Protopic, Paranoia, and Obsession

After my recent rash flare, the dermatologist prescribed two things.  The first ointment, mometasone furoate, is a medium strength topical steroid.  I was instructed to ONLY use this for 1-2 weeks at absolute MAX since usually it is not used on the face.  Then I was instructed to switch over to the other ointment once the initial rash had cleared up.

This second ointment is called Protopic.

  Protopic (tacrolimus) is not a steroid, but instead modulates the immune system so it doesn’t react to the things that are causing the rash or eczema.  It comes in either 0.03% or 0.1% concentration.  You can read more about all the science-y stuff online, but in short, it’s been used quite successfully and without the side effects of steroids, like thinning the skin or becoming dependent on them.

I’ve used Protopic before a few years ago, but I kind of forgot about it until I was prescribed it again this most recent time.  My memory is murky, but as I recall the last time, it worked very well.  However, I forgot about the ONE, GLARING, side effect of Protopic.  Reading the literature that comes with the package, this is the most prominent side effect experienced by people who use this medication.

Protopic, at least for the few initial times it is applied, causes a burning/itching/tingling/warming sensation.  It’s nothing too crazy, and it doesn’t happen initially, but it is very unsettling if you aren’t expecting it.  One, you may start thinking you’re allergic to Protopic (which you probably aren’t).  Two, you will want to start scratching the very sites that you’re trying to heal.

Also, even if you put it on, and then get past the slight burning sensation, anything warm on the area seems to “activate” the burning all over again (like if you have warm air on the area, or if you are rubbing other creams on it).

This (for me at least) starts causing a sort of paranoia.  If my face feels burning and uncomfortable, I immediately conclude that it MUST have some kind of nasty rash flaring up all over again.  This then causes an obsession with looking in mirrors, just to be sure that my face is looking okay.  I spent most of the last two months with  crappy-looking skin thanks to my rashes and flares, so I am still not used to seeing skin that looks closer to normal.

Eventually though, after a few applications, the skin ‘gets used to’ Protopic, and the sensations die down.  This is how I will get through the first few applications and deal with the unpleasant feeling on my skin:

  • I mentally prepare myself for the fact that this might burn and itch.  I mentally steel myself NOT to itch or rub the area further and to practice self-control!
  • Or, I mentally permit myself to itch ONE small area.  This is always an area that no one will see, like my stomach, hip, or legs.  I tell myself that if the burning is too much and I MUST itch, I can itch this area ONLY.  (And actually, the Protopic works well enough where I usually don’t do any apparent damage by itching).
  • I mix the Protopic with an equal amount of Vaseline, then put it on.  (A dermatologist recommended this to me after I complained about the burning sensation).  This helps to ‘temper’ the medication and lessen the sensation.  You can then gradually work up to the full amount of Protopic with no Vaseline.  If the burning is really bad, maybe you use 3 parts Vaseline to 1 part Protopic and then slowly increase.
  • I avoid any hot sensations right after putting on the Protopic.  No hot air like blow dryers or heaters, no hot beverages, etc if you’ve put it on your face.  The area under my nose flares up sometimes, and it drove me absolutely crazy to have the warm air from my own nostrils blowing on it and making it feel uncomfortably warm.
  • COLD sensations can help!  For example, this weekend after putting the Protopic on a few parts of my face, I was feeling the burn a few hours later.  Going outside in the winter weather for a run really helped, as it cooled off my face and took my mind off the sensations.

Overall though, I know this is a good non-steroidal medication, and I am going to stick through the side effects and continue using it as needed.

Has anyone else out there used Protopic?  What were your experiences with it, and did you also feel the “burning” side effect?  Do you feel that it was helpful for your eczema?

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37 thoughts on “Protopic, Paranoia, and Obsession

  1. Amanda says:

    I once used my friend’s Protopic (he has psoriasis) and it helped immensely. I know it’s non-steroidal but doesn’t it suppress the immune system? I remember it having some sort of strange side effect that made me not want to keep using it. I didn’t have any burning sensations, though!

  2. Yeah, it does suppress the immune system. I’m not sure how exactly it’s different from a steroid in that they both affect the immune system. I wonder what the side effect that you experienced was…. I know some people online have complained of things like boils and folliculitis, which would definitely be a turn-off to its use! There’s also a big hype that a few people that used it for a long time developed cancer, but no evidence links the cancer directly to the Protopic. I’m not real concerned about that as I plan on using Protopic very sparingly.

  3. Courtney says:

    I use protopic and Elidel on my face and it works really well!! I am at the point now where any steroids on my face immediately cause it to flare up in eczema (lovely). The burning sensation faded pretty quickly for me, it’s great now!

