2013年6月12日水曜日

How long does the rebound period continue? Am I really suffering from TSA now?

Sometimes I am asked how long the rebound period usually continues. I am reluctant to answer to it because it differs by patient. Nevertheless patients expect any answer from me and ask again and again. So I used to answer that it is about 20 percent of the period in which you applied topical steroids.

It is my honest impression on average. But average is only average and doesn't always go for the individual patient. So I should rather refrain from answering.

When I explain TSA/TSW, I tend to refer to the cases easy to be understood. So the “typical” cases are presented. Such cases develop severe rebound for several months and then improve almost completely afterwards. But it is not a “typical” case in fact but an “understandable” case.

So I present here another case. She had used topical steroids since infancy until 23 years old. I could obtain her medical record by the help of her former dermatologist in charge.

 
The photos after the first visit to me are as follows. She had never used any steroids afterwards.



The photo of 96.10.8 is the absolutely addicted skin manifestation. Most dermatologists will diagnose it as atopic dermatitis with prurigo and comment “Prurigo type is usually hard to be treated”. I dare to say it is not correct. Atopic dermatitis with prurigo is often topical steroid addiction. That is why such a type is hard to be treated. In such cases topical steroids don’t work anymore.

Photos from 96.10.24 to 97.1.14 are series of the typical rebound aggravation. The rebound became the maximum in 97.1.14. It is Rapaport’s “Red burning skin syndrome”. From 97.3.25 her eruption began to subside. Though there were ups and downs, her skin manifestation began to change from the addicted one to the orthodox atopic dermatitis.

You can see an obvious demarcation around the wrists on the photo of 97.1.14. It is one character of rebound phenomenon.

There is a Youtube movie in which a patient talks about this demarcation. Please find it on the following website. http://www.youtube.com/watch?v=EX5qs9Viblg

Do you remember ITSAN’s symbol logo? I admire the illustrator. It is very suitable as a logo of TSA association.
 
You will not identify the demarcation on the photo of 99.8.10. Instead you can see eczema on flexor sides of elbows. It is an orthodox appearance of atopic dermatitis. There is few or less prurigo than in the photo of the initial visit. She had almost cleared the rebound.

But still she had eczema. She withdrew from TSA and came back to her original atopic dermatitis. Can you judge from what point in time her eruption has changed?

After withdrawal from steroids, the skin becomes very sensitive to every stimulus for a while. The patient’s skin can’t tolerate to even simple white petrolatum. The skin reacts to various stimuli at that period and the eruption is completely similar to original atopic eczema. Yes, it is the eruption of atopic dermatitis. But from the viewpoint of making much account of TSA, in a wider meaning, the patient could be regarded as staying still on the way of withdrawal.

From a certain point of time the patient's eczema becomes completely of the original one with no relation to former steroids application. But the point can't be correctly judged.

However, remember that original atopic dermatitis itself has a tendency to be healed naturally. Hypersensitivity after withdrawal also decreases as time passes. It is not important to judge the point of time dividing the two. Anyway the patient is on the way to improve.

Patients become very tired and depressed as time passes. My “understandable” case presentation is surely a hope for them at first but becomes a stress after much time has passed. And they ask the titled questions of me. “How long does the rebound period continue? Am I really suffering from TSA now? “

During early times of withdrawal it is surely hard to tolerate but what you should do is only tolerating it. But after enough time has passed and your eczema has changed to usual atopic dermatitis, you should do other efforts. Detecting and avoiding any stimuli to your skin. It is easy to say but difficult to carry out. But it surely is the wisest policy.

At that time you can even resume topical steroids which you must have thought you would never use again in your life. You might feel a humiliation but they would really work. For the better quality of life you can utilize them. What you are requested is only the care not to be addicted again.

Some patients prefer small tablets of oral steroids. Even though they are not informed of TSA/TSW, they fear topical steroids instinctively and empirically. But it is not a good choice because such patients are prone to be addicted to oral steroids psychologically. Needless to say, oral steroids are more harmful for your general health than topical steroids when they are taken for a long time. .

The female patient of my above presentation never used any steroids while I was her doctor in charge. I never told not to use them. I always only inform the possible ways. She herself decided. 
 
After my retirement I don’t know what way she would choose. I don’t care what way she went on but I really hope she is doing well now from the bottom of my heart because she was once a patient of mine.
 
