked like it was designed for children. I felt frustrated, and a little bit humilitated and I haven’t been back to my surgery since (a few months ago now).
I never bothered to buy the moisturisers because I’ve had eczema for 27 years (my whole life) and have used every moisturiser there is. They often make my skin worse for some reason.
So right now I am stuck. I still use betnovate on my face when it flares up, but it isn’t a cure and my skin is a bit of a mess to be honest. It’s red and a bit raised and I’m not even sure what it eczema any more.
I would like to try protopic (or elidel) at least once, but no one will prescribe it. I’m stuck and going around in circles.
Rich
Hi there,
Could you offer advice on what I can (realistically) expect from protopic? I’m seeing a private detmatologist atm for roaccutane and I could ask him to prescribe this also, but it may be expensive.
My eczema is mainly on my hands and wrists. Extremely dry and red, even if I moisturise a lot with cetraben it is still very red and goes back to being dry and flaky. Betnovate seems to have limited effect, even less hydrocortisione. Do you think protopic will get rid of it totally? If it does then I will have to bite the bullet and go for it.
NOt used this on my hands but on my face it took a few weeks, but within as little as a few months I was seeing improvement. It hasn’t totally got rid of the eczema but it is almost gone and flareups are manageable. Good luck at the docs. PS. it’s not an expensive drug here in the UK. From £13 to £25 a tube. I don’t wall that expensive.
Hello, I would like to ask you about diet. Is there anything you tries to avoid? e.g. alcohol, coffee, sweet, wheat, diary or you just eat everything? Thank you much.
Martin
Ah hi Martin, I didn’t reply as we got to the end of our comments up there didn’t we. I do avoid certain foods due to allergies which cause anaphylaxis and eczema. I can’t eat nuts, dairy, wheat, soya due to bad allergies. I also avoid celery and tomato which affect my skin. I would do an elimination diet though as we are all so different. It could be totally different food for you. I do find that cutting out ALL processed food helps. I also know alcohol affects my skin and dries it out and makes it itch but I still drink. Daft to the end me.
Is there anything you tries to avoid as foreating? e.g. alcohol, coffee, sweet, wheat, diary or you just eat everything? Thank you much.
Martin
I know alcohol exacerbates my eczema but I’m very bad at avoiding it. Going cold turkey at the moment to give my skin a break. Also lots of sugar isn’t great but some is OK. Try to have more natural sugars, not white processed stuff. I am also allergic to dairy, wheat, nuts, soya, celery and tomato. Out of those the dairy and the celery and tomato wreck my skin. Dairy is a well known skin problem food. Any foods which cause inflammation are bad. Coffee can be bad for some. I try to limit my coffee consumption and make fresh brewed coffee not instant. What you need to do though is find a dietitian or nutritionist who can help you do a food/mood and symptoms diary
Well hiii – 🙂 but you know – I like this that you are not like some machine, but from time to time dring alcohol and other things. My mother suffers eczema for more than 35 years. Just from time I remember her from childhood – she tried everyhing, she was also even in hospital to cure her with corticoids but all helped for a while. She told me that the more she used any cream the worse it was. They also offered her to have diet but when she was on diet eczema was still there and it has not helped so she told me that got angry to all of this and tried to eat everything. To be body used to many things and you know – what is life for when you are limited not to eat what you like….so this year she is completaly cured!! without any cure, any creams , any diet!! – she told me secret – eat all but with limited amounts! and she aslo staied a lot outside even on sun cause she is retired and doesn´t need to work anymore – thanks God, so outside her skin god more dry and dry and dry and finally eczema is gone.!! – I am today on the 4th day of using protopic and it is amazing. My sking is better and better. Tomorrow will be the last day to use it twice a day and then only once a day twice a week. So next will be on monday I guess etc. I am eating healthy instead of my mother 😀 and I also use supplemets and Alveo from akuna.net to help my body detox but more human way and the most of all – I am christian and I strongly belive in Jesus healing power.
Hello, I would like to ask you about your sister. That story is amazing. Did she go under some special diet when using protopic or she just continued to eat normally and used protopic for skin? And question to you, when your flare up apprear you use protopic twice a day let´s say two days? or only once a day for two or more day on this area? Some people claim that eczema is due to leaky gut and from this reason go under only raw food for longer time that firstly triggers their eczema but then it helps them but I think that it is not neccessary. I use protopic now, I tried to prolonge period but after night of scretching it is like from the very begining. Thank you much. Martin
HI Ruth,
I was really glad to find your post after a bit of internet searching into Protopic! I have just found an angel of a doctor who after taking a look at my face for five minutes prescribed me Protopic and sent me on my way.. I’m so happy to say that after four days of using it I’m already seeing a difference which is amazing after having a constant red rash on my face and hands which was driving me insane. He has also sent me for allergy tests as a back up but waiting on the good old NHS to give me a date for that.
I have felt the burning sensation after applying the ointment which I’ve read happens to a few through the comments to your post. I had also read your comments about alcohol… which is where my question comes!
Now, without sounding like a total alcoholic (!) I do like the odd drink from time to time and I was wondering what the effect was like for anyone? I do work in an industry where I have to take clients on social events and do have one next weekend but also with using this ointment don’t want to look like the flushed mess in the corner. However in saying that I am happy to forgo the drink but that results in my clients either thinking im wimping out or im in the family way!!!
So I was thinking I could perhaps stop using the ointment on the lead up perhaps, or was the effect not visible (IE you feel flush but don’t look it?) and I could just ride it out?
Any insight would be A-Mazing! 🙂
Becky
P.S Im on the low does stuff 0.03% and using it twice a day.
Thank you all.
