steroid reduction

[Aileen]

Since Spring of what is now last year, I have been on a steroid reduction programme. My tx (pre=emptive, live donor) took place in Feb 2009, and was a mismatch of 112 or 2/6. I have been consistently well, with a creatinine in the 70s and corresponding eGFR also in the 70s. There have been no problems during the past 4 years and my consultant took the view that I could begin to withdraw from prednisolone, and I was happy to go along with this. All went well, I was monitored on a two monthly basis, and despite the decreasing prednisolone dose, I maintained the same good creatinine levels... Until I got down to the final 1 mg of pred, and my creatinine jumped from 72 to 129. After 3 further blood tests the creatinine remained high (for me) and 2 weeks ago, I went back up to 2mg prednisolone daily. and surprise surprise, yesterday's blood test (on RPV) shows creatinine of 76. I see my consultant on Thursday but I would expect him to confirm that 2mg prednisolone is what it is! I can remember two or three others mentioning that they were also coming off pred; just wondered how you are getting on with that, and if anybody mirrored my experience? No complaints, 2mg is a small price to pay for remaining so well. Happy New Year to everyone
A.

[Kipper]

Hi Aileen I was weaned of Pred pretty fast, about 6 months from memory, no side effects and creat consistently low around 90, it's bobbed a bit up to 110 and down to 80 but is generally low 90's. Just over 3 years post tx for me and I feel completely normal ( how wonderful something as simple as normal is )

I'm glad to be off Pred especially a high dose ( ate like a horse ) but if I had to be on 2mg I'd consider it acceptable, another point is it may not be forever, they may be able to reduce further or altogether. Strange how some of us are taken of pred fast and others less so or not at all, ask you neph what he thinks regarding long term use.

Happy new year and long may your kidney continue to take the pee out of you ( that's a tx patients joke )

[Thumps]

Hi Aileen,

I'm currently doing pred reduction/removal. I'm down to 2mg a day and hopefully will be down to 1mg from the end of January, then off. No problems so far. My cret has never dipped below 120, I'd be elated if I had your numbers! Glad things are going well for you And yes, I'd agree, if it was 2mg that's still a hell of a lot better than the 20 or so I was on at the beginning of all this. Good luck for the year ahead

[AmandaClare]

I'm down to 1mg now (after 20+years on pred) with no apparent effect. I had thought that going the last step was a formality but after reading your post I'm not assuming that any more.

Sorry you can't come off them but 2mg is a low dose.

Annoyingly I still eat like a horse. I've had to accept that I'm just greedy.

[Chris Wright]

That's all fascinating.

Despite being over 31 years transplanted i'm still on 7.5mg/day.

After reading those comments, it's definitely time to come down to 5mg as a first step and then see.

And delighted to see you all doing so well.

Chris

[Chris Wright]

Sorry, as a belated thought.

It could be that am still on a higher dose because i am only only pred and azathiaprine.

Are you other guys who are coming off/down on any other anti-rejection drugs?

C

[Thumps]

Yeah, I'm on Myfortic and Prograf as well.

[AmandaClare]

Yes, I'm on ciclosporin and azathioprine as well as the (tapering) pred.

[Chris Wright]

Thanks guys, appreciate the feedback.

Might try and get down to 5mg a day and then see.

C

[Aileen]

Hi folks, just a quick update. Serum creatinine has returned to the low 70s since returning to 2mg prednisolone daily. This has been consistent through the last 4 blood tests so they have concluded that there was a degree of hypoadrenalism and subsequent renal perfusion also contributing to the raised creatinine levels. We may try to reduce again at some point in the future but I'm not in a hurry! I also take myfortic and a small amount of prograf as immunos. I have been asked to try to put a little weight ON (that's a first!) but in our recent move from the east midlands to my home town in central Scotland I lost a stone without even trying.
Best to all