 
Before withdrawal (during application of TS) all blood markers are suppressed and don’t reflect the real significance of eczema. They indicate only the amount of TS to make a sarcastic remark.

After withdrawal from TS, these markers increase rapidly and then decrease gradually reflecting the real skin conditions. If the patient is exposed to some aggravating stimulus, the values increase temporary.

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.
 

35 件のコメント:

  1. Thank you for sharing this. I had eczema as a child and used topicals for 40+ cumulative years. I am now 33 months post topical steroids and have had one area that has not healed on my upper legs. Not sure if it's tsa or dermatitis, but had a pretty bad flare about two weeks ago after drinking molasses tea twice a day. Do you think food/drink can cause a flare up since it maybe my original eczema and I had previous allergies? I will never touch steroids again, too much trauma with this possibly recurring.

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  2. There is a possibility of food allergy. But I should avoid any judge for an individual patient here because I am afraid of misdiagnosis so much. It would be a tragedy if I was wrong and you mistook the way.

    There are three simple rules for detecting food allergy.
    1. Stop the food which you feel makes your eczema worsen after taking it.
    2. Stop what you favor and you are taking every day for two weeks or one month. Then try to take it a bit. If your eczema becomes worse, it is so-called trapped allergen.
    3. Try to take the food in two years again. Food allergy is not necessarily eternal. You may take it without worsening eczema again.

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  3. Thank you. I stopped the tea a week ago after suspecting it as chocolate gives me the same reaction and my eyes also get very red, itchy and swollen. It took about two weeks for it to calm down in the past with triggers like this so I hope it will settle.

    I'm not sure this would be easy to detect early on in tsw as flares come so easily, but in my case I am farther along have been quite calm for six months now on most of my body except the upper legs which flared harder than normal both times I drank the molasses tea.

    Many members in the ITSAN forums are following your blog and it is a beacon on the night for all of us, thank you once again. :)

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  4. This is more a supplementation to my article than a response to the above comment.
    Rebound just after withdrawal is like a storm. Patients try their utmost best only for staying alive. After such period for one to several months, rebound becomes to subside though still there are ups and downs. At first severe exudation is usually accompanied by and your bed sheets become a murder scene every day. After the exudative period, dry scaling period follows it. Scales weight more than 10 grams per day. At that period you should take anything you can eat because nutrition is very important. It is like a supply to a battlefield. Any solder can’t battle without good supply. The hypersensitive period follows the dry scaly period. You will react to various stimuli at that time including food (food is taken through intestines but it reaches the skin after absorption). But this is a chance to detect what you should avoid because the response is amplified. You should think it is a lucky time rather than worrying about it. Thinking positive, laughing by watching comical TV and chattering with other patients through intent are useful for maintaining your heart healthy.
    Many patients develop seasonal aggravations. I don’t know why but it seems to occur in the same season the patient withdrew from TS. Maybe patients tend to launch TSW in the originally aggravating season. The seasonal aggravation decreases in severity year by year according to the recovery from hypersensitivity.
    Patients began to sweat extraordinary at the recovery period. It is just like bed-wetting of small children. It may because sweat glands are recovering. Some patients develop hives at that time also though the reason is unclear.
    The skin lesion of the rebound appears over the area where you formerly applied TS. The reason or mechanism is also unclear but it is very common.
    Usually a limited area of dermatitis worsens and spreads widely after TSW. It starts most often from the face to the neck, trunk, extremities and stops on the dorsal sides of hands or feet. A characteristic demarcation which I mentioned in the text can be observed. In the more severe cases rebound reaches palmer sides but they are just patchy. It is not a very rare case that only one finger eczema long treated by TS develops rebound, spreads to the arm, trunk and the whole dody.
    Patients may develop patchy granulomatous lesion also. It remains for a long time after other parts become almost improved. But it disappears after a while because it is also the characteristic manifestation of the rebound. You can see the photo of one on the back shoulder of a patient in the following page. http://www.xtosis.com/chapter11.htm

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  5. Very interesting as I had flares in September when I was 13 and 23 and stopped ts in September 2010. I used less ts during summer months due to swimming and sun and only used on my hands but flares came on my face both times and the third time when I understood it was ts, it started small around my eyes and then my chest/stomach with red spots everywhere which cleared then spreading to hands, arms and most other areas. My worst area now is upper legs as I used a lot of steroid hemorrhoid cream throughout the years after birthing babies. I never thought about the absorption of that..rough one for sure.