Hi Becky, I’m so pleased for you. Another Protopic life saver. So your questions. I would suggest doing an alcohol flush test before this do with your clients. I know some people who don’t get the flushing with alcohol. I think it has lessened for me over time but that doesn’t help you since you’re a relative Protopic newbie. I do flush a bit when I drink, wine seems to be the worst. But it subsides after about 20-30 mins and it’s really not that bad. I just look a little rosy faced. Most people don’t notice or comment, but then they’ve seen me before Protopic so maybe it’s just not such a biggie. I don’t think having a few days off using will stop the flushing. I can now go weeks without using it, though I try to do a two day weekend top up at the moment and still get flushing even weeks after using. So that might not work. So your options are, don’t drink or ride it out. Or you could get some cover up to see if that might mask any flushing? I find it’s not a problem but I’m a bit of a lush and could never forgo the drink. I’m on the high dose. My dermo is a bit gung ho and ways use as much as I want and keep using twice a day but I really feel I want to reduce my dependency on it. On the plus side, my sister has used Protopic and now doesn’t need to use it all except for the odd flare up a few times a year. There is hope! Good luck and let us know how you get on at the company event. Whether you brave it and flush, avoid the booze or maybe you didn’t have that side effect! I’m currently testing which drinks cause with flushing because I think some drinks cause a lesser flush e.g. vodka. But watch this space. Not scientific and not fully tested.
My sister pretty much eats what she likes. Unlike me who avoids lots of foods. If it flares up I use twice a day then tail off to once a day, then only use it when I get a flare up. I can go weeks with not using it and I forgot to do the maintenance dose at weekends.
Thank you for this post. Seems like my condition for about 20 years was the same. Started on protopic recently. And I have my confidence back. Feel great, skin on face has never been better. Eczema has always been on my face. Honestly a life saver. I just don’t understand why my dermatologist took 20 years to prescribe me this. Its infuriating.
I know, I’m exactly the same. Very annoying! As a woman, having chronic facial eczema is so hard to live with
Hi Ruth,
I have an important question regarding protopic, if you don’t mind me asking. I have always had eczema, but it has broken out very badly in the last few months because I’m taking a medicine called isotretinoin (accutane). It has dried my skin out dramatically.
I was ready to ask my dermatologist for protopic, but then I read something which has put me off. I saw a few articles which said protopic can cause cold sores. Has this happened to you? I’ve never had cold sores before and I reallyyyy don’t want another problem to deal with.
So at the moment I’m not sure whether it is worth the risk for me. I’m currently using clobetasol which is a strong steroid.
Thanks
Rich
Hi Richard. Well I can allay any fears regarding cold sores because I haven’t found this to be a problem at all. However I do have cold sores, and have done since childhood so I know how to fight them (PurePotions Tea tree salve and Herstat Propolis ointment). I’m not sure why this is a risk but I think it can, for some reason, cause impertigo on the face or skin and cold sores for some. I haven’t found this to be the case. I’ve had maybe two or three cold sores since using Protopic but this is just my norm and not anything to do with Protopic I don’t think. I don’t put protopic on my lips but that’s where the little cold sores appear. Got one now but it’s not causing me too much bother and is on its way out. Bye Bye cold sore. (Hope I haven’t spoken too soon).
It’s been really interesting reading all of your positive comments about Protopic. I had the opposite experience regarding obtaining it. The first NHS dermatologist I saw with my baby son wanted to prescribe it as soon as she saw his severe facial eczema. However, I refused to have it because I’m very wary of immune suppressants. I then saw a private dermatologist from Great Ormond Street who prescribed one strong steroid after another, with limited effect. She too didn’t think it was a good idea to use Protopic on an infant. My son also had repeated courses of antibiotics (about 7) for infections.
The turning point came when we went on holiday to Greece when he was 7 months old and, by the end of the 2 weeks, the improvement was remarkable. I figured it must have been a combination of the sea, sun and the soft water that we washed in. So upon returning home, I:-
i) Gave him a vitamin D supplement.
ii) Stopped giving him a daily bath in the hard, chlorinated London water and cut down to twice a week maximum. Added dead sea salts to each bath.
iii) Stopped using tap water on his face completely. I washed his face every day with Highland Spring (glass bottles).
Within weeks, his eczema had gone, never really to return (he’s now 5 years old). My 16 year old daughter had eczema throughout her childhood and, thinking back, I followed the advice then to bath her twice a day, every day, using Oilatum. But common sense now tells me that to continually strip the skin of it’s natural oils by bathing in chlorinated water must have done more harm than good. I also followed the other advice at the time and covered her with sunscreen every time the sun came out, thereby depriving her of vitamin D.
I guess my other worry about Protopic is the fact that you have to keep out of the sun. I know we’re all different but there seems to be more and more evidence that vitamin D is a really valuable vitamin and many of us are deficient in it, which in turn can cause various health problems. I know too though that severe eczema causes a lot of misery and we each have to do what works for us. We’re an atopic/psoriatic family with various allergies so I do have experience of this. But I just wanted to say that sometimes it can be the most natural things that work.
Hi Elle, yes I know. I do worry about being in the sun with Protopic, especially since I’m using it on my face. But you’re right about the natural things. I bathe every other day, and sometimes less often in the winter. I just wash the bits that need it. I also find Epsom mineral salt baths to be invaluable. Oilatum does nothing for me and if anything, makes my skin worse. You can’t beat the sun and salt for the skin. I wonder how long Protopic lasts on your skin? In the summer I try to use it once at night and not in the morning if I’m having a flare up, and now try to use it just as a top up over the weekend. Seems to be working on the whole. Summer is coming to I’ll have to think about it again then but the fact that I no longer live with a red, angry, burnt, sore face has done wonders for my self confidence, love life, outlook and how other people treat me. To just get up and go without worrying about what I look like (of course there is still the daily epaderm layers) is wonderful.
You can use 0.03% protopic at night only. I never use during the day as its underbearable. Not bursting your bubble, but there is no cure for eczema, jjst better control. Your 7 month old son will grow out of it. I had eczema as a baby and then went away. Got it really bad as an 12 yr old until today.
Hi Ruth
Not sure if I’m replying properly here but I’ll give it a go…
I’ve had eczema since I was a toddler and it’s been on and off since then – 35 years!! Most recently I’ve started having flare-ups on my face – around my mouth and eyes, and a patch on my hand and back of my leg. I started off with the usual OTC 1% hydrocortisone and eventually a prescription from the doctor – but only when my face was swollen up and I was horribly distressed would the doctor give me a prescription for something other than diprobase!
I knew about the side effects of hydrocortisone and was worried about using it on my face. And in any case the flare ups would start again after stopping hydrocortisone just for a few days. I finally read about Protopic and was V interested. I found it online and have started using the stronger one on my face. Got the mega burning the first time I used it, but carried on. One week later and for the first time my eyelids do not look like I’m wearing red eye shadow.
