A case of withdrawal from TS, oral steroids and CsA

Here I have a clinical case report which I presented in a small dermatological congress in Japan in 2002.

I was very tired and depressed because I had already seen so many patients with TSA at that time. Still I thought I should appeal to other dermatologists the reality of TSA/TSW which they never dared to look at straight. This is one of such case reports.
The patient was 28 years old. He had been treated with topical steroids since he was an infant.
He was prescribed oral steroids also in a certain collage hospital for 3 years before the initial visit to me. Cyclosporin A was added also before 2 years.

The above photo is of the first visit in Dec 1997. Apparently his skin is clear controlled by topical and oral steroids and CsA.

I was afraid if he was suffering from adrenal insufficiency because oral steroids had been prescribed so long. The rapid ACTH test revealed he did. Serum cortisol before injection of 0.25mg ACTH was zero and 1.5 microgram per deciliter after 15 minites (Normal subject shows 4-20 before injection and twice of it or more than 10 after 15 minutes).

The patient visited to me for the purpose of asking if he should withdraw from steroids. He requested my second opinion. I answered that he should not withdraw cold turkey at least because it is very dangerous to quit all steroids suddenly when a patient has adrenal insufficiency.

He visited to me again after one year in 1998.

According to his sayings, any steroids or CsA had not been decreased for one year. Moreover, his doctor in charge moved and a new young doctor prescribed only the same medication as before. He became anxious and decreased topical steroids by his own judge but the eczema worsened. So he visited to me again.

I tried rapid ACTH test again only to confirm that he is still in adrenal failure.

I changed his oral steroids from betamethasone to simple cortisol which has shorter half-time and help adrenal grand recover. It is absolutely necessary to supplement extrinsic cortisol when a patient suffers from adrenal insufficiency.

Other medication, topical steroids and CsA were scheduled to be decreased gradually. How gradually you may ask to me. As gradual as the patient can tolerate I recommend. So I never decide. The patient made a decision day by day.

One can tolerate what he made his own decision to do. That was my manner.

He chose to withdraw first from CsA and then from topical steroids intermittently.

The photo above is his appearance four months after the initiation of withdrawal. He developed erythroderma. It is the rebound phenomenon due to TSA (Or red burning skin syndrome). It never is his original eczema.

Sometimes dermatologists comment that topical steroids should not be quit abruptly because it can cause the rebound phenomenon. But in case of TSA with atopic dermatitis, I don’t agree with that opinion because tapering doesn’t work in most cases to avoid rebound phenomenon. The patient in this case also couldn’t avoid rebound though he tapered. He could never escape from TSA if he obeyed the theory that there should not be any rebound if appropriately tapered.

In case of steroids therapy for other disease, for example collagen disease such as SLE, tapering manner is very useful and impotant. But in case of atopic dermatitis, it doesn’t  necessarily work.

As for the patient, he must have visited the former collage hospital because he had felt topical steroids became ineffective. His former dermatologist prescribed oral steroids at first. The dermatologist must have considered the patient’s eczema would subside soon and oral steroids could be stopped. But the patient couldn’t stop oral steroids. Then the dermatologist in charge prescribed CsA probably for replacing with oral steroids. But it failed again. That is the situation of the patient when he visited to me, I suppose.

The patient had already dropped to TSA before he was prescribed systemic steroids. If the patient was informed of TSA and strongly advised to decrease to stop topical steroids during systemic steroids or CsA therapy, the patients might have already overcome TSA.

His appearance improved a little after 2 more months. His rapid ACTH test showed 2.6 microgram per deciliter before injection of 0.25mg ACTH and 15.0 after 15 minutes. His adrenal function has recovered.
So he must start withdrawal from oral steroids as the next step.

The above photo is one year after withdrawal. He could stop oral steroids completely.

4 more months after. His eczema worsened than before. But he never used any medication at all at that time. So he is improving even if his appearance is worse.

Two years after withdrawal.

Two years and a half has passed.

Three years and a half after withdrawal and two years and a half after complete cessation of oral steroids. He has never used any medication for these two years and a half.

I used to repeatedly present those case reports in dermatological congresses to inform dermatologists of the reality of TSA/TSW for the purpose of appealing that such addicted patients are just like bad debts and we dermatologists should pay for them with all our efforts. But there were few reactions.