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  6. Hi, I had facial eczema for about 2.5 years and have completely stopped using steroids for about 3 weeks. My cheeks and eyelids are red and dry but the rest of my body is clear. Does the red sleeve thing appear in all patients? I'm not sure if I'm experiencing tsw or not.

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  7. No. My above description doesn’t meet all patients. There are of coarse localized or somewhat milder cases also. The red sleeve is not absolutely necessary for the diagnosis of TSA/W.
    I can’t judge if you are really suffering from TSA/W. But your above description shows there is an enough possibility.

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  8. Hello Dr. Fukaya,
    I have had atopic dermatitis my whole life. The first time it got really bad was when I was 13 years old. I was allergic to my cat. After that my skin healed and it only got a little bad every winter. When I was 18 years old I started using protopic. I used this for 2 years. And I never had any bad eczema on my body. I only had it on my face, neck and a little on my arms. After using 2 years of protopic I started using topical steroids again. It was of class 2. Two months after I stopped using protopic, my eczema got really bad and started spreading over my whole body. I was 21 then. I didn't had eczema on my body for 8 years. I tried the topical steroids but they didn't work. The protopic itched to much so I didn't use that either. After 6 months of bad eczema I visited an other dermatologist. He gave me Elocon. A class 3 topical steroid. My skin got really better and I kept using this for 5 years. The last year my skin kept getting worse. And I also got rosacea like rash on my face. So I started using protopic on my face and topical steroids on my body. I used the topical steroid every 5 or 7 days. Now because it is winter I do not know if my eczema is worse because of the weather or if I am in withdrawal. I stopped using topical steroids and protopic for 2 weeks now. The first week my face really burned. It felt like a sunburn and my face started peeling every day. But also I have only used 20 grams of topical steroids last year. But I did use it every 5 days or so. So now i don't know if i am in withdrawal or if my eczema is getting worse. My dermatologist said that it is just eczema. But I am really worried. I don't know wether to use topical steroids now or not. I am really doubting everything. I don't know what to do now. I do have all the symptoms described for topical steroid withdrawal but they do not look as severe as in other people. Or should i wait 1 month to see the symptoms then. So is it possible that i have a mild form of withdrawal or that i am in the beginning phase of addiction or that my eczema is getting worse?

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    1. I also can’t judge if you are really addicted or you are simply through seasonal worsening. What I can say to you here is that you should see an ophthalmologist and it is possible that you are addicted.
      Don’t worry. There are many possibilities but no crucial ways. You can use topical steroids while you can refrain from them. As far as you know the existence of addiction, I believe you will not overuse steroids.
      Choose your own way by yourself. Never be depressed or pessimistic. You wrote you can’t believe anything. Yes, you should not believe anything except yourself, that is, your strength.

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  9. Thank you very much for your advice. I will try to find my own way in this situation and I will also try te be more possitive. I also want to thank you for your great research work and your articles on this blog.

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  10. Hi, i hav been using steriod oral n application for 10 yrs. i am goin thru TSW n nw is the 4th month. Everyday is hell n I lie in bed everyday. I am taking traditional chinese herbs n it only slightly improve the appearance of my skin . I cant stand the cold. Is like winter everyday. The pain in my mouth n neck is so painful that i feel like dying. My skin is very severe that few tcm physician suggest that i take steriod injection n tcm herbs together. Should i take steriod temporary to improve my condition then i use tcm ? Or i just go thru TSW without steriod ? I am v confused nw. If i take steriod to relieve pain temporary n then take tcm, wil i suffer more later ? I just want to find a cure to this nightmare. At the same time, i want to suffer the least amount of pain. I can sent u pictures if u wan to see.

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  11. Hi Doc,

    Just to give you more information, I am experiencing oozing, pain, itchiness, and the constant terrible cold. So much thick.dead skin keeps growing around my mouth and neck area and i have trouble eating and turning my head. Together with the bleeding, i feel like giving up and returning to steroids and taper it off together with the help of traditional chinese medicine (tcm). As many tcm told me to go back to steroids first.