Because I’m using it without the doctor’s help, I’m searching online for any tips about how best to use it – so this site has been helpful. Plan is to use it twice a day for 2 weeks and then try maintenance – 2 x per week – while at the same time going to get tested for allergies and also seeing a homeopath. I’m glad to have immediate relief without the side effects of hydrocortisone but I do think it’s necessary to try and deal with the root as I’m not comfortable with using any medicine for too long. My son had amazing results with homeopathy for his eczema so I’m hoping I’ll have the same.
The other thing I just wanted to mention was daily skin care routine. I’ve been terrible with caring for my skin on a daily basis and I could never see how emollients would help because piling on moisturisers just didn’t feel at all good. But since learning about what eczema is, I’ve realised it requires washing the skin twice a day, and applying the right emollient throughout the day. For general dry skin, emollients have been great for me – especially epaderm cream and their lovely ointment. Expensive though. But flare-ups need more than emollients – I hope my GP will appreciate that one day – I worry about eventually not being able to get hold of Protopic online and being forced to seek a prescription from my GP.
I’m so glad you’ve found some relief. It’s horrible having eczema on the face. Protopic is working really well for me. I try to do a maintenance boost at the weekend and if I’m going anywhere special, a preventative boost a few days before, but it seems to be working. My skin has never been so good, it’s so soft and clear. Not perfect but pretty much there. Good luck with the allergy test and homeopathy. Never tried the latter but I know that I get delayed eczema from tomato and celery – neither of which come up as an allergy in testing. Dairy DOES cause horrendous eczema for me and anaphylaxis and this does come up positive in test. So the test may not give you all the answers but if you can get tested it could be really useful. It could also be contact dermatitis so consider also pets, dust, air borne allergens and anything you put on your skin. They could all be causing irritation. I suggest also keeping a food, mood and symptoms diary. See if you can work out a link between when your skin is worse and what you’re eating. Not only will it help you, it can also be very useful to take to any visit with a specialist doctor, dietician or nutritionist. Good luck!
Hi Ruth,
I have been using protopic daily for just over a month for facial eczema and am trying to wean off now. I have a special occasion coming up and I was just wondering how long it takes after an application of protopic to be safe to consume alcohol (no burning) or if drinking has been uncomfortable ever since you first tried the medication?
Thank you!
Hi Becky, I do still get a bit of facial flushing but I find it wears off quickly. I just tend to drink anyway! But then I’ve kind of given up caring what people think. My skin is soooo much better than it was that I can face a bit of flushing. You could try wearing some cover-up or foundation to mask any blushing…
Thanks for your reply!
I haven’t tried drinking yet but my face has been super sensitive to temperature changes and so I suspect it would be to alcohol too; I seem to be flushing a lot quite randomly already, although it is getting better. Foundation is a good idea but I’m too paranoid about irritating my skin so don’t own any!
Do you mind me asking how long you had to use protopic before it completely cleared up? My doctor said one month but it has been 7 weeks now and although it is MUCH better and other people probably can’t tell I can still see it and it starts to worsen within days of stopping.
Hi guys, so I just wanted to share my story and my experience with Protopic. So I am 33 and have suffered with allergies and eczema my whole life. I was prescribed steroid creams and would use them intermittently on my face and neck mainly but sometimes it wouldn’t work and sometimes it would. Eventually I stopped using the steroid creams and just put up with my red, sore face and neck. It’s terrible! About 2 1/2 years ago a stranger who also suffered from eczema told me to ask my dermatologist about protopic as it did wonders for him. So off I marched to the dermo and he gave me some 1% protopic in a tube. I started using is immediately, the first work I applied it twice a day and then eventually managed to reduce it down to twice weekly. I had all of the strange side effects that Ruth described, the strange hot flushes, weird feeling around hot air and more sensitive skin wherever I had applied the cream. This made me feel a bit uneasy about using it but I persisted because it did complete ‘cure’ my eczema. I was actually amazed at how it worked. My skin felt soft and new again. I think is used it continuously for about 6 months, but to be honest I never got used to the strange side effects and they always made me feel uncomfortable about the cream, like it was doing something else to my body. I slowly noticed that I started getting eczema in other areas of my body that I previously never had before and it got worse. I never had eczema on my hand before and it started to appear and was intensely itchy. This made me stop using protopic. My eczema returned to my face and neck and the usual places but far worse than before. It was terrible. I went back to using the steroid creams sparingly when I had to other choice and it was bad for about a year. I decided that my eczema was being caused from some internal imbalance inside my body as opposed to outside allergens. Suffice to say, I have been on a long journey this past year trying to figure out how to heal my body from the inside and I’m finally seeing some results. My eczema had improved massively on my face and neck and has mostly disappeared on my hands apart from the occasionally flare. I no longer have to use protopic or steroid creams and feel much happier for it. I suppose what I want to say is it’s much better to try and get to the root causes of what is causing your eczema, this will be some imbalance in your body or mind, for some it will be their diet, for other it could be stress but each persons reasons will be different and unique to their situation, it will take time and hard work but in the end is worth it. I am now dairy, gluten and sugar free and find that this has helped improve my digestion greatly which has led to my eczema improving in parallel but this has taken quite a long time to figure out. If you decide to go on this journey then I wish you luck and it will be worth it in the end!
Hi Ruth , I’m so glad I’ve found your post , I have been using pro topic 0.1% for over a year now I have managed to get down to only using one application every 2-3 weeks on my face , does anyone know if that is a safe amount to use and is it safe to go out in the sun? I love being outside and miss having a tan , but worried about the risks . X
I am not 100% sure re the sun but so glad you’ve had such an improvement. I still get the odd flare when I eat something but it is never as bad as it was before and clears faster and with less pain. I am using it probably once a twice a week so you’ve done well. Sometimes I can go ages without using it. I will ask my dermo what we should do about the sun. I might even get a reply by email. Fingers crossed.
Thanks Ruth , yes please let me know what she says ,I suffer from S.A.D aswell so need all the sunlight I can get ! X
Apply at night. I don’t apply it in the morning. I’ve also have the ecEmat in control. Only need to use protopic once a week.
