how to get off prednisone

[Alaskaliving]

I am 10 years post transplant tak8ng 5 mg prednisone daily and am seeing some bone loss from it. Can I eliminate the prednisone from my meds safely?

[PostivelyJo]

I came off last year and am doing fine. I’m 59 transplant happened in 2019. Meds at the time of coming off Prednisolone was 5mg Prednisoline and 4 mg of Tacrolimus and 250 of MMF both twice a day.

I also take 5 mg of Amlodopene for BP..

I had been trying to come off Prednisolone after 6 months post transplant but it took 11/2 years of pestering and stable results before I was allowed.

I was told to taper it 1 mg a month . The last 2 months I took more slowly as I did find I suffered adrenal fatigue, but this was short lived. Adrenal fatigue is a concern as after prolonged usage it can stop adrenal glands from functioning , hence the need for slow withdrawal to allow their normal function to return.

My creatinine and EFGR both went up. I think although cannot be sure that my back and muscle aches reduced considerably and mental health less reactive , but a lot of how we feel can be an anxiety response .

I think it’s there as a safety net in many cases . And many Drs seem pro removing it from the protocol. But as we all know each of us has our own unique transplant fingerprint and what works for me won’t work for others . And I wouldn’t do it without advice .

It felt scary at first , but I’m so glad I’m off it.

It gave me the confidence to come off MMF too . I changed to Azathioprine because GI issues were so bad and I felt another improvement.

Best of luck

[Alaskaliving in reply to PostivelyJo]

Thank you for your reply. We are on all the same meds but I also take carvedilol.

[Eyak1971]

After 2 years on prednisone I ended up with avn. Resulted in one hip replacement and am looking at another in the future. My doctor slowly tried to take me off it. But ended up with possible rejection. Everybody is different. There is no simple answer. Some achieve dropping prednisone some like me end up with serious side effects.

[PostivelyJo in reply to Eyak1971]

very tough for you .

[Eyak1971 in reply to PostivelyJo]

Thanks for replying.

[peregrin]

I had my transplant 3+ years ago. I'm taking 5 mg of prednisone per day. My doctor in northern New Jersey won't even consider taking me off.

[Darlenia]

My hubby is on 5 mg/daily of prednisone too. We discussed going off of it since my hubby is diabetic and prednisone contributes significantly to that. (His diabetes is now taking aim at other organs.) He received his transplant in mid 2021 and it's an average, not perfect, match. His team is thrilled that his current protocol is very stable and working so well. One nephrologist stated it's the "magic" med combination for him. He also noted that, due to his age and antibodies post rejection, my hubby would have a very hard time getting another transplant. We are certain that dialysis would take over our life if things go upside down with his current transplant, so it's simply not in our best interest to remove the prednisone. We noticed, in another kidney transplant group, that someone did indeed go into rejection after going off prednisone. It can be a reality. I'd like to add that tacrolimus also affects the bones and joints. A liver transplant friend, who only takes tac, is constantly undergoing reconstructive surgeries from that immunosuppressant. So the problem goes beyond prednisone.

[Betsymydog in reply to Darlenia]

My doc has me doing belatacept infusions instead of tacrolimus. I’m happy to be off the tacrolimus. Research has proven patients who have the infusions are much less likely to reject 7 years down the road from transplant. I would ask if that is an option. Good luck!

[Darlenia in reply to Betsymydog]

I'll look into it. I think the reason my hubby is still on tacrolimus is distance - we're located a good two hour drive away from our center involving fickle I-95 that can slow down or stop traffic for more hours. I definitely like the idea that it doesn't increase diabetic sugars as much as tacro. Thanks for bringing it up.

[LisaSnow in reply to Betsymydog]

Unfortunately a meta-analysis (combining multiple drug trials to draw conclusion) showed the opposite "The evidence reviewed in this meta-analysis suggested that belatacept-based maintenance immunosuppression regimens were associated with an increased risk allograft loss in renal transplant recipients with equivalent renal functioning against standard tacrolimus..."

I think if the drug you are on works for you then it works, but it is premature to say one drug is universally "better" than others.

The article can be found in the link below.

ncbi.nlm.nih.gov/pmc/articl...

[DexterLab]

My transplant was four years ago, and Prednisone was not a regular part of the protocol at my transplant center. You really need to coordinate with them on any change in your meds. It may depend on the quality of your donor match.

[WYOAnne NKF Ambassador]

When I was 15 years post transplant,/I worked wih my nephhrologist & was able to wean off the prednisone. I/slowly had to do it& make sure it did not affect my creatinine. Back then I was showing signs of osteopenia. I am 23+ years post transplant now. no bad effects

[Alaskaliving]

something to hope for!

[littlelinda50]

Good luck with that! I was put on prednisone by a doctors mistake and lie! It's been 3 years and 50 lbs later. I have been angry over it. I am slowly coming to the conclusion I can't stop the weight gain and pray I don't get so fat my boyfriend no longer thinks I am attractive. Yes he loves me for me but also its hard to be attracted to someone who is fat when they never were. I have few clothes because I can't afford to constantly but new clothes. If you find a way please let me know!!!!!