On the other hand, patients with TSA visited to me one after another. The more I see, the more I must see.
The situations in dermatology never changed. Only my work became hard.

I couldn’t even maintain my own family life. I was not a good husband or a good father. Ironically enough, none of my family suffered from eczema. It was out of my family's businness.

Why am I working for other people? Should I sacrifice my personal life only because I am a medical doctor?

If I were a person of religion, I could devote myself to God and feel relief by it. But I wasn't.

I got even insensitive to patients’ gratitude. Patients' gratitude sounded nonsense to me and made me sad. I felt sadness by the fact that I couldn’t feel any happiness by patients’ gratitude.

But now I am almost healed. Time eased and healed me gradually just like withdrawal from TSA.

I am now a cosmetic surgeon in a small clinic. And my small clinic is like a religious house for me. I have been working routinely every day to cure my broken mind.

I feel happiness again when a patient becomes cured. So I am writing this blog.
I am happy now because I can feel happiness.
Well, so much for today. That was a case of withdrawal from TS, oral steroids and CsA and a case of withdrawal from depression (me).

Sorry, the comment column is not available now. But the author believes readers can find some hints to overcome their own situations by the previous comments.

45 件のコメント:

  1. I am so grateful to you for your work and research. I know you have suffered too, maybe not physically, but mentally.

    I live in the UK and stopped steroid creams 18 months ago. I am almost healed now.

    Thank you for your pioneering work. Without your research and Dr Rapaports research. Would still be addicted to steroid cream.

  2. I thank you too for your gratitude.
    I can feel happiness now to hear of your healing.
    I had long forgotten that it is simply happy.

  3. I am now into month 37 of topical steroid withdrawal and about 90 per cent recovered. :) I appreciate your work and time offered here as well.

    I am having a lot of bone pain and aches in joints and overall bones. I did test positive for osteoporosis about 8 years ago. I notice many tsw members in our support group also complain of bone pain, even the children. Is this something you have encountered with patients and can you elaborate on it if so? Thank you. xx

  4. I have not experienced such a case with bone or joint pain. It is not common.
    There are some cases with painful skin rather than icthy skin. Sorry for not being helpful.

  5. Hello doctor ..i m 22yrs old girl ..i used steroid betamethasone 0.05%cream for 22months on my face..nt daily but ya thrice a week or like dat..now i m on 2nd month of withdrawal...i get red bumps on my face they remain for 3 to 4 days n go away...how long will it tk to completely heal up??

    1. It is difficult to answer. Sorry.
      What I can say is that there is an exit in topical steroids addiction. Please read other articles of my blog.

  6. What is systemic steroids ? I have been using topical steroid for the last 10 years. Applied steroid almost everyday. Elomet, betasone, dermovate n clobetasol. For oral steroid, i took penisolene for 1 week every 6 month. There is no improvement at all n is getting worse so i decided to stop topical steroid after i know TSW from itsan.org.
    Now my skin is so bad that im always in bed. Shivering s extreme cold. Oozing, pain n extreme itch. I shred alot of skin too. The pain is unbearable n i feel like dying. Im thinking should i take steroid injection n slowly reduce topical steroid ? I wish to be cured in a less painful way.

    1. Systemic steroids mean oral tablets or injective medication. Withdrawal from topical steroids is just like clearing the debts. There is no way without damage. Please visit ITSAN’s forum. You can find there are so many sufferers like you in the world. Communication with them will comfort you a little. No serious side effect exists in communication.

    2. I am in hospital and they just checked my adrenal level and results came out normal. However I am still having serious rebound after stopping topical steriods for 4 months. Now I have to be on oral steriods temporary as I am feeling extreme coldness and pain. Doctor here suggest CsA after my inflammation subsides. Is this a good way to quit topical and oral steriods completely?

      Why do I have a big rebound after stopping topical steriods if my adrenal level is normal?

    3. Please show my post here to your attending doctor.
      Temporary use of systemic steroids or cyclosporine is not always harmful but can help your withdrawal if they are used really temporarily.
      Secure a promise from your doctor that the medication is surely to be quitted in several weeks or months at least.

    4. For ur patient above after his adrenal function has recovered, he stop medication during withdrawal. What did u do to help him cope with the withdrawal when worsen ? without medication?