Hi Ruth I’m starting probiotic on Sunday very nervous how are you doing now
I’m very down over my face won’t leave the house please let me no how ur doing.
Tanks Nadine
Hi Ruth how are you doing now
I’m starting on the Cream on Sunday very nervous
But I’m hiding in my house the last year as my face is terrible
Thanks Nadine x
Hi Nadine. Oh good luck. Give it some time. It took maybe a month to really clear up and wasn’t too burny either for me. I am now using a weekend maintenance dose and it seems to be going well for me. Good luck. Let me know how you get on.
Hi! I have severe eczema all over my body since age 3. Steroids, hospitals, creams and everything under the Internet… My face looked very similar to yours (even worst in person, as maybe yours did too), I constantly looked like a burn victim, unless I put on strong steroids which of course ruined my face (thinning, thread veins, wrinkles). I was prescribed protopic a couple of years ago, but had terrible burning, pain etc.. so I stopped. Nobody told me to stick to it regardless the burning…
I got pregnant and my eczema got even worst and I wasn’t allowed to use anything strong on it. After the baby it didn’t go away. I work close to health professionals, and I don’t know by what kind of miracle but 3 totally different docs suggested protopic again, so I decided to give it a go as I was getting really depressed about it.
Side effects for me: burning, pins and needles on lips and in mouth, funny feeling like you are high, very red skin, palpitation. The side effects lasted for about 2 weeks, but palpitation sticked with me for about 2 months.
I love protopic, I wish I went ahead with it years ago! Im able to socialise again, basically got my life back. I use it every day, before bed. My dermatologist said to use it every day. I tried to reduce it but it comes back within two days. I use moisturiser in the morning – still looking for the perfect one.
I have a couple of issues with it, and I would like to know if anyone else experiencing similar things:
– cold sores on and around nose, and when I have it I can’t use protopic there and eczema is back
– the rest of my body generally got worst, I feel like the eczema not able to appear on my face emigrates to other body parts
– spots, is my pores getting bigger? Im 34 and I never really had spots or acne
– I was told to put on protopic only on eczema free skin. So steroids first and when its gone protopic. When I have a flare up I never put protopic on it, I have to go back to steroids. Whats your experience, do you put it on active eczema? I hate steroids 🙁
– thinking about getting pregnant again, but scared of eczema, as it was pure horror last time. What about protopic in pregnancy. (I know what the box says, but did anyone tried it?)
Thanks for your page, thanks for sharing your experience. Your story helped me a lot when I started with protopic.
Maria
Hi there, I can’t answer all of your questions but I can concur with some of your experiences. I have found that eczema has ‘moved’ to other parts of my body and even that I have worse IBS. Could the things that poured and burned out the skin on my face now be effecting my tummy? My doctor says no, but this does seem the case for me. Either way, not having eczema on my face has been such a boost for me and literally has changed my life, how I see myself and how I live my life. There is NOTHING worse than bad eczema on your face. Well there is always something worse, but I really struggled with that. as a woman. I have not found cold sores spread but that is one of the contraindications noted on the medical leaflet with the cream. Not sure why, but I’ve spread cold sores with epaderm. They are highly contagious. If you touch the cold sore, wash your hands. I use PurePotions tea tree salve and also Herstat Propolis on cold sores and impetigo. It works wonders. I will take your comments to my dermo meeting in June. Fingers crossed I might get some answers.
Hi there, I am also a previous protopic user so I thought I would share my experience. I used protopic twice weekly for about 9 months as reported exactly the same side effects as you are having. I noticed that where the eczema had completely cured on my face and neck and the skin had returned to a healthy glow, my eczema began to get much worse in other areas and even started to appear in places where I previously had never had eczema before, such as on my hands. It started to get really bad which is when I decided to stop using protopic. I thought that if the eczema is just migrated to other areas, then the protopic is just treating the symptom and not really curing the reason why I’m getting eczema in the first place. The withdrawal from protopic was pretty horrid, my skin got really really bad for about 6 months after stopping, I used some weak steroids to help me through this time as well. I have since then gone on a crazy, time consuming journey to try to figure out what is the cause of my eczema and its mainly down to diet for me. My skin has gotten so much better with diet alone and I would recommend people try the natural route before applying these very strong toxic medications. I totally understand that for many people it is a trade off between the quality of life that they get back versus the side effects that come with protopic and for many this is worse it, but for me I just couldn’t handle the idea that I was putting something on my skin so potent that it would effect my body in this way. If you want to know my diet or life style routine of you think it might help then feel free to email me, jimmyhay@gmail.com.
I had been using Protopic on my eczematous hands for few months. Sometime I stopped for weeks in between and got back to Protopic again when it flared up. (Going through the burning and crazy itchiness as well) I had all the weird sensations as you have described. I’m actually quite scared to use it over long period. So I tried to go for natural pathway- salt bath for hands. It didn’t help much in improving the hands (maybe I did it 3 days only). However, I get back to Protopic again today. Yes, the burning and itchiness are crazy as well. Sometime I wish I could just go to sleep/loss of conscious for months and let the skin heal itself.
I wonder if that would work? Could they just you under and your skin would heal? I have looked into topical steroid withdrawal but I don’t think I could cope with that and work full time. Good luck with the protopic. I’m trying using it all over which is using up loads of emollient but seems to be helping.
Oh Ruth! You poor woman and poor all of us who are going through such painful rashes! I just want to point out that you said, even after using Protopic, “I have found that eczema has ‘moved’ to other parts of my body…”
If its moving, and you are using even more Protopic to keep up with it, that means that its failing you, and will probably one day fail you altogether, sad to say.
The red face and the red body flushing you’ve described are classic of Red Skin Syndrome/Topical Steroid Withdrawal. You are already in. You have already BEEN in it for quite some time.
It is hard. It is so so hard. But I wonder if continuing to use this medication is not just going to prolong the suffering? Perhaps you should speak to Dr. Rappaport, and ask him about Protopic and the TSW your body is clearly already battling with.
All the best!
