Day 279 Is There a “Right Way” to do Steroid Withdrawal?

I am enjoying the process of charting my steroid-free journey, but I also accept that there is more than one way to heal from Red Skin Syndrome. I have followed what I would call the "Itsan route" of stopping steroid creams cold turkey. I have not consulted any doctors of dermatologists during my withdrawal process and have healed slowly over the last 9 months to a point where my skin is good. However, as my photo documentation shows, the early stages of withdrawal can be very tough, and for many, unbearable, especially if they have to work.

I had a comment on my blog a couple of days ago from a lady who tried a different method from the "Itsan Route". She consulted her dermatologist, who made her a cream with weak hydrocortisone to enable her to wean slowly from the steroids. This method worked for her. She is now off the steroid creams completely and her skin is doing well. It just goes to show that we should not be dogmatic about any particular approach to steroid withdrawal, as so little is known about is at present.

Another interesting subject is the use of a drug called Cyclosporin. It is a strong immunosuppressant drug, commonly used in organ transplant procedures to prevent an organ being rejected. It is a drug that is increasingly used to treat eczema, as the immunosuppressant action can calm flares. As the drug is powerful and has many side effects, it is always monitored by a physician, who will take regular blood tests from the patient to ensure that they are not reacting badly to the drug.

Recently, one of the members of the Itsan forum tried Cyclosporin on the recommendation of a sympathetic dermatologist. This is what he had to say:

"

So, it was 3 weeks Friday gone since I first went to see the derm and started my course of Cyclosporine and was also given Protopic ointment to use once or twice a day. Well, when I went to the derm I had very severe RSS covering almost my whole body really, it was swollen, red, itching like mad, oozing and flaking. By the time I went to see the derm the next week, literally only me would have been able to tell that I had ever had RSS or was going through TSW. The change was so dramatic, I just couldn't believe it, I looked completely normal within a week, apart from a faint line on my stomach where ever so slightly rosey skin changed to white "normal" skin, but as I say this was barely noticable.

 

The dose of Cyclospine that I have been taking and still am taking is 100mg daily and I weigh (I think) just over 10 stone, I have to go back to the derm in a month when the dose will be reduced. The derm said that as I am young and otherwise healthy she would personally be happy to see me stay on the Cyclosporine for 6 months to a year, this of course is only if required. She also stated that the dose of Cyclosporine that I am taking is low and that some people take a lot more than this, but obviously we are both pleased that it is being so effective in combatting the RSS (she still calls it eczema but i don't care!) . I will also add, that after the first week, the derm told me to reduce the cyclosporine to 50mg a day, which I did for a few days but felt that the RSS was coming back, so I upped it again as the derm had instructed me to do if I saw that it was coming back.

 

At first I thought that it was the protopic ointment, which for the first week I was applying to any area on my body affected by the RSS (a hell of a lot) twice a day. The derm however told me that it would be the Cyclosporine doing all the hard work, I was sceptical of this but jsut kept quiet, after all I looked and felt completely normal, still do. However, now I do believe that it is the Cyclosporine that is having this amazing affect, as I only use the Protopic say 3 or 4 times a week now. I still itch, but nowhere near as much, and when I do, my skin doesn't flare because of it.

 

I have been to the derm 3 times and each time they have taken a blood test and urine test, they have looked at each to see if there is any sign of unwanted side effect from the cyclosporine, but found nothing out of the ordinary.

 

As you can imagine I am so pleased that I am "normal", some of you will probably tut at me on here but I have been out drinking for the past 3 weekends, socializing with friends, working and having a laugh whilst doing it, everything that I used to do, I am not restricted in anyway. I am so pleased that I went to the derm! and I know that these treatments might not work as well for other people, maybe I am lucky and I am so grateful for that if it is the case, but I suspect that there are quite a few people on this forum that would benefit hugely from using Cyclosporine and Protopic ointment."

 

This post goes to show that the individual has to choose the method that suits them best. I am neither advocating or condemning the use of drugs like cyclosporin, as I have heard both positive and negative comments about it, but I feel that we should be open minded when it comes to treating steroid withdrawal and not insist that people have to follow a certain method.

 

I hope that the man who left that comment on the forum keeps us updated with his progress as to how the drug worked long-term.

 

As for me, I am happy that I managed to get through withdrawals relatively easily, but I appreciate that much of that was due to the fact that I can work from home and that I had lots of support from my husband. Not everyone has the luxury of whiling away the worst part withdrawal period on the settee like I did.

 

How a person managed steroid withdrawal is a matter of personal choice, whether that is slow tapering or "cold turkey", and nobody should be criticised about their choice, as the end result will hopefully be the same; freedom from dependence on topical steroids.

 

If anyone has tried a different method from the accepted "cold turkey" withdrawal method, please leave a comment. I would love to hear about what worked for you.