immunosuppressants

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kris

immunosuppressants

Postby kris » Thu Sep 24, 2015 5:35 pm

I have a transplant scheduled for next week, and I'm concerned about prednisone. I think of it as an effective but awful drug. My mom was on it post-transplant (1987) for the rest of her life, and she struggled with side effects. My brother had his transplant in 2004, was on it for only 24 hours, since then has been on celcept and prograft and is doing fine. My doc says I will be on prednisone for the rest of my life. Are other people still on this drug? How are the side effects? Should I push my doc on why I need this? (It has nothing to do with my donor - docs said I will be on prednisone regardless of how well my donor matches.) Thanks for any input.

Andy

Re: immunosuppressants

Postby Andy » Thu Oct 22, 2015 10:08 pm

Great question - I had my transplant a week ago and am already off prednisone. My transplant was at mayo clinic Arizona. I live in Hawaii and went to get evaluated there and they told me I would have to take prednisone for life. I encourage you to demand info or threaten leaving to another hospital. Maybe they'll tell you why. Appears to be based of transplant center from my experience. Good luck.p

kris

Re: immunosuppressants

Postby kris » Thu Nov 05, 2015 8:57 am

Andy - thanks for the feedback. Apparently there is a split at my transplant center - the "old school" docs insist on prednisone. I pressed the issue, and am not on prednisone. Had my transplant Sept 9, doing great. How are you doing post-transplant?

Andy

Re: immunosuppressants

Postby Andy » Tue Dec 01, 2015 9:19 am

I'm doing really well - I'm a little scared that I'm back in Hawaii and not under Mayo's guidance but no complaints. I'm surprised that I get fatigued 5 weeks post transplant but my white blood cell count is low so maybe that is the culprit. My kidney is working great and Mayo's main concerns are CMV which is why I'm on Valcyte and I need to get tested monthly for Epstein Barr virus since I was not ever exposed and my donor kidney had the virus. They changed my prograf levels again this week, still too high so that should help as well. How's everything with you? Great news on the prednisone - my dad was on it for his whole life as well so I knew it wasn't good either.

Glenda61

Re: immunosuppressants

Postby Glenda61 » Thu Feb 11, 2016 9:46 pm

I have taken Prednisone for almost 8 years. I asked my doctors many times if I could come off. The answer was always no, you will take the rest of your life. After reading the studies of graft loss with and without the drug, I felt it was safe to take myself off because of all the side effects, and I have most of them. So far I am happy. Even my labs are better, believe it or not. Plus I lost 15 lbs. in the 3 months I've been off. This was a personal decision and I do not recommend to anyone without your doctors approval. Plus if not weaned off the drug properly, it can cause death.

Andy

Re: immunosuppressants

Postby Andy » Fri May 13, 2016 3:45 am

That's awesome Glenda - good for you taking charge and driving change. I was put back on prednisone for the last 4 months but am beginning to take less with plan to stay off. My issue has been low wbc so they placed me on prednisone a while back. I had to get a neupogen shot, it got so low so they removed cellcept but I've started taking half my original cellcept after some time has passed and Wbc has improved. Hopefully when they switch back to all cellcept, no prednisone I won't have any wbc issues. Been taking prograf all along.

bjdallas

Re: immunosuppressants

Postby bjdallas » Sun Aug 06, 2017 11:56 am

I will soon be 74 and received my transplant 23 years ago, after being on dialysis 5 1/2 years, with a perfect 6/6 cadaver match. I was put on cyclosporine and prednisone at that time and have been maintaining 6mg of prednisone for the last 22 years. Fortunately I am not prone to bladder or kidney infections but do have liver infections occasionally. Even though I still have blood in my urine on rare occasions and my transplant is aging, my creatinine is holding at around 1.0 and I am 'upright and functional' as I say. My best advice to you is follow your meds and healthy lifestyle carefully and listen to your doctor for his or her advice. I wish you all well and hope you can treasure each day with the gift you have been given.

miraclegirl

Re: immunosuppressants

Postby miraclegirl » Thu Aug 10, 2017 11:46 am

Wow! Dallas.....that is amazing that at your age and for how long you've had your kidney you are still at 1.0 creatinine! Amazing really. I am almost one year post-transplant from a living donor, creatinine fluctuating up to 1.29 at times. I'm on Cellcept (mycophenolate) twice a day, 5 mg. prednisone and time released tacrolomis. Seems like the right combination for me but have had diarrhea for many months now. Some days are bad and some days are fine. Doctor suggested changing me to Imurun instead of the Cellcept. I'm not very keen on changing these meds because of how everything is work so far.

aeontobot

Re: immunosuppressants

Postby aeontobot » Wed Aug 01, 2018 5:37 am

Hi Glenda, good job being so assertive and definite regarding your prednisone. I have been on preds for 7 years and have some nasty side effects ranging mainly from skin bruising to significant skin tears from the slightest bump. In your post you made reference to empirical data summarising statistics surrounding the failure rate of those who do and do not take oral prednisolone. I, for one, would be very interested to also read your information and would be most grateful if you could provide a link to your research.

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