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, and also Protopic Withdrawal, I have been blogging since Feb 2019 about this journey so visit the TSW tab in the Categories in the side menu and also my TSW – Frequently asked questions section..
I’m just leaving these old blogs here to catalogue my journey because I know many will want this drug initially as it is a magic cure. You are not alone. Listen to your gut and your body and choose the right medical treatment for you.
Most people with moderate to severe eczema will have heard of Protopic. If you haven’t yet come across it it’s an appealing treatment – it’s not a steroid and I was told that it doesn’t thin the skin like steroids do.
I first discovered it when my sister was prescribed it to treat her eczema. She raved about it and said it was a miracle and worked really well, with a warning that it burns the skin at first but this reaction slowly fades so that it stops burning. She loved it so much, when I asked her to tell me about Protopic she said, simply, “It’s amazing! The difference for me on my face was phenomenal. I now rarely use it – once every few months if that – went down to 0.3 % quite quickly.”
My doctor, however, has been reluctant to prescribe it, stating that my eczema was “not flaring up badly enough or often enough to warrant prescription”. I pointed out that I only visited him to beg for steroids when it was really bad and managed to self treat my flare-ups most of the time without needing to consult a doctor.
Maybe he didn’t believe me. Maybe I didn’t need it at the time, but I suspect it has more to do with the cost of this ointment. It is far more expensive than normal steroids. In the last two years I have finally been referred to a real dermatologist and he has just prescribed me the magic bullet treatment – Protopic. I had almost given up hope of ever being allowed to try it.
So what is Protopic?
Protopic Ointment is a prescription ointment used to treat moderate to severe eczema. Protopic is for use after other prescription medicines have not worked or when a doctor recommends that other prescription medicines should not be used. Protopic should be used for short periods, and, if needed, treatment may be repeated with breaks in between. Protopic is available in two strengths. Adults may use either Protopic Ointment 0.1% or 0.03%. Children 2 to 15 years of age should only use Protopic Ointment 0.03%. Protopic should not be used on children younger than 2 years of age.
It contains the active ingredient Tacrolimus monohydrate which is an immune suppressant, not a steroid. So it is safe to use on the face and body and will not thin the skin like steroids can.
The way it works is to reduce inflammation and relieve redness and itch.
You can find out loads more information here https://www.ema.europa.eu/en/medicines/human/EPAR/protopic. Please note that there are currently NO warnings on this product information leaflet regarding Protopic addiction and withdrawal but please be aware that if you start using this your skin may become addicted, as mine is, and a lengthy and painful withdrawal may be the only way to recover.
What are the side effects?
On first application Protopic can cause the skin to feel hot and itchy; people report a burning sensation on application. You can be allergic to one of the ingredients so if redness, itching of flushing persists stop using it and speak to your doctor.
My own experience was that it didn’t burn at all when I first used it on eczema on my back, however I did wake up later on very itchy, hot and it felt like there was an allergic reaction where the Protopic had been applied. I wasn’t expecting that as such a delayed reaction but it could have just been the reported burning side effect.
I have just applied a small amount to some eczema on my forehead, cheeks and chin and again, it didn’t really burn or itch. No more so than the skin was itching anyway. I certainly feel able to ignore the itch and it isn’t bad enough to make me feel I need to scratch.
However I do keep checking in the mirror that it’s not getting worse, it’s hard to ignore something that stings on application, as normally this a sign to wash it off immediately and stop using it.
To have a product which provokes a reaction on your skin which is the very symptom you wish to get rid of is a bit of a contradiction, but eventually the skin stops reacting in the same way, inflammation should reduce and itching recede. That’s the idea anyway.
I found this blog from Eczema Excellence useful and interesting, “Protopic, paranoia and obsession”.
I have high hopes for this ointment so fingers crossed it will have a positive effect on my skin. Has anyone else used it? Did it work for you?
My facial “eczema” was rosacea aggravated by allergic contact dermatitis (ACD is actually eczema). Ever been patch tested? You might be surprised.
