We hear a lot about topical steroid withdrawal, but little about Protopic withdrawal so there is hardly any research existing about what happens if a person decides to stop using Protopic. This is my analysis of my own usage and withdrawal from Protopic so far… and counting…
I can’t even prove that the problems I’m having with excessive burning, inflammation, crusting and flaking on my face is caused by Protopic at all because I began my eczema journey using topical steroids so these symptoms could just be TSW. You can get withdrawal from only using Protopic though, and no topical steroids. Read Dominika’s story – Protopic can damage the skin just like topical steroids can.
The withdrawal process is confusing because you have symptoms on parts of your body where you never had eczema before and never used steroids, this is a common observation between topical steroid withdrawal patients AND those trying to stop using Protopic. It is an iatrogenic full body reaction and can and does cause inflammation and withdrawal symptoms randomly and everywhere!
How much Protopic did I use and for how long?
I had to ask my doctor’s secretary to run this report for me because I couldn’t remember. We don’t record when we get prescriptions, nor how long a tube lasts, how often we apply and where we apply it on the body each time. Maybe we should, it would make understanding a lifetime of use of topical steroids easier to understand.
According to my records I was issued 11 scripts of 0.01% Protopic between Mar 2014 and July 2017 and 1 script of 0.03% strength Protopic in June 2014.
I believe the 0.01% is stronger than the 0.03% script.
- 2014 – Started off using it twice a day, morning and night.
- 2015 – Began to use less, every other day.
- 2016 – Weekend maintenance dose – once a weekend
- 2017 – Weekend maintenance dose – once a weekend
- 2018 – No Protopic issued – this year I was tapering and I did not use up all the medication I was prescribed.
- That’s 5 years use in total
- Approx 2 tubes per year by my estimation
- 2019 in April I quit Protopic for good after tapering to once a fortnight, then once a month, but it had started to stop working as I did this, so I would periodically boost back up again.
I was told it was completely to safe to use as often as I wanted
I was told by my dermatologist that Protopic was completely safe.
That it wouldn’t harm my skin like topical steroids could.
That he was happy for me to use it more often. He often told me I should use more.
But I continued to question this and try to reduce my usage.
It just never felt quite right.
I’m due to visit my dermatologist in February 2022 so let’s see how that goes. I’d love to be able to walk in with significant healing to show.
So where are we now?
Currently about 2.5 years Protopic free
My face is where I used Protopic, nowhere else and its by far the worst affected area. Although the elephant thickened skin is present on the elbow creases, backs of knees and now inner groin and thigh as well us underarms.
In October last year things took a turn for the worst and my face has been flaring ever since. It has thankfully just begun to become more manageable this January 2022 and long may that last.
It’s still flaking and shedding, but no longer oozing, dripping and crusting with such ferocity. To have such a dramatic decline so far into my withdrawal journey has been hard to take but I see it as all healing. It’s got to heal deep into the skin layers and that healing journey is not linear, nor is it gentle and logical.
It’s a rollercoaster and it’s a complete head F**K!
Can you wean off and taper Protopic usage?
I get asked so often, ‘how can people withdraw, wean and stop using Protopic?’ (and also Elidel and other topical immunosupressent creams) and I really don’t have the answers. All I can do is continue to share my experience because I know I’m not the only one quitting this immuno-suppressant as well as the topical steroids. They are both immuno-suppressants when you get down to it.
Are topical immuno suppressants worse than topical steroids?
Are topical immuno suppressants like tacrolimus worse than topical steroids? We don’t know. No one is monitoring this. No one is researching it. No one is listening.
What I do know is that the narrative around Protopic and Elidel is that they are completely safe to use anywhere on your body. We are told to use on our face, and to use as often as we like. Contrary to the advice for topical steroids where even the most gung ho dermatologist will urge caution and usually tell you not to use on your face.
NO one warned us about addiction
But we are out here conducting our own live research project. What happens when you say no.
What happens when you stop?
Because no one ever said to any of us, if you use these you will be hooked. You will never be able to stop using them because your skin will be damaged so much you’d be crazy to even try.
No one told us this could happen.
I’d love to hear from other Protopic users who have quit. What was your usage? How long have you been using Protopic? How long have you been in withdrawal? Have you healed from using Protopic?
I am shortly going to be reporting Protopic to the Yellow Card Scheme, which is a system in the UK where we can report damage done to us be medication. I would urge you to do the same for both immuno-suppressants and topical steroids if you have not already done so. We have to report this issue for things to change.
You may also enjoy
- Let’s talk about Protopic and Tacrolimus by Cara Ward on the ITSAN website
- Cara’s blog of Protopic case studies sharing different tacrolimus users stories is a MUST READ!
- How to report Topical Steroids using the Yellow Card Scheme
- MHRA recognise TSW as a real condition – but not Protopic Withdrawal!
- My TSW – Frequently Asked Questions page
- TOPICAL STEROID WITHDRAWAL – HEALING NATURALLY – NO MORE TOPICAL STEROIDS – NO MORE PROTOPIC