    5. Only words. Just like I am now doing. You are not the only or the first sufferer. There is an exit.

    6. Now I hav to apply QV cream for every 2 hours. Nurse said it helps to reduce dryness n itches. This is the 1st time that I applied alot on whole body. Based on ur experience, does moisturiser helps to prevent flake up ?

      I lost 10kg n I cant sleep at night. Only sleep in the day. Is this normal ?

    7. Don’t be afraid. It is normal.
      About moisturizer, please refer to other posts of my blog.

    8. Thks alot doc. U hav given me an alternative to cold turkey. My adrenal gland is in normal range but is at the low side. I still feel cold, burning sensation n itchy. Usually oral steriod wil take how long to tak effect ? Last time just 1 day of oral steriod, my skin wil b normal.

  7. Dear doc, now my doctor suggest to incoporate oral steroids and taper it down up to a maximum of 1 month. During the tapering down of oral steroids, use UVB light therapy to treat my withdrawal. Since UVB rays will only take 2 months to see effect so wil use this 2 treatment concurrently. I wish to ask whether u hav patient using this method to cope with rebound ? If have, is it effective in relieving pain during rebound ?

  8. With respect Dr. how does one raise their adrenals and cortisol levels naturally while going through TSW?
    Also, do you think more physicians will ever be on board with this idea? I wonder why a deaf ear is turned.

    1. First of all, I must point a misunderstanding out. TSA and adrenal suppression are different things. Adrenal function ( blood cortisol) of most patients with TSA is normal or even accelerated.
      Apart from it, the skin itself produces cortisol. It is a new knowledge and has recently revealed. TSA can be caused by dysfunction (suppression) of cortisol synthesis in the skin itself though it is still a hypothesis.
      From above knowledge, patients with TSA don’t need to try to recover their adrenal gland but wait until the recovery of natural production or regulation of cortisol in the skin. There are many alternatives to cope with rebound or skin after TSW and I think most of all contribute to the recovery of production or regulation of cortisol in the skin itself.
      I think the activity of TSA sufferers like ITSAN is very important. Dermatologists will not be able to ignore the problem.

    2. Hello Dr. Fukaya,

      Thank you SO MUCH for all the research you have done on this.

      I couldn't find much about my question below but also wonder if I was searching wrong.

      In short -
      I have used mild to strong cortisone super sparingly since kid, one dab over vaseline for max two days in a row. Face, inner elbows, neck.

      I never had red and bad flares between usages. And I wouldn't use for months or even Years at times.

      I would get red patches in face the last 3 years, that's when I would get a prednisone shot 40mg. Once to twice a year. But no flares in between and max one tube of cortisone used in one to two years.
      But December 2013 I got oral steroids for a debilitating sinus infection. Then I got real red in my face in January, got a shot, and it took three days to work, which made me wonder.
      I had itchy patch March put dab of mild cortisone once but then stopped everything and in April all hell broke lose. I had red face, swelling, herpeticum, shivers, insomnia. I thought it was detox I was doing, my derm said it was the herpeticum.
      Turns out it's TSW.

      The Question is - did I JUST got addicted recently? Because all the previous Years there was no worsening. Just flares with seasons. How do I count my usage, addiction, you know..

      Please help. I know that TSW is so unpredictable but I want to understand it at least a little.

      thank you so much

    3. Sorry, it is difficult to understand your situation from your posting. There are both possibilities that you are addicted and not addicted.

  9. Dear Dr. Fukaya,

    I understand that we can't completely avoid the rebound phenomenon by tapering down topical steroids, but could a less severe rebound flare be achieved by tapering when compared to quitting topical steroids cold turkey?

    Thank you for all of your work.

    1. I believe if you can taper the strength or amount of TCS, you can quit it cold turkey also at the same or less damage. But try it as you prefer. There is no golden rule about it. There are as many ways as the number of patients.

  10. Dr. Fukaya, thanks again for helping so many who come here to seek your advice. :) Could you explain why it is okay to physically stop TS cold turkey? Is it safe for parents to stop TS on children cold turkey? Thanks...

    1. It is not a problem if a patient or parents choose cold turkey. Medical safety depends on cares of nutrition, infection control and prevention of dehydration.

