Sunday, 2 February 2014

Topical Steroid Withdrawal: My Experience Of Immunosuppressants

So happy! It's only been an entire year since experiencing hair loss from using the medication Methotrexate that I can say my hair is finally growing back in! I do wish I could the same for my eyebrows though. Boo!

Methotrexate is an immunosuppressive drug used to reduce inflammation in those suffering from severe eczema when all other lines of treatment have failed. It has a 50% success rate which I personally didn't experience. It's primary use is as a treatment for cancer patients as it halts and slows down cell division, hence the hair loss. It's a pretty hard core drug.

Similarly Ciclosporin, Azathioprine and Mycophenolate Mofetil are also immunosuppressive drugs that I have been prescribed in the past. Out of all of them I have only had success with Ciclosporin. These drugs are usually used for transplant patients and autoimmune diseases such as rheumatoid arthritis, yet like MTX (Methotrexate), they have anti-inflammatory properties that help with eczema.

The only thing with these miracle drugs is that they are so highly toxic to other parts of your body. The side effects are so numerous and you have to take fortnightly or bi-monthly blood tests, blood pressure tests and urine samples to ensure that your insides are intact and functioning correctly.

Personally I would never take these drugs again for my eczema as I have ended up being far, far worse than where I started. These drugs have properties likened to corticosteroids (steroid creams and oral steroids) where although they suppress the symptoms they don't actually cure the problem. Over time the synthetic nature of these medicines can wreak havoc on your body and make you far more poorly than you were to begin with.

I used various strengths of these immunosuppressants over a long period of more than 3 and a half years and found enough was enough when my body was failing to protect itself from countless infections, both bacterial and viral. I was never well and found myself going to see my dermatologist nearly every day or week at least. I was a complete and utter mess and it's all thanks to these horrible drugs combined with the effects of steroids.

I implore that anyone who has eczema to not over use or misuse steroid cream if it is to be used as you will find yourself rapidly worsening and rising up the ladder of stronger and stronger treatments until your last option is immunosuppressant tablets. I must fully stress that I only got proper eczema in January 2009. It was only 1 year later that I was being freely prescribed these toxic drugs after being plagued with countless other treatments that didn't work. It really isn't worth being a guinea pig. Learn from my mistakes and find the solution to the problem. Find out why your skin is bad and eliminate the cause. Don't just try to hide it by masking the symptoms.

I'm aware that a lot of people are now using the likes of Ciclosporin whilst they battle topical steroid withdrawal. I believe that as long as these drugs are used for their proper purpose for a shorter period of time and it aids relief from the effects of steroid withdrawal then that is entirely your choice. I, on the other hand was told to use these alongside steroid creams and when I quit the steroids and used these on their own I experienced horrible constant infections. I'm pleased to say that since stopping them I have had far, far fewer infections that have required urgent treatment.

What are your thoughts on this matter?

*Disclaimer: I am not steroid phobic, I believe steroids have their place within medicine. I just think that they are abused a lot of the time and used as a first line of treatment when it is not always necessary. Also, this is just my personal experience with immunsuppressants.


  1. My 9 year old son is on azathioprine for the second time in just over a year. His specialist will not allow him to be on it for longer than 6 months though. It works really well for him, the only issue he has is breakouts of herpes simplex. My son had this issue before he was on immunosuppressants though and is now on a low dose of acyclovir to prevent this.

    1. Hi anon, that was my other reason for stopping the immunosuppressants. I've had eczema herpeticum 8 times now in 18 months as the lowered immune system seems to trigger it, likewise with oral steroids... they would instantly make me break out with EH. I am also taking a maintenance dose but am trying to ween off it as I'm fed up of relying on synthethic medication. Is your son going through steroid withdrawal?

  2. I'm about to start Mycophenolate Mofetil today. I've done Cyclosporin before but it didn't help much. I'm really excited about this new drug, even though I know it only works on about 1/4 of patients. My current treatment is wet wraps. They help a lot and provide some relief. But I'm still pretty miserable.

