I had my kidney transplant 2-1/2 years ago and my lab tests are consistently good.
I'm taking everolimus, mycophenolic acid and prednisone. The prednisone is causing weight gain, diabetes and, possibly, hair loss.
I tapered down to 5 mg of prednisone over two years ago. I'm now wondering whether I can reduce further or even stop. My post-transplant nephrologist works for the same hospital that did the transplant and is resisting the change.
It's my understanding--which may be flawed--that if signs of kidney rejection are handled quickly, there is little risk.
Any advice and thoughts appreciated.
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peregrin
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I’m on MMF and Tacro . I’ve been on 5mg maintenance dose of Prednisone for nearly 21/2 years and am now tapering off it. I’m having monthly blood tests to see if Creatine increases but so far it’s all good.I had to really push to come off it. Asking every3 months after bloods if I could… and they finally said yes. Not everyone on my team is ok about it but the they are happy if lab results stay good. It’s. Tricky one for the doctors because it keeps us safe … their main concern, bit I think it’s a tough drug to be on. I’ve suffered with back pain, vision problems, bruising , weight gain …
Tapering has to be slow to allow adrenal glands to kick.
Keep trying … hopefully you’ll get somewhere . A few people are off it on this site. Some hospitals only use it in the early stages …
I’m one of those people that was able to get off Prednisone 5 weeks after transplant. It really depends on your personal health, the level of match with your donor kidney and your hospital’ protocol.I hope you are able to come off Prednisone. It certainly helped many of my side effects.
You asked about rejection. There are two main types of rejection, acute and chronic (humoral, or antibody-mediated) rejections. Acute rejection is relatively easy to treat with aggressive immunosuppressive therapy in hospital. Chronic rejection unfortunately, has a bad prognosis because no universally effective drugs are available for it. So yes, by changing your treatment to avoid "side effects" you will be taking on a new risk. Increased creatinine from your lab is actually the result of damaged transplant. So by that time, your would have already suffered some significant cellular damage (assuming it's not from dehydration or infection). Best of luck and I hope you and your medical team can come to an agreement.
I agree it’s the tacrolimus that causes the hair loss, personally I would rather loose hair and keep my kidney rather then take any risk. I also have Lupus and prednisone is the medication that has always been given for treatment for it. Prednisone helps keep my kidney and also keeps my lupus in check. There is a different medication that can be used in place of tacrolimus but my team says it’s not as effective.
They can do a blood test to see if you can stop them I have been on predisone for over 40 years and will never be able to come off them...... Good luck
I’m in the same boat. One of the doctors said yes if no problems after a year, the other one said no but I’m not giving up! I’m sick of the weight gain and I don’t know what causes constant pain!
I wouldn't exactly say there is little risk if you do get a rejection, it all depends on many factors that your doctor is best to handle. If you do get any rejection it could cause you to permanently lose some function in your kidney or even the entire kidney.
That said, I asked my doctor about getting off prednisone several years after my transplant and he ok'd it. I had to taper from 5mg to 0 over 6 months and have my blood drawn every 2 weeks during that time.
Even if you do get an OK, just make sure you do it very carefully. If a rejection episode happens, even if they successfully treat it, it increases your future rejection chance by several folds.
Hi Peregrin,In answer to your question about Prednisone, I wouldn't lower lt anymore. You adrenal gland needs it to function at this point and it is relatively a low dose. I am 40 years out as of May 4 of this year and although there have been times when I was on 100mg of the stuff things have changed now and I am also on 5mg a day. I refuse to use it as a pain killer and will only take my 5 for the kidney and will also let whomever medicate me with it when I had Pericarditis. Stay away from sugar and carbs. Be sure your Glucose and A1C are tested 3 times before you are labeled diabetic. I don't think it is causing hair loss. Your anxiety may be contributing to the hair loss.
The Mycophenolate is better then when I was on Azathioprine. I have cancer due to the Azathioprine that probably started 25 years ago. Mycophenolate can also cause diarrhea, but there is a substitute my insurance wouldn't pay for. I use a lot of Imodium and it helps. It gets dicey when my lower lumbar pain kicks in, but still can work at higher doses. In my state, we have to sign for Imodium and it is kept behind the pharmacy counter.
I don't know anything about everolimus. Just leave the meds as is right now. It is to early to start fiddling with them.
Find a meds doctor. They usually work through psychological services. They can medicate you with an anti-anxiety which would help negate the Prednisone side effects. Stay away from Valium. It makes it worse. They will more then likely want you to take an antidepressant too. Try it for a couple of months. Trintellix is good, but interacts with blood thinner, peri-calcitriol and many others. Something about the CY something enzyme and being a slow metabolizer like me.
You just have no idea how much I worried all the time and here it is 40 years later. Let me know if I can help or didn't answer you question. 🙂
Hello peregrin, My spouse the first 14 months after his Nov 2018 kidney transplant had so many problems with low grade rejection, then red and white blood chemistry all messed up, CMV virus. By Jan 2020, finally things were operating in his body well. Now the doctors with transplant are hesitant to change his meds: prednisone 5mg a day, tacrolimus and cellcept. It took a long time to get all these meds working well in his body and now the doctors don't wish to "rock the boat". All I can say is everyone is different in this transplant journey. Talk and push your doctors to really listen to what changes you'd like to see happen in a slow fashion for their permission. I would not do anything without their oversite. I wish you the best.
Hi, I am 18 months post transplant and have only ever taken mmf and tacrolimus . I had my transplant at Manchester (UK) and they don't put people on prednisolone. Other hospitals here do, just different policy. Kidney function is maximum, gfr 90+. Surely that shows it is safe not to take prednisolone?
(Inform Edit: My doctor doubled the predsinone due to the sudden increase in creatinine.doctor thinks that it happened cause I am not taking it) I am on 2.5mg but I dont take the prednisone last two years but my doctor warned and said " it would be bad". No problem yet.
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