Protopic damages in the same way as topical steroids

This is Dominika’s Protopic Withdrawal story. She became addicted first to Protopic, a topical immunosuppressant ointment. She had previously never used topical steroids. Her skin showed all the symptoms of TSW to Protopic but sadly doctors did not listen to her concerns and she has had a terrible time – going on to use Topical Steroids, as advised by her doctor, in an effort to heal, yet she is still in withdrawal, and her symptoms are markedly similar to those of traditional old Topical Steroid Withdrawal.

This is her story and her communications with her doctor.

She wrote to her doctor to explain her skin history and what she thought was happening and I can’t explain this any better than she has herself so here is her letter:

A letter to a doctor about eczema treatment

Dear Doctor Really Don’t Care Much,

I am writing to update you on my eczema treatment results.

Back in 2014 you prescribed Protopic to me to help “manage” my eczema.

Aided by the copy of my appointment notes, you might recall that while I have suffered from eczema since an early childhood, and while the condition caused me inconvenience from time to time, it never held me back from living my life.

I note that during my appointment with you, I strongly opposed any steroidal treatment (I also note that you did not offer steroids to me) and in response you told me about an immunosuppressant called Protopic. You mentioned that I could use it as often as required and then in few years, if it stopped working, we would “worry” about the alternatives at that stage.

Thankfully, I never had the need to apply Protopic too often and used it sparingly – less than 4 tubes (1.5 of 30 g tubes and 2 of 10 g tubes) since 2014, in fact I had to dispose of the 2 of them as they expired before they were emptied.

At the end of March 2020, I noticed that my body started developing tolerance to the drug and my eczema started spreading very fast. Throughout my adult life, I would only ever have a small patch of eczema in one place at any given time. At the end of March 2020, a number of areas of my body became affected. I might note that a lot of those areas i.e., eyelids, ears, forehead, neck, elbows, shoulders, groin area, thighs, buttocks, back, breasts have never been affected by eczema before. I decided to use Protopic one last time only to see the symptoms subside slowly for few days before my skin got much worse with further areas being affected. For months I attempted to figure out what was happening. I made changes to my diet to ensure that nothing in it was affecting me negatively, I visited countless doctors, naturopaths, skin specialists, spent thousands of euros and sadly nothing was helping. I was getting worse.

Your records may show that on 4^th August 2020 I contacted your clinic in an emergency as the distress I was experiencing at that point in time had me on the verge of a nervous breakdown. I was advised to submit photos documenting my condition and awaited to hear from you. Due to a very busy schedule, no appointment was available for several days and therefore I had to seek to speak to another medical professional as I was in severe distress. I secured a video consultation with a dermatologist on 4^th August 2020.

At this point I think it’s important to outline the symptoms I was experiencing.  

–          Extreme dryness

–          Extreme skin shedding

–          Extreme and continuous flaking

–          Skin cracking

–          Consistent skin redness in the areas of higher vascular and lymph nodes concentration

–          Red sleeves

–          Swelling

–          Oozing

–          Crusting

–          Skin atrophy

–          Excessive skin wrinkling

–          Elephant skin

–          Sensation of ongoing skin dampness

–          Vasomotor rhinitis

–          Inability to control body temperate i.e., being very cold on sunny and hot days (no fever though)

–          Bode deep itching

–          Bug crawling sensation on skin

–          Zingers

–          Burning skin pain

–          Hypersensitivity (pain from the slightest air movement or simply wearing clothes)

–          Insomnia and overall sleep disruption

–          Extreme fatigue

–          Hair loss

–          Hives

–          Depressive thoughts and anxiety

I am sure you can imagine the impact the above has had on my wellbeing.  I choose to spare the graphic details of what I have been going through.

During the video consultation, the dermatologist I saw in August last year diagnosed me with severe eczema and an infection (no skin swabs were performed) and prescribed more Protopic, Prednisolone, Dermovate, antihistamines and antibiotics. I chose not to use Protopic but followed the rest of her advice. My symptoms subsided pretty much immediately, and I got the relief I so desperately needed. Sadly, the day after I stopped Prednisolone, the symptoms started coming back.

Over the next few months, I got prescribed the same treatment two more times, I also went through an anti-fungal treatment for candida and did a lot of testing including food allergy/intolerance. I followed all advice strictly apart from using Protopic. Unfortunately, the symptoms continued to come back.

In November 2020 worried about the prolonged use of systemic steroids, I did not return to seek further medical advice as I was already told that my treatment options were running out (I have no interest in going on cancer drugs like Methotrexate or drugs with common side effects leading to severe eye problems – Dupixent). From there my condition started improving very slowly but unfortunately not linearly.