    I have idea what should i do. I would like to have your advise whether to taper off with steroids and tcm or continue go through tsw with hell

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  12. Hello Doctor, I am 2 months intro withdrawal. Like other TSW patients I have oozing skin, itchiness and muscle/joints pain. But the thing that freaked me out right now is the formation of pus (the cloudy yellowish-white coloured fluid) on my face mostly and on my hands and arms. Is it some kind of infection? Or is it part of TSW process? At times I wonder whether I am having red skin syndrome myself. I really need your help in this doctor.

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    1. There are two possibilities. 1Pustules formation can occur in the course of TSW. 2Superficial infection adding to (aside from) TSW. I can’t discriminate from your writing only. The latter occurs very rapidly and often asymmetric. I recommend you try disinfectant therapy (Please find the article from the right side labels).

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  13. Hi Dr Fukaya,

    If someone were to recover from initial TSW flare (about 7 months after withdrawal) but still a little bit red and itchy and then 4-5 months later flare again unexpectedly, but not as bad as the initial flare, would you say this is normal behavior of TSW?

    Or would you say that it has been accidental reapplication of steroids without the person knowing it (accidently touching steroid from other people eg, shaking hands)?

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    1. It is very normal. It is often the case with patients.
      Please refer to the latter half of the movie I uploaded. Don’t be too much depressed. Be smart.
      https://www.youtube.com/watch?v=mJ0IKTSse2E

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    2. Oh, thanks for the video!

      Would that patient have eventually healed regardless if he had not move houses? What was aggravating his skin that was in his old house?

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  14. Hello Dr. Fukaya.
    Thank you for very good article.
    Its very sad that you dont work with TSW patients, if i do right understood from your blog. The reason im writing this,i wanted to visit dermatologist who is understands whats happening and very familiar with TSW, and could examine skin condition for skin atrophy. I know that there is also Dr. Kenji Sato in Japan. Do you think its possible to visit Dr. Sato or maybe to visit you from another country? I feel that i really need to see a doctor who really understands whats going on,

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    1. I think it is possible for you to see Dr. Sato. I know direct communication can ease patients very much. But I am afraid if it is really worth spending money and time for overseas patients by travelling to Japan. It is because Dr. Sato (and me also) is not so familiar with seeing patients in English.
      Doctors don’t cure but time cures the illness in TSA/TSW. If you have any question, I will answer as much as possible here in the comment column.
      The URL of Dr. Sato’s hospital is as the following and you can find e-mail address in it.
      http://www.hannan-chuo-hsp.or.jp/other/toiawase.html

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    2. Thank you very much Dr. Fukaya for your answer!
      I understand the possible difficulty with the language. But what if i could find a tranlsator?
      I know that doctors cant cure TSW. But i feel very upset and depressed about my skin on the face. I would be more than happy if doctors could say that its just TSW and it will cure. Im not sure if my skin on the face still going through withdrawal.
      I had atopic dermatits since 3 y.o. Used TS on elbows and behind the kness since 5 y.o. for maybe 1 year. It came back when i was 15. From 18 to 19 y.o. i used TS on the body except my face.
      I used TS on my face from december 2006, i was 22 y.o. (advantan), but applied it not very often, since january 2008 i noticed that i must apply TS every 2 day (once in 2 days in the evening). I didnt know about addiction and was still using advantan ointment till september 2010. Dermatologist prescribed me Clovate 0,5 (clobetosol propionate) and i used till march 2011, thats when i first tried to be off TS. In the april of 2011 another doctor told me that im not will be cured and prescribed me dermovate. I used it eveyday till may 21st 2011, then i decided to quit TS. But i didnt know about cold turkey, and was using on body except my face.I started cold turkey in june 2012. I had a mild red skin syndrome symptoms on my hans,legs, and belly area including chest, without red sleeves, but terrible withdrawal syptoms on the neck.
      Now i have angry and red skin on my face from one cheekbone to another,including cheeks and sometimes forehead and jaw line. Sometimes with oozing. It looks very strange, the skin is very thin and sore, sensitive and looks terrible still. Oh and my neck is flaring too, but not so bad as it was. It would be priceless to me if doctors could just tell me that im still in withdrawal and it will go, because im not sure whats happening to my face, i dont even recognize myself and i haven any breaks on my face skin since i started withdrawal. Maybe my vessels are destroyed forever or maybe i got some kind of atrophy,i dont know. But im tired and sad of this unknowing situation.