  3. Hi Jenny. I was in cyclosporin for just over a year and plagued with infection after infection. My glands in my groin and armpits would swell to a tremendous size, I was then given oral steroids , normally a seven week reducing course. After the orals were finished with in a week I was getting infections again, a vicious circle!!
    I in the end weened myself off the cyclosporin without telling my dermatologist, that was seven years ago and to this day the dermatologist has never checked up on me, that's the caring NHS for you!!! Glad your on the mend!!!
    Siegfried x

    1. Hi Siegfried! How is your withdrawal going? That doesn't surprise me one bit about the NHS to be honest. I need to go see my GP as some point because there are so many things on my prescription list that I don't even use any more and haven't taken out in over a year in some cases! But you can bet when I do go in I'll be challenged as to why I'm no longer taking them.

      Glad to see you saw sense with the Ciclo :)


  4. always find everything you blog so interesting and honest. I was on tablets several years ago (can't rmember what they were called) but I had to have blood tests every week and urine tests and in the end I decided it wasn't worth the hassle or the side effects- not to mention the risks!

    I hate to say it but I'm a bit of a steroid addict. It's a viscous circle, and I'm on stronger and stronger meds. I recently decided to try and do something about this. I'm allergic to so much so I'm tackling my Eczema from within and have started a blog to chart my dietary progress. I can't imagine ever not using steroids, but I hope one day I'll be Steroid free : )

  5. Hi Jenny, I have been scouring all of the related sites and blogs to do with TSW the last few days as I have been at my wits end with of a lifetime of eczema, allergies and exhausted avenues of trying to contend with it. The last few years has resulted in my falling back on trying to manage an age old problem once again with steroidal meds, topical and oral and has all become so increasingly bad as opposed to better that I did something I thought I would never do which is taking one of these shitty immune suppressant drugs - azathioprine. Yet still going mental with ever worsening skin, allergies, overall health and energy. After my most recent visit with my incredibly unhelpful dermatologist, who once again said 'you have lifelong prob, lots of people have to manage with it, go home and put some stronger cream on your face and everywhere else for a week'.
    I decided that this is going to kill me, or me myself, if something can't be done because all else seems to be failing.
    Anyway I have been recognising on all of these related sites on reading over last few days that there is identical overlaps in what I am experiencing. I stopped all cortisone creams several days ago and of course my skin is going nuts and my face is so swollen, sore and weepy and I am generally awake everynight trying to stop myself from tearing myself apart from top to bottom. But the more I read the more I realise I am going to have to stick it out. Thanks for your story as it is one more that I identify with and helps give me the strength to know that there are others contending with this crappy situation and sticking it out to improve their ultimate quality of life for the years to come.
    You mentioned having taken some immunosuppressant type drugs also, I was wondering if you know whether it is ok to stop taking them cold turkey like the steroidal meds??? I don't think they are helping me, my dose was reduced because it was affecting my blood results (which says enough about how bad they are in itself) but as soon as dose dropped my skin etc more gaga than usual. Anyway the question is can you stop taking immuno-suppressants or does the dose need to be tapered off? Be glad to hear what you say on it, and good luck with it all.
    Thanks, Caroline

    1. Hi Caroline,

      So sorry to hear you're going through this too :( it really isn't pleasant at all. Have you subscribed to the ITSAN forum? There's a lot of helpful people on there who can help to support you through this, similarly there are also groups on Facebook that can help with the hard times.

      I have personally stopped immunosuppressants cold turkey and have been told to in the past by my dermatologist so I can't see it being that much of an issue. I think the thing you have to remember is that they are suppressing the symptoms and reducing redness and swelling that you would otherwise have so when you come off them of course you will experience some inflammation. Have you gone cold turkey from oral steroids? Topical, yes it is generally agreed to come straight off them but oral steroids do need to be tapered. I'd say now that you're off them it's probably best to just start the withdrawal journey even though it is bloody tough. I hope you're ok and is you ever need to talk you can always send me emails.

      Thanks for commenting!