I will do. Thanks Also Red… can I call you that? Have you battled with TSW too? Terrifies me…
Hi, Ruth. I have suffered from eczema for the last 6 years and Ive been using protopic for the better prt of those six. Let me tell you although it is not as bad as steroids, it is still doing damage to your gut health where most of your immune system is located. I have not cured of eczema from using protopic. It is just emporary relief like steroids. This is what Im doing now. I really hope it helps you. Healing from eczema is a long term commitment to healthy living.
http://www.primephysiquenutrition.com
Have a good day 🙂
Hi Yung, I have noticed gut changes, though doc would dispute this. I am weaning myself slowly off the protopic and now only use it at weekends but I’ll check out the link you share above. Thanks so much for the comment.
hi Ruth,
I’ve had eczema on my face for about 8 years. I have used different types of creams(mostly containing steroids) and it’s gotten my skin so thin, but Protopic was actually great! It’s about 6 months that I’m using it and It’s had great results. What I’m wondering is that , Is this really okay that we use it for long-term? Is protopic actually a Miracle in this matter? I read some of your comments and it seems that you’re using it for about couple of years. are u still using it ? have u experienced any side effects? Has ur skin gotten thinner maybe? It’d be great to hear from you, please give us good news 🙂
Yes I am still using it. Probably nearly two years now. But now I’m only using it as a boost at weekends and trying to eeek it out longer. My doctor/dermo says there is no danger in using it more and would be happy for me to continue using every day but I don’t feel happy doing this. I have a horror that one day it will stop working or they will take it away from me. I would hate to go back to the red mess my face was before I got Protopic. Not such good results on the rest of my body though.
hi Ruth….thanks for such a great and informational article…..let me ask you a very quick question (pardon me if it sounds like a repetition):
is there any withdrawal effect of protopic (as there are very severe withdrawal effects of tropic steroidal creams)….i have been using mild steroid creams for almost 5 years, but now, they are no longer effective and i am forced to switch to protopic…so i am little curious about the long term effects of usage, and, withdrawal effects of protopic…. (i am specifically talking about the face eczema)
Best Regards
Hmmm… I’m not sure. I have been tapering down my use to just at weekends and not notice any side effects. I do sometimes get the flushing and my skin can go very red for no reason sometimes and then calm down. I wonder if this is as a result of using protopic? I will ask my dermatologist when i visit in December. Though he glosses over that stuff 🙂 I’ll do some research. But nothing comes without some kind of price… sadly.
Hi. I’m delighted you’ve had such a good response to Protopic and to the article (I haven’t read the comments yet – I’m replying while my son is busy and will read the comments later!). I’ve had a very similar experience but found this thread because I was googling the effects of alcohol with protopic.
I don’t drink a great deal, but a – ie one – drink on a Saturday night (at home) is one of life’s little pleasures. I’ve noticed that on Sundays my face is often aggravated and the penny has dropped that it’s the alcohol working with the protopic. Due to family & business stress my skin has been bad for weeks now so I’m using protopic more than I would usually, and probably also welcome a drink more than I would usually. Clearly this is a bad combination.
Trying to get to the bottom of eczema is a huge task that most of us have undertaken and there are lots of schools of thought – most of us will have encountered at least two conflicting theories in various doctors’ and specialists’ consulting rooms. In my teens and 20s I tried every exclusion diet, every homeopathic remedy, every cream and steroid, even an isolation ward, tampezepam to help me sleep and vast doses of steroids to clear possible infections. Much of it was NHS, some of it private as my mother tried every avenue to find a solution. From my 30s, with a family of my own, I just asked for the heavy duty creams and plastered them on to keep the flare-ups to a level I could cope with. In the photos when my daughter was a baby (she’s now a teenager – with perfect skin) my face looks like yours does above. I was a breastfeeding wreck and couldn’t use anything. It didn’t help that DD refused to be weaned until 9 months so I was very restricted in what I could use.
Four years later I became pg again and had two difficult years of prolonged miscarriage and pregnancy, but with one silver lining – my skin was incredible. I went on to have the most gorgeous baby boy (who’s now nearly eight and has a touch of eczema) and when I was pg with him and until he was about three my skin was fantastic. I wondered if it was the testosteroneand maybe the losses had been male too? They were too early to tell.
These days I’m still settled in the ‘give me the drugs’ state of mind as I have too much else going on to devote myself to Project Eczema in the way I did in my teens and 20s, but I do still read the odd article. I’m interested in the leaky gut theory, which some medics dismiss as nonsense and others hold responsible for many health problems. The problem I have really with this is that eating to cure it would be too expensive and incompatible with family life that already includes vegetarians and coeliac disease. I think there’s something in it though. I’ve started avoiding dairy in more than the odd bit here and there (I like coffee with double cream a couple of times a week, I have butter with bread/toast most days and the odd cheese sandwich with a soup lunch) as it makes my tummy very unsettled, and therefore probably doesn’t help my skin. Perhaps I should be guided by my stomach? Sounds daft but maybe…!
Hi Ruth,
Just thanking you for writing this article and letting you know that I will be trying tacrolimus intra-nasally. I have had really bad constant sinus infections for around 15 years now. For the first 5 or so years topical steroids managed this, but then I stopped responding to them. I have had allergy skin prick testing which turned up positive for house dust mite proteins, cat dander, and birch pollen. I did 5 years of allergy shots (allergy vacination) whereby and allergy clinic injects the offending protein sub curtaneously, hopefully inducing IgG antibodies against the protein, preventing IgE antibodies initiating an allergic airway reaction.
But allergy shots did not work for me. So my clinic suggested tacrolimus in almond oil (this can be filtered so that it is sterile for use in the eyes). I will be putting the drops up my nose. Fingers crossed.
Hello,
I am curious about Your sinus inflamation did You manage with sinus problem?
I have been using protopic for more then 10 years, all side effects happened, but since my doctor change to 1% I am suffering of constant sinus inflammation. I have such problem each two month or even often.
How to overcome it?
I don’t think I get any sinus inflammation… is that a known side effect. Anyone else have this?
My dr said that it is probably an effect of local suppression of immune system, so I am fragile to infection. Moreover they have given me nasal steroids to overcome an inflammation which reduced or killed my immune layers (sorry I am not able to find right meaning) inside nose.
But dr said that there is no other trethment for me (I use protopic for more than 10 years).
A.