    • ‘ve tried Elidel in the past and it didn’t do much for me, but I’ve been using the Protopic for a couple days and it is working very good, AND my skin seems to have gotten used to the burning sensation too.

      However, I don’t want to end up using the Protopic constantly, so I probably will phase it out as my skin gets better and then start up again if I get a flare. Do you do the same thing – kind of cycle through using it, or do you use it every day?

      Also, do you know why using any steroids on your face cause it to flare, out of curiosity? Did you used to use steroids on your face for a long period of time? I know Amanda’s blog at celiacandallergyadventures had a post about topical steroid addiction and it was pretty crazy to read about people’s experiences with steroids ultimately making their skin flare out of control. It frankly scared me out of using steroids on my face ever again hopefully, although they work great for me in the short term and I’ve only used them pretty sparingly.

  4. Courtney says:

    I need to start weening myself off of it to be honest b/c right now I’m using it every day. I HATE using any medicine every single day. Especially when the FDA changes what they say is dangerous and not every other day it seems!

    As far as my face issue goes, I’ve been using low grade steroids on my face since I was a child, so for over 20 years now. Ick. It’s amazing I have any skin left on my face!! About a year ago I noticed when I would put my go-to steroid on my face (Dermatop) my eczema went completely out of control. My derm thought it may be a case of perioral dermatitis, b/c that is a condition made worse by steroids and it is contracted BY using steroids. So essentially the only thing to really help eczema all of the sudden makes it worse. Awesome. I have tried antibiotic ointment on my face and a few other brands of steroid and they all make it worse. The only thing that helps my face is not using any steroid. I still have a small rash on the side of my mouth that will NOT go away. It’s actually not really a rash, just a red discoloration, but it really annoys me!

    I think topical steroid addiction is terrifying and I sometimes wonder if that’s what is going on in my situation. I’m glad you are weening yourself off of the face steroids!

  5. smes9 says:

    I used protopic a few years ago when my eczema was so bad on my face. My stupid doctor just kept giving me hydrocotisone, even though that hadnt worked since I was about 5. So I googled eczema creams and found that one and got a different dr to prescribe it. I got the burning sensation, it felt like my face was on fire. It did work though. I hope you find something to clear yours up. Ive been low carb for nearly a year and am trying to eliminate all wheat too. My skin has never been better. Even with the cold/warm from the weather and heating hasnt flared it up, which was the norm before.

    • Yeah, at least it DOES work, because that burning side effect is very unsettling! I used some on my legs last night but they began to burn and itch which of course made me want to scratch at them, and I woke up with sore skin from all the itching. But, after a few days I can use it without burning, it just takes some time to ‘get used to’. Wow, that’s wonderful to hear that you’ve not even had flare ups in the winter months with your diet changes. That is when it is always the worst for me – it’s exactly what you mention with the cold dry air outside and the hot dry air inside from heating vents.

    • Ashey A says:

      what you say about carbs is intriguing as I have found that when i do not eat a great deal of carbs my eczema gets better, i looked around for possible reasons as to why this happens. do you think the same?

      • Lia says:

        The idea of carbs and other diet changes is there because carbs, sugar etc. create inflammation in our body…even healthy people should avoid those products, but us, people with skin conditions even more so. I recommend to anyone to see a homeopath or any natural doctor and go on a diet ( or at least avoid foods like carbs, sugar, coffee, shellfish, tomatoes, alcohol). Ive had eczema and psoriases since I was a child and i’ve studied a lot about it through years…As an adult i started eating very clean ( skin only reflects what is inside our bodies, toxins and inflammations), we need to clear our body of toxins ( eating less but organic) and of course forget about sugar and any preservatives and gluten. Eating so has helped me not to have skin conditions come back for years, but lately i started smoking again and had been drinking more alcohol last year so this spring it came back full force…after 5 dermatologists, regular doctors etc I did try this Protopic, it did help in the beginning but as soon as i have wine ( also sugar, also acidity obviously) it comes back. So the button line is first thing diet, the body needs to be clean or skin problems will keep coming back. thanks for this feed to everyone tho very helpful reviews

  6. jtintner says:

    I too have psoriasis and its in one of the worst spots possible. My groin area and rectal area, this cream while great after a few days when needed is the worst pain I’ve ever gone through. I have to do treatments on weekends because it causes me lack of sleep due to severe itching. This last round I did has kept me up for two straight nights. I’ll find myself to fall asleep only to be woken up within minutes to the most intense itching sensation. You may ask why do you put yourself through that? Its the only medicine I’ve found that once applied for a few days the itching stops and after about a week of treatment ill be free of the plague all psoriasis patients dread, flaking skin and intense itching to the point of open skin for at least 3 to 4 months. The sensations to water are a bit intense at times but I’ve managed to cope with it. This last treatment I just applied two days ago has been the worst I’ve experienced though. Does anyone have any recommendations for counteracting the itching? I mean its beyond intense this last application and I can’t seem to get comfortable whatsoever, I’m hoping that someone stumbles upon this and can give me some advice here I’m in so much pain its getting unbareable. I know in could go off it but the results are amazing and for months at a time I’m just holing someone has a solution for me 😦