  11. Another question for you Dr. Fukaya, what is the time frame you allowed your patients to taper off topical steroids? Would you advise it for one year? Do you think a doctor using topical steroids on children who are addicted and let them taper for one year with daily use is allowing the body to taper off them?

    1. It depends on patients. What is obvious is that TSW needs strong will of patients themselves. Not of doctors.

  12. Thank you Dr. Fukaya, there is a doctor Aaron who puts all children on TS whether original eczema or in withdrawal and says he can taper them off the drug but I've not seen proof of this and concerned for many sufferers.

    I have a granddaughter of age 19 who is 38 months into withdrawal from topical steroids, tired of the flares still happening off and on and considering going back on topical steroid with a dab here and there, thinking it will clear her skin. I am not supportive and asked her to consider cyclosporine rather than go back on steroids. What would you advise if your patient as she is throwing in the towel since her skin seems stuck for a long time in flaring, never full body clearing and with the hot red skin of withdrawals at times? She has recently tested very high in eosinophil levels, very low D3 and hypo thyroid.

    1. I can’t say anything to a peculiar patient without seeing the skin. But generally speaking, I will prescribe TCS as much as the patient requests under the warning that TCS can cause addiction. It is because there are so many variants about tactics fighting against AD or TSA/W. It is just like a human life. Nobody can disturb the way because all the agony is of the patient oneself.
      Dr. Rapaport or Dr.Sato in Japan will not agree with me and encourage the patient to continue to withdraw. People may think they are stricter than me but I know I am stricter in fact. Some may think my attitude is cold but it is my policy. I give all information but decision must be done by patient him- or herself.

  13. Sir,
    The above patient you presented. Had he stopped TS and just continued cyclosporine his recovery time would not change correct? His duration in recovery was longer due to adrenal suppression. However, The
    cyclosporine is to help cope with symptoms I am understanding? Another question since all individuals are unique if one discovers TSA relatively quick like 3 months does that impact rebound or recovery. This above patient fell into TSA even before oral steroids had he gone to you sooner would recovery be quicker than three years?

    1. This is a complicated case. I don’t know how his clinical coarse was if he first quit oral steroids and then cyclosporine. But it takes long time until improvement of suppressed adrenal function due to oral steroids. Cyclosporine was a new drug in 1990s and we couldn’t predict the result after such a long time use. That is why we quit cyclosporine first.
      The second question: maybe yes.

  14. Sir,
    Thank you for the reply. 1. I am reading about patients using azathioprine and cyclosporine to help with rebound. I also read a study on
    both having equal efficacy on severe atopic
    pts. Of course since you are not practicing
    your experience with this might be less.
    2. I read also in your blog regarding the
    serous exudate. Does that signify any stage in
    the rebound or just a finding?
    3. I want to thank you for giving us information. The sensitivity that you are discussing do they dissappear after amplification during the healing stage or will they be there always?

    1. 1 You are right. I have few experience of immunosuppressant to TSA/W. But I am worried if dermatologists who have little recognition of TSA/W can successfully use this kind of medication. The above case is such an example.
      2 No. Patients with no addiction develop exudative eruption also.
      3 Sensitive skin disappears as time passes.

  15. Sir- how does your approach differ from drs Rappaport and Sato? I am not understanding your above reply.

    1. Drs Rapaport and Sato will decide for patients while I never decide by myself. The difference lies in the policy and not in the concrete method.
      The patients become free from the stress of decision by Drs’ method while my way force the patients consider by themselves. There are various patients. Some like Drs’ way and the others like my style. Maybe you like my style because you are asking to me and considering by yourself.

  16. Sir-
    Thank you for your valuable time. I wish more physicians would recognize this. It's basic principle is not so hard to understand. I hope your recenr article will make the needed impact to push for change for tsa/w pts.

  17. Dear Dr. Fukaya,

    Thank you for the work you've done with TSA/TSW, and for sharing it here.

    I'm at the end of my second month of TSW, and it has been a very difficult time, to say the least. My symptoms are bad enough to the point now where I'm not sure I can continue my job or take care of my family. My wife is 8 months pregnant with our first child, and I feel helpless. I need to get better, but I'm not willing to use topical steroids again.

    I am wondering if it would be possible to control my TSW symptoms with oral steroids. I know that oral and topical steroids work differently. My question is...do you believe that my skin will continue the TSW process and recover even if I begin to take oral steroids? I am considering starting oral steroids and slowly tapering the dose over 1-2 years, and would really appreciate any thoughts you have on this.