Ruth, this might seem like a strange quesiton but do you have an empty tube or box of protopic that you could send to me? The reason I ask is I’ve been refused protopic in the past (despite having eczema all my life). I’m convinced that it will help if I go to a new doctor and show them that I have “used” it in the past. I had a similar experience with a medication called isotretinoin which is prescribed for acne. I was refused it again and again until I went private (and they prescribed it within a few minutes). I then switched to the NHS and saw my GP and what do you know… they prescribed it as I had already started the course. I could go private again, this time for protopic but it’s £120 just for a consultation.
Update: I had an appointment this morning with a nurse practitioner and I’ve been referred to dermatology for protopic! It’s 18 months since I first posted on here and more doctors appointment than I can remember. Hopefully things are going to be ok now.
Finally got protopic. Saw a specialist nurse on Friday, now today (Monday) I have two tubes of protopic 0.1% ointment. Even better, it was on a normal prescription (not private) so only cost £8.
I can’t believe how simple the process was. I’ve been denied protopic by GPs in the past for no reason. I saw a nurse practitioner this time, she referred me to dermatology and there were no questions asked really. My advise is to see lots of different GPs until someone refers you.
I was here before, thought give u an update of my experience with protopic. Im using it for 2 years now. I looked just like Ruth on the pics. I used steroid creams for nearly 20 years, I started protopic at 32. I never looked back since, and I wouldn’t stop using it even if it had worst side effects. Initially I had palpitations and burning sensation on my lips, in my mouth etc. and it lasted abt. 2 months. These days I don’t notice anything like that ever. Its like putting vaseline to my face. It seems the eczema from my face migrated to other areas on my body (nipples, elbows, chest mainly), if I apply protopic there too it would disappear within days. I tried to reduce the use from every day to 1-2 nights a week but the eczema comes back quick. So here is what I find works for me:
– only use it at night. I tried it many times during the day, but I couldn’t see it work than.
– U have to apply some sort of moisturiser. It important to try to stick to the same thing. Garnier moisture and nourish daily rich moisturiser works for me in the mornings and I use aveeno during the day if needed. Just find whatever works for u and stick to it.
– don’t apply anything on the area before and after using protopic for 2 hours.
– I don’t use any skin cleaning products, and I don’t really use make up. I wash with water, or maybe with something my GP prescribed.
– if I go out I try to avoid protopic for 3-4 days. I find I would go red less and less if I have a drink consecutive night. Sometimes I don’t even go red. I find if I don’t drink for longer periods it would effect me more when I do.
– same for the sun. If you go for hols. I suggest u have a rest beforehand of protopic, and even on the holiday seriously limit how much sun your face gets. (honestly you can get burned on your face quickly and it will ruin the rest to the holiday – I learned it on the hard way lol)
– I use protopic 0.1 every other nights. For the first sign my skin getting worst I apply every night.
– I started to get Botox. Years of steroid creams left me too wrinkly to my age. I was seriously worried about it at first and couldn’t really find any info on it. I need Botox appx. every 4 months. It doesn’t make me red, no rush, nothing at all. Sometimes its little bit itchy on my forehead, nothing too bad. I avoid protopic for a couple of days before treatment.
I find this site the most helpful and from time to time I come back to read the comments. I hope my comments can help for some.
Hi guys. I have never found anything as informative on this treatment. Always suffered with eczema used steroid creams as a teenager as was so conscious, then was prescribed protopic 2009. It changed my skin. It was amazing, still on it until 2017in August as I wanted to try and come of it I feel like my skin is so damaged from the steroid use. I have a really bad flare up as I’m seeing a skin therapist who is using Blue led lights which has helped. But I’m really allergic to a lot of products, anyone else find this? Anything I try I react too? I have just used protopic for this terrible flare up. Looks like I’m back on it again!
Hi guys. I have never found anything as informative on this treatment. Always suffered with eczema used steroid creams as a teenager as was so conscious, then was prescribed protopic 2009. It changed my skin. It was amazing, still on it until 2017in August as I wanted to try and come of it I feel like my skin is so damaged from the steroid use. I have a really bad flare up as I’m seeing a skin therapist who is using Blue led lights which has helped. But I’m really allergic to a lot of products, anyone else find this? Anything I try I react too? I have just used protopic for this terrible flare up. Looks like I’m back on it again!
Hi Vicky, I too am trying to wean off protopic and can go a few weeks. I keep the maintenance dose of using it once on a Saturday and a Sunday morning. It really has changed my life. I get the odd flare up but NOTHING like what it used to be like. I just get kind of sore red bits around my mouth as if it’s reacted to something I swilled to quickly, drank and it poured around my mouth. it’s weird. But so so much better. I can face the world, literally and not have to worry about the eczema that used to cover my face. It really has changed my life. Incredible stuff. Shame it doesn’t work on the rest of my body. WEird that.
Hi – I too am a life long eczema sufferer. Over 3 years ago my skin was deteriorating rapidly and I was in agony. I saw a dermatologist and she wanted to put me on azathioprine to give my skin a break from the steroids. I read about the side effects of aza and following research on Itsans website I decided to stop all treatment. Bad news – within days I was acutely unwell – bright red, having rigours, swollen and oozing. I looked like a monster. My heart rate was 150 whilst at rest, I stank from the smell of infected lymph, my eyes were swollen and my kidneys started to get affected. What happened? Well I ended up on antibiotics, oral steroids, topical steroids and azathioprine etc – everything I wanted to avoid! Years ago I would have been admitted to hospital but my consultant said I was too ill to be admitted to hospital – risk of infection – and needed 24 hour care by my family – high fluid and high protein diet – unable to move – even needing rolling over in bed as I couldn’t do it. My advice to anyone going cold turkey is – don’t! unless you have someone medical who can hand hold you through this. I nearly died and my life since has been defined by that experience. The azathioprine was amazing for me but after 18 months my immune system really struggled and I got pretty sick and had to come off it sadly! I am now trying Protopic and getting on well with it in my scalp and face – not sure about my arms as they feel itchy and reactive after using it. My dermatologist says there may be some more treatments coming up in the next few years so fingers crossed! By the way having a private dermatologist has been the best money I have spent – and helped me feel that I am not alone with this. The NHS isn’t good with acute dermatology.