    • Wow J, I’m so sorry that you’re going through this horrible itching and in such a bad spot. 😦 A lot of people use ice to help alleviate itching, I have found that Sarna Sensitive Anti-Itch cream also helps (but then the effects wear away after a while). I don’t know if you’ve visited the ITSAN forum before (itsan.org), but there are a lot of posts and threads about what people have used for the itching, and hopefully you can find some things that work for you. Best of luck and speedy healing!

    • ruthholroyd says:

      I hope you don’t mind me sharing this, I have suffered with itching rectum area too, I get eczema not psoriasis but they both itch. I wrote this about what I found helped me. I hope it can help give you some release too. I wouldn’t recommend using steroids down there. http://whatallergy.com/2014-01/pruritus-ani-or-itchy-bum-labial-eczema

  7. ruthholroyd says:

    I have just been subscribed it and tried it last night for the first time. Windows shut due to hay fever and I woke up with this amazing burning sensation on my back where I had applied it. Scratched it a bit, couldn’t resist and immediately concluded I am allergic to this stuff but then again, after reading this, maybe I should persevere. It just really feels like one big flare up all over again. Gonna have to steal myself to use on my face. Verdict is out. Thanks so much for sharing. PS. I blog at whatallergyDOTcom so might write about this too and will link to your blog when I do. So helpful. thank you.

    • Hi Ruth, thank you for commenting and visiting! Yes I would say try the protopic for a few more days. The first few days are the worst for the burning and itching but it did seem to help (when I just had eczema, not topical steroid withdrawal). You can also “temper” it with Vaseline or something else so it’s not going on fully concentrated. I am liking your writing on the site! I just read about the coconut ice cream reviews….YUM! Keep us posted how the protopic works for you. Cheers!

      • ruthholroyd says:

        I’m loving it! Protopic has changed my life and I get all fo what you’re saying, I still check in mirrors.

  8. […] found this blog from Eczema Excellence useful and interesting, “Protopic, patanoia and obsession”. I have high hopes for this ointment so fingers crossed it will have a positive effect on my skin. […]

  9. Cheyenne D. says:

    I am so glad I am not the only one who was having these exact experiences. At first it felt like icy hot on my face but without the burning you would get with menthol, and just last night I thought I was going to have to rip my face off because of the itching. It was very difficult not to scratch and I didn’t think I had enough self control but I made it through. How long do these side effects go on for because I can handle the warm feeling but the itching is going to drive me nuts.

  10. Diana says:

    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!

    • Hi Diana, most likely I would think that this is a side effect of the Protopic because the same thing happened to me when I used it. In my experience the burning hot and itchy feeling did start to get less after using the Protopic on the same area for about 2-3 days, like the skin got used to it by then. I am not sure if the patch you are speaking of is infected … I would recommend getting your doctor’s take on that on how to handle if you should apply Protopic to that part or not. I hope your healing is coming along!!

  11. Minette says:

    I applied the Protopic 0.03% on my face last night around 10pm. By 3am my face is burning and I wash my face. Up to now , my face still burning. The doctor prescribed it to me 2 days ago.

    • rose says:

      Hi there. I have had the same thing happen to me. I only used it once, last night (and will discontinue use now that i’ve had that reaction. i’d rather have eczema than feel like my face is on fire) and 14 hours later my skin is still burning. When does it stop? It’s awful :(((

  12. aussiemish says:

    So glad i found this site, I have been suffering from Topical Dermatitis on my eyes and chin for 8 months and it flares badly with any type of seasonal allergies, winter or summer. I have been at my wits end and this week along with another truckload of anti-histamines my doctor prescribed the Protopic 0.1%, he warned me that it would feel hot but told me nothing of the itching side effect, remember I have been itching or trying not to itch for months, so last night straight onto un-moisturized skin I put the Protopic and went to bed dosed up with my copious drowsy anti-histamines. By midnight I had to get up and wash my face as I thought I was going mad, I itched a spot 2 hours earlier and then it was like a bug jumping from spot to spot all over my face, so short of tearing my face off I thought I washed my face. I feel so much better now I have read your blog and will persevere more. Today im at work and have moisturized by skin first, its still itchy but im hoping the symptoms will subside in a few days.

