Post Number: 27
|Posted on Sunday, March 25, 2012 - 09:51 pm: ||
Hey--I was wondering if anyone has experience with alternate-day prednisone dosing? I am almost 5 years post-transplant with no rejection incidents thus far. I'm currently taking 5mg of prednisone a day, but pretty unhappy about it. I have the usual prednsione problems but the one that makes me most unhappy is that no matter what, I can't seem to lose weight. Doesn't matter how healthy I eat or now much I exercise, it remains the same. I'm only slightly overweight, maybe 10 or 15 pounds extra, but it all accumulates in my stomach, most likely because of the prednisone. My transplant doctor thinks it's caused by the prednisone and cushings syndrome. I am going to see him for clinic next month and wanted to talk to him about some options with the prednisode. The obvious choice would be cutting it in half to 2.5 mg a day. But I have also been reading about alternate-day dosing with prednisone in kidney transplant patients. (http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2870%2990974-8/abstract)
I was wondering if anyone has tried this before and if you had any problems with rejection on this prednisone schedule. Also, did you find it decreased the bad side-effects of prednisone or helped with weight loss? Thanks!
Post Number: 5399
|Posted on Monday, March 26, 2012 - 08:21 am: ||
Ah, yes that last 10 or 15 pound weight loss syndrome! It sounds pretty real doesn't it? I have been fighting for the last three years to get rid of that last 10 pounds, Lizzie. I take 2.5 mg of prednisone per day. I have that 500 calorie difference between what I eat and what I burn, and I still cannot lose that last ten pounds. I read food labels and base my intake on measured quantities. I think that some of these labels may be incorrect, because I am doing everything by the book. I just wonder sometimes if I added 10% calories to the foods that had labels, if I would not be better off. I have been successful at keeping my salt and saturated fat intakes low, but still keep about the same weight. (It varies about 3-4 pounds) You can ask the doctors about alternate day medication, but I am not sure how much good it will do. Good luck in your quest!
Post Number: 465
|Posted on Monday, March 26, 2012 - 01:26 pm: ||
I seem to remember (but I could be wrong) that the alternate day therapy was so that your own adrenal glands would not shut down completely. Since you are 5 years out, I'm not sure that you would be able to do the every other day thing. As for the weight loss, I know that for everyone (diabetic, transplant, whatever) those are the pounds that are the hardest to lose.
Sorry I can't help. Best of luck.
|Dx with T1 in 1966 |
Kidney tx in Minneapolis 2002
Pancreas tx in 2008
Post Number: 162
|Posted on Monday, March 26, 2012 - 06:11 pm: ||
I've asked my nephrologist if lowering the dose is possible for not only do I have the weight I have anger issues (I am at 5 mg daily.) He said that studies show if prednisone is reduced or eliminated early after transplant there is success but if done later there is a higher chance of rejection.
There is not much information in the link you posted and the date on it is 1970. I would look for more recent studies. This one from 1979 disproves it:
Here is a 1992 study where dose was changed 90 days post transplant:
I couldn't find anything more recent.
I've struggled with weight my entire life. I'd rather have some extra pounds than be on dialysis.
|Diffuse Scleroderma |
Kidney Transplant March 11, 2010
St. Barnabas Medical Center, Livingston, NJ
Post Number: 265
|Posted on Tuesday, March 27, 2012 - 07:51 am: ||
Interesting studies. One thing to keep in mind though is that the 1979 study is based on 1979 drug regimen. I'm not sure what the regimen was at that time but it definitely wasn't the triple-drug regimen most of us are on now (CNI + MMF + pred). It was probably more like aza + pred back then.
|Received kidney Mar 16, 2011, from my brother! 3/6 match |
St. Joe's, Hamilton, ON
Peritoneal dialysis Nov '08 - Mar '11
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008
Post Number: 238
|Posted on Tuesday, March 27, 2012 - 08:50 am: ||
I'm on 2.5mg per day pred and I'm relatively happy with that.. I've occasionally been on 5mg per day in the past and was much less happy with that.