Hi Adelle, I am so sad to hear about what you’ve been through. I’ve watched other people sharing pictures and their journey coming off steroids and it terrifies. I cannot go through that. It would destroy my life. I would not be able to work. It’s just not feasible. How do they do it? I’m terrified. Sadly protopic doesn’t really work on the rest of my body very well though i am persisting with trying. Interestingly I just had a contact from ITSAN so am planning to blog about it shortly. I think it’s so dangerous what they advise and told them so. I’ve heard some horrible stories. Not sure my dermatologist would support me through this. He’s a ‘use more steroids’ kind of guy so I’m not sure he’d get it. Thanks so much for getting tough. Comments are so lovely to receive. Good luck with the protopic and I will look into Aza
I’m a lifelong atopic eczema sufferer and Protopic also changed my life when a wonderful dermatologist prescribed it for me about 14 years ago. I guess I’m lucky because it seems to work for me on any part of my body (I get flare-ups just about everywhere). I now use it as sparingly as possible as a preventive treatment i.e. a twice a week application on all the areas where I usually get problems. I increase the treatment if I get any flare-ups. My only (minor) gripe is I don’t like the greasiness of it – I find it difficult to apply evenly, particularly on my back and also leaves clothes stained etc. I wish it was available as a cream but my doctor says it needs to be an ointment for the most efficient delivery of the active ingredient to the skin. Anyone any ideas on better application techniques? By the way, I still get the same side-effects of increased localised but temporary itching/redness and also seem more sensitive to hot and cold for a few hours after application.
Protopic is a frikking miracle cream. I am a new user and it hands down beats any steroid cream i have used and my psoriasis is in a rather “delicate” southern area if you catch my drift.
I had to go private to get it as GP’s just would not prescribe it! Worth every penny. Imagine the feeling on your face, but not on your face – i have lived with that for years and finally something works. Mind you I had to go through steroid cream withdrawals first which were utter hell, made far better and manageable by protopic!
Good luck!
I’m so glad it’s helped you too. It literally changed my life. I’m not joking. Just wish it worked on the rest of my body. Still trying to persevere with that but it seems to be best for face skin.
https://www.yourlawyer.com/defective-drugs/protopic/protopic/
you guys shouldn’t use this stuff. it’s POISONOUS.
hmmm,,, you’d know all about poison in that profession.
Thanks for the warning. I’m now over 2.5 years into a horrible withdrawal… wish I’d never used it.
Hi, i have been suffered from ezcema on and off on face and neck for couple years. I’ve been using Protopic for about a month now. I have to use it twice for 3 days and my face will be clear for 2 days. I tried to go natural for the last 7 days and ended up with horrible angry red face and neck which I never experienced before. I always wonder how people can wear it off. I have been having a very clean diet, seeing Chinese doc, taking supplements and they didn’t seem to help at all. I feel very frustrated and can’t see the end of tunnel.
Does anyone get the same experience?
I’ve read so many of these replies and can do relate! I’ve had eczema all of my life but it’s only gotten worse in the past 10 years. I’ve discovered several chemicals and preservatives I am allergic to and avoid them but still get eczema. In January I started Dupixent which is a new biologic injection given every two weeks and it’s working. I had angry red skin all over my body so badly that I couldn’t put clothes on. I feel like I’ve got new skin! It’s amazing! I’ve been keeping a diary and have noticed my angry red face shows up the weekend before my Wednesday injection. It’s consistently done that 3 times now so I’ll let my doc know at my next checkup in a week. I use protopic when it does flare up and get so frustrated with the red flushing while having wine or even NyQuil!
Hi Sue, thanks for your comment. Mine seems to be getting worst too which is very frustrating. For my face though, the protopic seems to help and I use it very sparingly, once a twice at weekends and can often leave it longer. I only get minor flare ups around my mouth if I don’t but wonder if there is any long term harm in keeping on using it. Oh the red wine… so annoying but worth it for a nice glass of merlot 🙂
Hi all,
First off thanks to all of you for sharing your stories – really insightful stuff and always nice to know you’re not the only one.
I’ve suffered from eczema all my life and was on different steroids daily for 7 years prescribed by my GP – which after finally seeing a dermotogist I found out I should have never been on and that these actually worsened my condition in long term. That was five years ago, and since then I’ve been on only Protopic applied 2 consecutive days per week. I had to stop steroids completely and had a two week period that I couldn’t use anything before starting Protopic – which was agony as I’m sure you can imagaine.
In the last year though Protopic 0.1 has not really been helping me though, sometimes never really absorbing into my skin and just sitting on top for hours on end – I did notice that colder temperatures help absorption though. Has anyone else noticed themselves becoming immune to Protopic after long term use? Are there any new alternatives out there- I was particularly interested in seeing the above post by Sue B about the Dupixent injection – has anyone else used this in the UK? Apparently it was rejected in April this year by NICE and is not available through the NHS – does this mean it’s available through private healthcare? Would love to hear any of your thoughts. 🙂
Hi Shane, no I don’t know of any alternatives, though I am considering cutting out both steroids and Protopic as i don’t think either can be good long term. If I discover anything else I will you know. It’s all so scary as the doctors just suggest another drug, as if they’re testing stuff on you. I really believe we can heal from the inside out if we know what’s triggering it. It’s finding out that what! that’s the key. I am in a long process of destresing my life which is hopefully going to come to fruition soon. Then I want to remove my amalgam fillings. Then we shall see. It’s a journey
Hi I just wanted to know how it was still going with the protopic, and how much protopic do you use on the face, per week?
I use it once or twice at the weekend. That’s all at the moment. Thinking of reducing more and possibly using on rest of my body.
Hi Ruth. I know the last comment on here was a while ago, but I’m wondering how you’re getting on tapering down on the protopic? As my derm told me to use for 4 weeks until it’s gone, then taper down slowly for 4 more weeks and then stop using. But I’m scared to come off and have everything come back again! However I also don’t want to use it long term as i’ve read online the longer you use it the harder it is to taper off without a withdrawal effect.
