Steriod Free Therapy

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Steriod Free Therapy

Postby R30 » Thu Jul 01, 2004 7:23 am

I have a question regarding drug therapy after transplant. I am, hopefully, getting a kidney from my mum in September and my renal unit runs a steroid free regime (as well as the normal regime) for some transplant patients. When I was first diagnosed with renal failure, I was put on a high dose of Prednisolone (40mg daily) and started to develop diabetes. As this was very quick, my dose was dropped from that point on until I was no longer taking the meds.
Due to this, I have discussed the possibility of a steriod-free regime after my transplant (whenever that might be). Has anyone else been on this, and what drugs did you take? Did you have different side effects from those on steriods, and if so, what were they?
I understand that my mother has to pass a number of tests first before we can select a definite date, but all being well, it should be at the end of September. Any helpful information I can get hold of before then would be of real benefit.
Many thanks
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Steroid Free Renal Transplant.

Postby JMan » Thu Jul 01, 2004 9:24 am

Hi Ruth,

I haven't had much time to look at this but I'm aware that some units (in varying places) have tried or are practicing very minimal or no steroid therapy post transplant.

One reason I was given that steroids are still so widely used is that they are 'effective' and have been used for a long time, so doctors feel confident using them.. ... 8&oe=UTF-8

may be of use tho:)

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steroid free transplant

Postby amanda in CA » Thu Jul 01, 2004 6:41 pm

Hi, I was on a steroid-free regime from 1997 until 2002 when my transplant failed. My transplant was damaged from cyclosporine therapy and I don't think that the fact that I had no steroids had anything to do with its failure. I was initially on steroids but was taken off them when I swapped from Addenbrookes Hospital to the Churchill in Oxford. The Churchill routinelly wean people off of steroids following a transplant unless they have an underlying medical condition which warrants their use. amanda
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Postby Lumbyla » Sun Jul 18, 2004 4:14 pm

i had my transplant 1 year ago off my mum. This was done at the royal liverpool. I have never taken any type of steroid treatment and just take 100mg of cyclosporin and 500mg of mmf twice daily thats all. No rejection episodes as of yet (touch wood!!!)
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Postby nycpetit » Mon Jul 19, 2004 11:23 am

I found Rogosin Institute..which is here in NYC...and they haven't been using any steroids in ages..wish I'd found them sooner...they are now treating me prior to my transplant...I took quite a ride on 18 months of steroids, some of them as large as 60 a was quite horrible....

so now, I am taking preparation of surgery, and was lucky enough to have bumped into this unit..they do not use cyclosporin either, only Prograf (and later they try to switch this to Rappamune), and are given thymaglobin in the hospital prior to the surgery....

it's just not completely accepted everywhere yet to go steroid-free, but it does seem to be understood to have some of the highest incidents of long term side-effects on the body as a whole.
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Postby Anne in Va » Mon Jul 19, 2004 11:54 am


I am also on a steroid free therapy. Like you, I developed diabetes on steroids. I was given Thymoglobulin and steroids by IV during surgery. The thymoglobulin IV was given over six days. The steroids were reduced from IV to pills and I was off steroids in 10 days.

Thymoglobulin had been one of the drugs used in the past to treat acute rejection. My hospital was one of many involved in clinical trials to use it, not to treat, but to prevent acute rejection. The results were so good, that the trial was closed early and the drug went into practice. Usually the first treatment is given slowly to minimize reactions. If successful then it can be infused at a faster speed. My surgeon gave me all treatments over six hours instead of four. I had no reactions.

I now take 750mg of Cellcept twice a day and 1.5mg Prograf twice a day. I am very sensitive to Prograf and only need a small dose to keep my blood levels in the correct zone. At first, because of the larger dose, many blood levels were off. Low magnesium, phosphorus, HGB and HCT. I had to have two treatments with epo. The first ever! I was given meds to counter the iron, mag and phosphorus. As a result, I was not as energetic as I thought I would be and was discouraged. My doctors told me to give them six months. Somewhere between months four and five everything had fallen into place and now, at seven months out feel great. More energy than I have had in years. I also developed mildly elevated glucose levels from the prograf but nothing like on steroids. It is strange, food seems to have very little effect on my levels but I have found they peak along with the Prograf peak.

The cellcept at first caused what is termed "loose bowels." Again, with the reduction in dose, from 1,000 twice a day, and eating some binding type foods, this problem has virtually gone. Again, time took care of this problem.

This is my experience. Yours and others will be different. Different facilities use different protocols and there is also no guarantees that I will not have to use steroids in the future. Hope my experience was of some help to you.
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