    Thanks you so much for your time.

    1. Yes. If I were you, I would choose the same way.

    2. Thank you for your response. I will see my dermatologist here tomorrow. Hopefully, in time, I will be able to share my own success story with you.

    3. Good luck. I am sure you are enough strong and smart to overcome the present hard situations. Be careful of the eye problems and be proud of yourself. I feel you are a good husband and a father.

  18. Hello Dr Fukaya thank you for writing this blog and helping people with TSW. I would like your advice if possible. I am a 30 year old lady due to get married in July. I have used elocon for most of my life since childhood for eczema, body only, not on face and my skin appeared normal. My 'eczema' mostly affected hands and feet but spread to arms, back, legs and stomach over last few years. My skin has atrophy and striae as I started trying to use less TS I started breaking out in the itchy burning rashes. I tapered down to eumovate and protopic twice weekly. Over the last 8 months my skin has worsened dramatically. I am seeing a dermatologist who doesn't support TSW and has diagnosed me with ' extensive eczema'. I want to start cold turkey TSW after my wedding but I think my skin has other ideas. The main problem is I have now only got 4 .5 months left to the wedding and getting very stressed and worried as I hoped to be comfortable and look human for the big day. My dermatologist gave me 1 week oral prednisolone 30 mg to see if it would help it did for the week and rashes disappeared but on the last day I had a red face, it was like the effectiveness got less every day. The rebound was painful and burning the following week. I didn’t use any creams TS or protopic that week. The hospital advised light therapy but I now have a swollen red face and red itchy body and full red sleeve. Oozing started from ears, armpits and back of head and feet. The other option they gave me was to be admitted and wrapped in emollients and potent TS for 5 days. I said ‘no ‘to that option. The next option was methotrexate. I am feeling at this point that in some ways it sadly may be better to cancel the wedding, get on with TSW and have the wedding when I am healed. It would really help with my decisions if you could please answer I few questions.
    1. Which is the best immunosuppressant for TSA in your experience and how long does it take for them to start working?
    2. If they reduced my symptoms a bit could oral steroids or injection be used on top of this to give relief?
    3. What would likely happen if I went back to elocon for a few days prior to the wedding, would it still work as it used to? Is this worse than oral or injection steroid for relief?
    4. If I did go back to elocon will this erase any benefit of tapering for the last 8 months?
    5. Is there anything else you think may help?
    6. For the withdrawal could I then stop TS and stay on immunosuppressant to help with the symptoms as I know I am in for a long difficult journey.

    1. Triamcinolon acetonide 40mg injection (intramuscular) was best in my experience. Oral steroids sometimes cause psychological dependence because patients can easily take them. It is difficult for patients to inject steroids by themselves.
      Maybe Elocon will not work as before because the rebound is active and strong now.
      I recommend you take Triamcinolon acetonide 40mg injection once anyway now. You could know how effective it is in your case and how long the effect continues. If it were effective, you could utilize it before the wedding. I called the method as ‘wedding steroid’ .

  19. ruriko hoffman2015年3月15日 5:57

    Hi, Dr.Fukaya
    I am 75 yaers old. Last year first time in my life I was told I have Eczema by the dermatologist. I am on 9months withTSW. I have the pain on my wrist of right hand. It is called (Ulnocarpul Abutment with Triangular Fibrocartilage Tear ) and since my stomach can not take the pain medication I am thinking to get corticosteroid injection for the pain and the inflammation. Dr. Fukaya do you think is it safe to get the injection and does not affect my TSW?
    I am doing well on my TSW so far---I can say 80% progressing--- and I do not want to going back ward.
    I appreciate your thought.

    1. Systemic (not topical to the skin) steroids don’t affect TSW so much. For example, Patients with asthma can’t stop inhaler but can withdraw from topical steroids safely. Don't be so anxious about it.

  20. Dear Dr Fukuya,

    you are my hero.

    I am a big admirer of your work and would award it with a nobel prize if I could.
    You are a good, good human being and a briliant mind; very hard to find these days.

    Thank you very much!

    1. Thank you. But the real hero or heroine is the patient who has successfully withdrawn from TSA. This thinking is not from my modesty or humbleness. I really think so.


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