As for weight loss, I think it just gets much harder as we get further out post transplant and older.. I'm mid 40s now and it's really tough to take the 7-8lbs off that I put on over Christmas .. just about done it after 3 months!! -- and so easy to put it back on too!!
I think that if you reduce your pred to 2.5mg from 5mg (with your neph's consent of course) they may suggest that something else is increased slightly to 'compensate' for the reduced immune suppression effect of the extra pred. I guess if they do suggest that, then it becomes a case of which side effect do you like least .. that from the 5mg vs 2.5mg pred or that from the increase in the other med. Maybe they'll let you try for a while and see how you feel about it.
My experience is that I feel way better when I'm on 5mg pred but the likely longer term side effects aren't great (for example my blood sugar goes up a fair bit) .. while I feel I have more short term side effects from higher tacro or azathioprine (but less grumpy and lower blood sugar).. so I imagine it depends on the person and your circumstances!
Post Number: 148
|Posted on Tuesday, March 27, 2012 - 09:00 am: ||
Ive been on 7.5Mg every other day for years now, and im fatter than ever. I do low carb /natural carb and do intense bootcamp three times a week. I lose a pound a week , I used to lose 5 pounds pre Transplant. Sucks
|Transplant~7/01 (living donor) |
Dialysis- CAPD, APD,In center hemo and SIHD
Transplant~ 8/07 (deceased donor)
Post Number: 5402
|Posted on Tuesday, March 27, 2012 - 10:00 am: ||
Also, I have to remember that as I get closer to what I consider my "ideal weight", the harder it is to lose it.
Post Number: 24
|Posted on Wednesday, March 28, 2012 - 05:28 pm: ||
First a few more links to throw into the mix:
Alternate-day steroid dosing improves growth without adversely affecting graft survival or long-term graft function. A report of the North American Pediatric Renal Transplant Cooperative Study. (1996)
Long-term alternate day steroid therapy in renal transplantation. A controlled study. (1982)
The prescribing information for Prednisone from this very site (advocating alt day)
http://www.transplantbuddies.org/library/drugs/full/prednisone.html#DOSAGE AND ADMINISTRATION
The key thing seems to be, as expressed in this last link, is that you have to take double the dose on alternate days. This, somehow (something to do with the way Pred works across the daily cycle) is supposed to reduce the risk of osteopenia, growth stunting (in chidren) and (I think) all the other Pred side effects.
I moved myself to alt day dosing a couple of months ago now. I am breaking the rules also in that I haven't set myself taking double the dose on alternate days. I was extremely pleased to find this alt day dosing information because the near mania (and then emotional come down in the evenings) the high dose of steds was giving me was pretty unbearable.
Two months into the alt day and I have noticed I feel less hyper on sted days (and like a zen master at times on the off days) and I have no come downs these days. I noticed a while ago I started feeling pains in my teeth (yes!) - I guessed this was due to the calcium leaching from the bones steds causes. This has yet to resolve but I'll keep an eye on it.
Generally, from everything I've read, steds are really undesirable long term. If you can get off that last 5mg (in favour of something else) I would recommend it. If not alt day might be of help.
I'm from the school that believe in taking this health stuff mostly into my own hands, so I've alt dosed on my own (my current doctors hadn't heard of it) but still there are likely risks with reducing immunosuppression (though a load of alt day dosing info suggests not, except that one from 1979 above) which you should take into account (of course).
Also, if you double the dose on alt days I think you can change to that straight away. If you do reduce though do it very very gradually or you can have some pretty serious depressive / lethargic episodes (I experienced that during a chest infection - took myself off them cold turkey = worst depression of my life).
Though how much immune suppression 5mg causes anyway I would wonder about - that's around the amount the body produces naturally without Pred (though of course it stops doing so while on Pred) so I wonder how much you could lose by alt day dosing anyway.