In May 2021 while researching my symptoms I came across the TWS (Topical Steroid Withdrawal)/ Topical Steroid Addiction/ Red Skin Syndrome. From my research I understood that the condition was first mentioned in medical literature in 1979 in the International Journal of Eczema, however it is largely dismissed and often unrecognised. I researched the work of Dr Marvin Rapaport and Dr Heba Khaled from TSW Atlas who herself is in recovery from the condition.  I note that the British National Eczema Society and British Association of Dermatologists issued a joint position statement on Topical Steroid Withdrawal in January 2021 acknowledging the condition for the very first time. Unfortunately, there is no mention about the condition on the Irish Skin Foundation or Irish Association of Dermatologists websites.

While I am fully aware that Protopic is not a steroid it has caused the exact same symptoms as the ones associated with the Topical Steroid Withdrawal.

I might also mention that August 2020 was the first time in over 10 years that I was forced to take antibiotics, first time in 20 years that I was forced to use topical steroids (my mother was totally against them, so I only used them over a period of 1 week when I was a teenager) and the first time in my life that I was forced to use systemic steroids. Overall, before August 2020 I hardly ever needed to seek medical interventions including taking medications as my health and wellbeing were very good. 

Since the end of March 2020, my quality of life, self-confidence and mental health have been severely impacted by what I have been going through. My ability to socialize, attend the office, conduct face to face meetings with clients continue to suffer. 

In June 2021 my skin started having severe reactions to any emollients or moisturisers that I would have previously used, and I was forced to start moisturiser withdrawal. The redness of the skin subsided dramatically and for the first time since March 2020 my skin was not in pain. I continue to experience flares, itching and flaking but to a much lesser degree, and for the 1^st time in 16 months the skin on my face feels normal, not like a plastic skin. I also do my best to incorporate the no moisture therapy principles recommended by Dr Kenji Sato who has proved to be very successful in helping people with TSW to heal faster.

The purpose of my correspondence is to inform you of the dangerous side effects of Protopic as well as to raise awareness of the debilitating condition which so far has robbed me of 16 months of my life.

I further note that according to my research this debilitating condition can occur from using not only topical steroids but also systemic ones as well as other immunosuppressants. Sadly, not enough research is available in this area at present.  

I also wish to advise you that I reported the side effects I experienced to the Health Products Regulatory Authority.

If you are unable to comment on any of the above, I would sincerely appreciate that you acknowledge the receipt of my e-mail in writing. Kind regards, D.

Her doctor’s reply

“Thanks for your insight. I only saw you once in 2014. I hope everything is going  better for you.
Regards,” Dr Don’t Really Care Much

That’s it. That’s all he said. Pretty much wiping his hands of any responsibility, culpability and going about his job without a further thought.

What happened next is worse

In September 2021, 3 months into moisturiser withdrawal and incorporating elements of MNT excluding restrictions on liquid consumption, I felt that I plateaued. I was still uncomfortable and miserable with the back of my ears, earlobes and areola actively weeping. My personal circumstances and a combination of a direct and indirect pressure from “well” and well wishers made me decide to, once again, go on a crusade and find a way of making myself better quicker.

I found a specialist dermatology clinic in Poland. On their website I found references to TSW which as I mentioned before is unrecognised in Ireland where I live. Needless to say, I got really excited, called them, asked for a doctor who specialises in TSW, and I made an appointment for late September 2021.

In advance of my appointment, thinking that I was clever, I sent the details of my correspondence with the Irish doctor who put me on Protopic, to the Polish doctor so we did not waste time to go over my history and get straight to my options. The Polish doctor was a kind, compassionate and a well-mannered person but, pretty much immediately, dismissed TSW and said that I must have an infection.

He took skin swabs results of which we were to receive and discuss few days later. He wanted to give me steroids which I refused initially. He recommended bathing in a solution of potato starch and, on alternative days, potassium permanganate. He told me to start moisturising again and gave me some specific recommendations. In addition, he suggested phototherapy which I agreed to commence.

At the end he said that he had to give me a combination of an antibiotic and a steroid in an ointment form to stop the weeping. While I was afraid and voiced that using the ointment would send me back into initial stages of withdrawal, regrettably, I listened to the doctor. He gave me prescriptions for other steroids, I chose to add those pieces of paper to my pile… Few days later with my ears nearly “healed” my lab results were back.

Unsurprisingly, they revealed staphylococcus aureus overgrowth, in fact I told the doctor that this would be typical to TSW (according to my research). I was prescribed a course of antibiotics. I also stopped using the ointment and, lo and behold, my ears started weeping again, the redness and swelling on my face reappeared as they did in the early stages of withdrawal from Protopic. I panicked and went back to him in tears saying that this is exactly what I was afraid of. He disagreed this was withdrawal and said I must have had an allergic reaction to something. He said at that stage I had to take oral steroids. I was so devastated and hopeless that I just agreed. I felt I had no choice; I was away from home and was told to trust the medical advice.

