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.