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    3. Can you upload your photos? In am not certain if it is possible but I will try to diagnose.

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    4. Thank you Doctor for reply! I was trying to upload some picture here, but it seems that i cant do it in the comments form. I was thinking of how can i upload some photos. Oh my god, it will so just great if you could only give me your opinions about the skin condition. Please, can i send you an email, or to your assistant? If it is possible please send me an empty message on aiya5cat@gmail.com. And if its not possible i will try to think another way of posting photos.

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    5. Please refer to my answer to the comment of Renaud Perrier under the following article.
      http://mototsugufukaya.blogspot.jp/2014/07/topical-steroids-cause-two-kinds-of.html

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    6. Thank you Doctor! I really appreciate your help and patience!

      Ive just apploaded some pictures.

      http://s8.postimg.org/c5ziksead/Oct2014.jpg

      http://s29.postimg.org/7ys44r0fb/Ocotber_2013_1.jpg

      http://s3.postimg.org/gqx4st04z/Oct27.jpg

      http://s3.postimg.org/4nrt58p2r/May2014.jpg

      http://s3.postimg.org/rnyghkmwj/2590_1.jpg

      The worst picture with the neck is november 2013.
      It would be just great to know your opinion.

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    7. You are recovering from TSA. I can judge that by comparing two photos of Oct 2013 and 2014. The present diagnosis of your cheeks is rosacea-like dermatitis.
      It is worthy that you took pictures of the worst time. Sometimes patients dislike recording them. Is there a tendency of seasonal aggravation in your case? It is important to compare photos of the same month for several years especially in the aggravating season.

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    8. Hi Dr Fukaya,
      May I ask what it means if the skin is worsens due to seasonal factor (e.g. skin symptoms get worse in winter)? Does it mean that the skin is still undergoing sensitivity after rebound?

      Thank you

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  15. Thank you for commenting my pictures Dr. Fukaya!
    It was a hard decision to take pictures,but its important i think.I decided to take pictures in 2013, but i wish i did it earlier!
    Yes, think i noticed that i usually had hard flares in november and april-may.
    Can i ask you one more question please,do you think is there any hope or chance that skin on my face will be cured by itself? Is this rosacea-like dermatitis can be cured?

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    1. Of course there is enough hope or chance of curing by itself in your case. What is needed now is mental support not to be too pessimistic and it is provided by me here.

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    2. Thank you Dr. Fukaya! I will try not to be so pessimistic.
      Must say that you have a really big heart and you really love people! This is rare now!

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  16. Dr. Fukaya,
    What do you recommend patients to do st home for comfort? Baths, sleep aids, pain medication, food? Is there a rule about oozing or plucking flakes? Is there something we should not do? Also the burning sensation do you agree with Dr. Rapaport that it is nitric oxide?

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    1. Please take participate in the ITSAN forum and make friends. Talking with patients at the same situation will ease you the most.

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  17. Dr. Fukaya,

    I know someone who is trying to keep a full time job and support family while withdrawing from Topical Steroids. This person used one tube of betamethasone over a one and half year time frame and it stopped helping. The realization hit that it was indeed, addiction and now must endure withdrawal. It was rough but more tolerable that now,15 months later into this. He has red, hot flare pretty much full body with oozing from places that didn't flare before and 101 temperature, plus elevated white blood count. He was hospitalized two weeks ago with same symptoms and diagnosed with strep infection. He is on antibiotics and just started cyclosporine but concerned with the low grade fever, lot of skin pain, more oozing and white blood count higher than normal. Have you encountered this a common with TSW and such a hard flare from using one tube of steroid over this short time frame?

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    1. The step infection like that symptom is common. He needs antibiotics but doesn’t need cyclosporine at all. I have treated many such cases without steroids.
      http://mototsugufukaya.blogspot.jp/2013/06/for-parents-of-atopic-children-some-of.html
      http://mototsugufukaya.blogspot.jp/2013/06/words-i-remember-one-patient.html
      By the way, it is doubtful he was really addicted. The amount is too small. There is a possibility that his skin lesion was not of TSA but the original skin disease.

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  18. Thank you but why is his whole body in a red, hot flare with oozing as that is TSW right? He never had it before until the cream stopped working so it makes him wonder very much.

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    1. I can't make a diagnosis without seeing him but TSA is not only disease that causes red, hot flare with oozing in the whole body.

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