I had loads of debates with the doctor as I attended numerous appointments but, despite my initial conviction that he recognised TSW, at some stage he passed a comment that it’s “something airy fairy, not a “proper” condition”.

As I was planning on travelling back to Ireland towards the end of October, I asked him what options I had if on my return my symptoms were to come back. He gave me loads more oral steroids and asked if I wanted more topicals. At least he never offered me Protopic… I never spoke to him again. On my return to Ireland, while on a 5 mg of Prendisolonum/day I started developing redness and the very familiar ear weeping. I finished the course and went cold turkey again at the start of November 2021.

Few days after I flared badly. My face was quite dreadfully affected but top of my right hand, just beneath the wrist, pretty much opened revealing a bright red, weeping wound. I got extremely concerned this was some sort of a serious infection, so I visited a GP. As my regular GP was not available that day I was met by an alternative doctor. I told her about my condition, she did not deny it, listened and told me she believed me. She told me I had an infection on my hand and prescribed antibiotics. She asked was I done with doctors and would I give another dermatologist a chance. In response I said I would as, perhaps stupidly, I want to try to get an acknowledgement from a dermatologist. The GP wrote an urgent referral which resulted in an appointment being scheduled for mid-February this year. The antibiotic did nothing to aid my healing. The weeping on my hand stopped only last week, and I contribute my recent discovery of high grade manuka honey and its topical application to my healing. My ears are still affected, and I get mainly facial and neck flares, albeit not as severe at this point in time.

“I developed symptoms associated with Topical Steroid Withdrawal following my body developing tolerance to Protopic, not topical steroids”

dominika

If you think you are in Protopic Withdrawal you can contact Dominika on Instagram, however she chooses not to post images on her feed.

We need Protopic Withdrawal recognised as well

Part of me wants to name these doctors here. To call them out. Share their details. Because their responses, care and disregard says it all.

“TSW is something airy fairy, not a “proper” condition”.

A polish dermatologist – gaslighting Topical Steroid and protopic withdrawal

Let’s just let that quote, from a qualified dermatologist, just sink in shall we?

Seriously I’m so angry. How dare he be so flippant and dismissive. And let me tell you… there is NOTHING AIRY FAIRY about these topical drug withdrawals.

And ‘not a proper condition’? I fucking hope we get some confirmation from enough people to prove this gaslighting wrong. Excuse my language but just imagine how that feels, when your skin is falling off, your world is falling apart and you KNOW you are damaged by the very drug you are being continually offered. It’s shameful.

99.9% of GPs and doctors believe their current prescribing pathway is safe. They learnt their trade and will continue to follow it. Yet they refuse to follow Rule No.1 of doctor school… First do no harm and listen to the patient.

If a doctor hears of a patient reporting harm done by meditation, should they not have a duty of care to take that seriously?

I don’t blame doctors for Topical and Protopic withdrawal but I DO blame them 100% for their continued ignorance, for ignoring us, for refusing to listen, to hear, to see what is happening. And for a quite astonishing lack of any compassion or interest of inquisitiveness that something might be true in what we say.

Protopic causes the same withdrawal as topical steroids

Dominika’s story proves that Protopic causes the exact same withdrawal symptoms as topical steroids.

I would like to thank Dominika for sharing her journey with me. I hope it will make some of you take a moment to consider before using Protopic or any topical steroids.

None of us want you to suffer like we are. And I’d love to hear from anyone else who thinks they are going through Protopic Withdrawal. Please share your comments below:

And I’ll leave you with a final word from Dominika

“Thank you for your kind words and compassion and, most importantly, for sharing my story with your audience. I remember when I discovered that Protopic Withdrawal is what I was suffering from I felt so angry and so sorry for myself and the whole community. It took me ages to accept that things like that go on. I will never accept it but making some sort of peace with what took place was vital for my mental health. I will not stop raising the awareness albeit not as openly as the prominent members of the community.” Dominika

Dominika shared her story on The Healthy Skin Podcast

It’s well worth a listen, and I highly recommend following and subscribing to Jennifer Fugo’s podcast as she covers so many areas of skin health. Listen to Protopic Withdrawal – a personal story with Dominika O’Sullivan.

You may also find the following useful

• My Topical Steroid Withdrawal – Frequently Asked Questions
• My own Protopic usage, tapering and withdrawal journey
• Skin on Fire – New TSW documentary – my review!
• New Poetry book for people with eczema and TSW – The Shape of Skin