I have been patch tested and they didn’t come up with much at all for contact dermatitis. I swear my skin felt like it was crawling, but by the time they removed the plasters to look they said there was nothing to show. It wasn’t that long ago that I had the tests done. Not sure yet if Protopic is helping me. It’s so red and sore I am reluctant to use it again as it irritated my skin so yesterday. Time will tell. I will persevere for a few more days.
Sad to say it but Protopic was a disaster for me. Patch testing and rosacea meds helped more.
What do you take for Rosacea? I did look into this years ago and came across the Sher treatment but doctor swore it wasn’t rosacea so I stopped researching it.
I tried it on my hand eczema but it wasn’t very effective.
I have stopped it for now, it is making my red, itchy, inflamed skin worse. Maybe I’m just a wuss and can’t ride out the burning… Will try again at the weekend I think.
Today is my first day using protopic 0.01% cream on my face and it is burning, hot and itchy on my face. This has been going on for 2 hours now and i can tell if its a side effect or if its irritating my face.. How long/ how do you know if I should stop this or not?
And it says do not apply to infected areas. I have a patch that has a bit of water coming out (ooze?) And when it dries its yellow. Does that mean its infected? I applied protopic to it..what happens if I applied it to an infected area?? :'(
Help!
I didn’t get much burning sensation at all but my sister did when she used it. She said the burning lasted a few hours after applying. She managed to carry on using it and the burning sensation reduces over time and now doesn’t burn her at all. She reduced the dose and also reduced the regularity of applying it and only uses it occasionally now. I am not sure it’s working for me. It doesn’t burn me, but I get nodular prurigo which comes up regardless. I also get flushing caused by foods which could be rosacea or eczema, I’m not sure. Nothing helps this and nothing stops it. I just have to wait for it to go. One doctor recently told me you need to heal any infection with steroids first before using Protopic. I’m sure you will come to no harm but this might be why it’s burning more. It works best if you get rid of really bad eczema before using. Does this make sense? All a bit confusing isn’t it?
Hello Ruth. I’ve just read your article in the SkinsMatter newsletter. I have used Protopic on my face since it first came out about 10 years ago. I have had eczema on my body since I was 7 (I’m 44 now), but 14 years ago I started to have attacks on my face. I sometimes had to have days off work because it looked so disfiguring. My dermatologist prescribed Protopic as soon as it came out. I now find that if I start to get any eczema on my face I apply a little Protopic and by the morning it has gone! I have found it not to work on my body. When I’ve used it on my hands, they’ve felt uncomfortably hot and cold next time I go in water. Eumovate is better for them. I also swear by Pai Skincare and the Avene Rich Recovery Cream. Both ranges are very pure and help to keep outbreaks at bay. After nearly 40 years of steroids on my hands, they are very lined, so I am so pleased I do not need to use them on my face. I’m so pleased that Protopic has worked for you. Eczema can be such an uncomfortable and confidence-sapping condition. It is fantastic to be able to control it. Kind regards, Sophie
Hi Sophie, my eczema story has been similar to yours. Awful having it on your face like that. Protopic has really helped but it seems to work well on my face and less well elsewhere. I too was in too much pain to go out when it was bad. Working for myself meant I could keep on going but was having to cancel things. Not giving back the Protopic. It is amazing. Just about to start reducing the frequency so fingers crossed I can get down to where you are with it.
, under my eyes are red and swollen, am about to use Protopic any comments.
Hi Sharon, I would strongly advise not to use it under your eyes. That is very sensitive skin there and I really think protopic has damaged my face really badly. What have you tried so far? I love Balmonds (my code WHATALLERGY for 20% off) or Lyonsleaf (my code WA20 for 20% off also) https://whatallergy.com/affiliates/
I thinkj Protopic causes TSW just like topical steroids do only I’d say it’s worse to recover and heal from. Check out https://whatallergy.com/tsw/ if you want to read more. I’m not a doctor my experience, whilst starting out good, was awful when I tried to wean off it.