      All the best,

      Jenny xx

    2. Thanks for responding Jenny,
      yes I have gone cold turkey on the topical treatment and haven't had oral cortisone for several months thank goodness. I am still on the immunosuppressant though and might wait until my app. with gp or new dermo to discuss stopping that too (as skin in right mess at moment and getting no sleep for weeks, not sure if I can cope with it being worse on top). Will go armed with info on all that I have discovered via these connections with people like you. The ITSAN site was where I started finding out more info about all of this last week and I will definitely subscribe to forum.
      Thanks again for your response.

    3. Hi Caroline,

      I'm glad I could be of help. Good luck relaying the information to your doctors as if they're not open minded about treatment they can be very harsh about it. As I and others have found out! I hope they are the supportive kind for your sake though. Good luck with it.

  6. “…I can say my hair is finally growing back in!” This is great news, Jenny! You’ve been in a rough journey and you deserve to feel great or better yet, all healed up. Just continue your medications and consultation with your specialists, and for sure everything will work for your best. And also, thanks for sharing about this immunosuppressant tips!


  7. Hello
    I am Carmen CarriĆ³n from Quito Ecuador, my oldest daughter Irene, has struggled all her life with ezcema, and other health issues. I don´t remember a time when she was well enough to enjoy life for more than a couple of months at a time. Two years ago my brother ran into a couple of blogs about people like Irene who have suffered so long and could help with information. She has other issues that have affected her growing up even though we have treated her as normal as the word normal permits, with her other sibblings. We have traveled the world looking for an answer and finally we are at the end of the road once again.....and we have not found a solution,,,since the word cured does not exist for her. We are at the stage in which we are asking genecists to help us find an answer, her inmune system goes wild and starts to eat her up from the inside out, like her doctor described what happens to her. Her ezcema gets so severe that last year sent her to bed for over four months, her whole body was so red, wheeping, itching,so dry, the skin became so tight that she could not stretch her arms and legs, and could not hold herself up, and could not hold anything in her hands, the pain she had was unimaginable. In Ecuador doctors would not send a pacient in this condition to the hospital, because of unknown bacterias could even kill her. We had a doctor come see her, a terapists to help her stretch, a psycologists to talk to her, and everyone around us praying.....and I spent two hours a day changing her bandages, and putting her creams on, feeding her, and boy there was no way she would permit us to take her near water, for her it seemed like she touched acid. God knows what she has gone through, and all the lotions, medications, therapies, remedies she has tried. We have gone through diets, homopathy, meditation, normal medicine, natural medicine, the whole rainbow and we are once again with another episode. Three years ago after trying endless numbers of medications, inmunosuppresants, like metrotexate, cyclosporine, esteroids, an other drugs to try to control her itching, and inflamation, the doctors took a drastic approach and gave her a biologic treatment, which in reality is chimotherapy to destroy her inmune system and cross fingers that when the inmune-system regenerates itself it will be normal, in a couple of cases it worked. She was given mabtera....two rounds because of her petite size. She was 22 at the time. The results were not what we expected. We waited the 6 months for her inmune system to be strong again and not much happened. Then we spoke to our heath provider in Boston, and their doctors recomended we try mycophenolate, she took it for a year. We ended up in St. Louise Washington University Hospital for advance medicine, more than 20 doctors took a look at Irene, her medical history and recomended the NIH in Bethesda Maryland, since they told us that they don´t see cases like her often. Since then we have waited and waited, but medical protocoles say that the NIH needs more similar cases to engage in the research, and so we are back at the beginning, we do not know what to do. During this year we have discovered that Irene has one kidney, which complicates everything more. Everything affects the kidneys in some way, and we have to make sure the only kidney stays as healthy as possible, and so any decision we make has to take acount that she can not harm her kidney. Did mycophenolate work on her, yes it did, slowly with the help of a low dose of prednisone we were able to get her out of her crisis, and slowly her skin became more healthy, last April we took her off, and on May she was off the prednisone completly. We went on vacation, we traveled abroad and she was beautiful. That was on July, now October her skin has reacted again. Why am I, her mother advocating for her, because Irene has many issues, learning problems, emotionally is younger, and she only wants to live a normal life. I have made a commitment to find some answers to her problems.
    Thank you for listening

  8. both bacterial and viral. I was never well and found myself going to see my dermatologist nearly every day or week at least.