I have started the Dupixent injections two weeks ago and will be starting the Protopic cream tomorrow. I have been suffering with eczema all of my life and am currently in a flare-up that has also placed me back on a step-down Prednisone treatment as well since this flare-up has kept me out of work. In several conversations with my dermatologist and comments from Dupixent patients, the combination of using both the Protopic cream and Dupixent injections have been positive life changers in the fight against eczema. I am truly looking for better quality of life going forward than the decades of suffering from eczema. I will be happy to keep everyone updated regarding my progress if I can find find this discussion board again.
Apologies for not responding sooner. I really wanted to reach out to you because it’s been a long time since I used protopic. It did really help at the time, but I felt in the end it was just another mask for my skin. Have you been using topical steroids for years? I had too and decided in Jan this year to cut out topical steroids and protopic. It’s not been easy and I’m still going through withdrawal but ultimately I feel these products both mask symptoms without addressing any root causes of the eczema. In my cast, prolonged use of steroids had me in the grip of continued and worsening flares whenever I tried to stop using the steroids. I urge you to investigate and check out the ITSAN website. Good luck with the Dupixent. I know it has worked really well for many. I’d love to hear how you get on too.
Hi, I’ve been using Protopic for 10 days now on my face and it’s fantastic, cleared the ezema up. Next week, however I have to use twice a week until I go back to the dermatologist in February. Can you help me with two questions please. Firstly on the days I don’t use Protopic can I use my usual moisturisers again ( clarins ) and make up? Secondly , I am due to have highlights in next few weeks , will that be ok if it’s the day I have to use Protopic . Sorry to ask these questions I font want to ring the hospital up to ask. Thank you
Hi Dawn, I’m no expert but while I was using it I used my normal moisturiser on other days. That should be fine. As for hair highlights, i can’t see a problem. Always do a skin patch test if you’re worried before going full head as the dyes in hair products can cause horrible reactions. Good luck. Just to say though, I stopped using Protopic in February as part of my choice to try to go free from topical steroids and any other creams. Withdrawal is tough. Hope your skin continues to improve.
Thank you Ruth . Just out if
interest his long did you use Protopic on your face for in total
Hi Dawn, probably for a good 4 years. I’m not sure about long term effects of using it.
Thank you Ruth, my face was exactly same as yours by the way and I put up with it for the best part of a year, this week I am to stop using daily and use twice a week, my skin is absolutely amazing so soft and no itching any more, going out without make up no longer worries me . My eyelids have improved as they were red itchy sore and swollen before and so has around my mouth, just a shame rest of my body is full of ezema , betnovate not helping one bit . No comments anymore of ‘ oh your face looks really sore and red’ . What a complete turnaround
So this is for Ruth, as I been using Protopic for a bit over a year it has seemed to burn in the cold winter air, I’m considering getting off of it and if I do what should I expect, is there a massive symptom return, did you have that experience?
Hi Matthew, I did have symptoms returning but I’m not sure if what I’m experiencing is Topical Steroid withdrawal or Protopic withdrawal. I only ever used PRotopic on my face and my face is by the worst affected area at the moment. But I wanted to come off. I weaned. So depending on what dose you are now, if you were using twice a day. Reduce to the dose at the weekend. Do that for a few months and see if it’s OK. Then reduce again to once a fortnight, then once a month. See what you can achieve. I hope if you go slowly you can help your skin adjust to not having the stimulus any more. I don’t know of any advice on coming off Protopic anywhere, I’ve searched in vain. Oh and if you are on the normal strength, there is a lower strength percentage so you could consider also weaning slowly onto that. I hope this helps. I did wean quite a bit but then in the end, when I was using it once every few weeks I went cold turkey in April last year. It hasn’t been pretty but I knew it would be hard. I wish you all the best luck with this. It might be worth asking your dermatologist of GP about your concerns. And ask them for advice on coming off it. Good luck!
This thread is quite old but I thought I would mention my experience with treating facial dermatitis. I started to develop dermatitis around my mouth when I was coming off Accutane 7+years ago. It seemed to be a reaction my skin was having to the increase in oil production. I have quite oily skin naturally that tans very easily. The rash tends to affect the upper lip and can sometimes progress to the side of my nose and just under my browbone or eyes. The worst flare was caused by a secondary bacterial infection that was treated with Doxycycline – also a mainstay treatment for peri-oral dermatitis. It cleared up the infection almost immediately and I have continued to take Doxycycline to treat flares. However, I’ve developed a secondary inflammatory skin reaction to Doxycycline and Sulfamethoxazole and Trimethoprim which was prescribed as an alternative. So, we started treating flares with a topical application of Metrogel 1% (Metronidazole). The Metrogel seemed to be working miracles without the added concern of having a secondary inflammatory reaction until recently. The rash doesn’t seem to be responding to the topical application OR the 10 day course of Teva Cephalexin the doctor prescribed. So, the doctor at the clinic prescribed Protopic (Tacrolimus 0.1%).
The black box warning was not discussed with me by the physician or the pharmacist and they did not include a package insert along with the tube of ointment I received. I’m located in Vancouver, Canada. I find that quite concerning. Especially since I have a history of lymphoma in my family and would not have considered using the drug had I been adequately informed. My grandmother and both my aunts were diagnosed with breast cancer. I’m 33 years old and have already lost 2 partners to Cancer – lymphoma and synovial sarcoma. I’m struggling to find data to conclude the obligation for physicians and pharmacists to disclose.
I could maybe understand prescribing Protopic as a last resort for someone who is experiencing a debilitating Eczema flare that is disfiguring or causing a lot of physical discomfort in a patient. But, for a relatively superficial eczema flare that generally responds to oral or topical antibiotics, I find it concerning.
I used the medication twice before I became aware of the associated risks. I did not experience any tingling, itching or burning. It seemed to improve some of the inflammation by improving the overall tone of my skin – redness improved. But, I would not take the risk of continuing to use an immunosuppressant which alters my bodies defenses and could lead to serious more life threatening side effects down the road. It was also quite expensive at $117 CAD.
The drug should not be prescribed unless consent is obtained by the physician and all relevant information is disclosed. In my opinion the drug should be banned in Canada for dermatological use. In this instance – the benefits do not outweigh the risks.
I wish I’d never used it. My withdrawal is ongoing and now at 3.5 years TSW. The addition and long term damage caused should a patient wish to stop using this drug is awful. And this is not in the warning documentation for the drug. Thanks so much for your comment and hope your skin is healing now.