    • Hi aussiemish, I’m very glad I could help you with the info on my blog! As I commented to another poster, the super itchy feeling does seem to go away in 2-3 days as the skin gets used to it (at least that was my experience). You can also blend the Protopic with petroleum jelly to dilute it a little (that was one tip that my dermatologist at the time gave me and it seemed to help). Feel free to keep us posted on how your skin is doing and tolerating the Protopic over time!

  13. I literally can’t believe the dermatologist that prescribed me protopic didn’t warn me of the burning and the inevitable scratching on the first night. It was extraordinarily, and completely unnecessarily, demoralising.

    • Yes, it’s an unfortunate state of affairs that most of us with eczema and or TSW seem to be in the same boat with using these drugs on blind faith and not being warned of the dangers. Thanks for your comment and I hope your healing is going well!

  14. Cheryl says:

    I only use protic for short time… 2-3 days…. When it is very bad. But every day morning and night I religiously first wash affected areas on my face with acv mixed with water. 1 tsp acv to 1 tsp water. This really helps big time. This kills off the fungus. Does burn like hell but settles down soon. Leaves face red but settles down quickly. Works for me.

  15. rose says:

    HI there. Having a horrible experience of protopic 😦 applied it for first time yesterday, intensd burning sensation developed after 2 hours, and has continued ever since (its now nearly 20 hours later in total). When does the burning subside? I’m not going to use it again, but am feeling quite distressed that the burning feeling isn’t getting better. Is this normal?

    • Hi Rose, sorry to hear about your experience, mine was about the same way. The intense burning is so aggravating, I know!! You can mix the Protopic with some kind of mild moisturizer and it will “take the edge off” a little bit so to speak. In my experience, if let’s say you use Protopic once a day, your body sort of gets used to it by the 3rd or 4th day or so and then the burning feeling gets better. Totally normal if you can get through it. My feelings on Protopic are mixed, I am personally of the stance that all drugs or prescription creams should be avoided, but if it helps and brings you a bit of relief that you otherwise wouldn’t normally get, then so be it. However, if you stop using it and then re-start, your body may need to get used to that burning feeling again. Hope that helps and let me know if I can do anything else!

  16. Hayley says:

    I am really glad I found this site.I tried Protopic last night for the first time and was shocked at the intensity of the itch/burn a couple of hours after. Woke up with an even more irritated face and breast area this morning which I felt really disheartened by! After reading the comments I am going to try persivere tonight but I really am dreading it. Last night I had to get up and place a facecloth rinsed in cold water across the sore bits! I hope it clears soon.

  17. adam says:

    I haven’t read anywhere that it may make you sort tempered/on edge…. but I used protopic a couple of years ago and forgot about feeling sort tempered/techie until now. Started to use it again a couple of days ago and Im snapping at my children for no reason. Has anyone else found themselves to have a change of personality when using protopic. And yes I get the burning sensation as well. …. cheers all 🙂

    • Hey Adam, that’s a very interesting observation that I haven’t heard of before. I actually have not heard of any sort of behavioral or cognitive changes with topical medications so that’s interesting you’ve noticed that … wonder if anyone else has had a similar experience. A lot of things are possible with these powerful drugs and I’m sure there are interactions or effects we may not even know about. Thanks for stopping by and weighing in!

  18. Molly says:

    Firstly want to say found this article very useful and has put my mind at ease that I am not the only one experiencing this side effect! I have had eczema my whole life and also hay fever which causes me severe allergic flare ups. After using steroids for years on my neck and face I grew concerned about over use. So I told this to the dermatologist this morning and she prescribed protopic. Since around 2pm I’ve had a burning sensation on my face round my eyelids and all down my neck and it’s 2:30am now 😦 have washed with cold water used an ice pack and applied moisturizer but burning is still very strong! How can I rid of it? And it really depresses me to think that we have to suffer enough with the symptoms of eczema only then for the treatments to cause further suffering or dangerous effects (long term steroid use) !!!

    • Hi Molly, thanks so much for stopping by and I’m glad you found my post useful – however sorry to hear of your experience with protopic! The good news is the body seems to get used to it after a few days and the burning sensation goes down. Definitely a case where the suffering with the “cure” or the “treatment” can be almost as aggravating as the ailment itself!

    • Dani says:

      Ugh so sorry. Mine was really bad and the company even contacted me about it after my dermatologist reported the event. The company ppl were predictably useless and insisted that I was the only person they had ever heard of with the reaction. Please report it to them. I will never use it again. I just use cutivate now which is really effective/gentle. Screw protopic!

  19. Ishaq says:

    Cutivate is a steriod

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