Post if you have experience with this side effect of medications.
New Drug based onset Diabetes: Post if you... - Kidney Transplant
New Drug based onset Diabetes
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Porter20
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I estimate a good number of people with transplants will get medication related diabetes from their immunosuppressants. Only those with a predisposition to diabetes usually wind up with this outcome, others are unaffected. My hubby was completely off all diabetes meds - the moment he received his transplant, the diabetes resurfaced instantly. He was put on insulin and now wears a Dexcom monitoring system to help keep his glucose highs and lows in check. Lots of steroid based drugs are capable of doing this, it's not just prednisone Drugs.com can help you with figuring out which drugs have this side effect.
it’s the same for me. My diabetes managed without medication for about 12 years pre-transplant but I’m on insulin now post-transplant. That being said, I’ve entered my 10th month post transplant and I’ve had to decrease my insulin dosing twice. I’m now at a point where I take no short acting insulin with breakfast and a much smaller dose with lunch and dinner. We’ve also decreased the dose on my long lasting insulin. So, perhaps with time I may be able to manage this transplant-related change in my diabetes with a low dose of long lasting insulin only.
Jayhawker
Wonderful! My hubby has reduced his too but he doesn't think he'll be able to get off it completely. Not unless his kidney fails and he doesn't want that, for sure.
Yeah, I expect I’ll be insuline dependent at least for the life of the kidney. My bigger issue is this CMV. It’s already back for a second round. Ugh! I have a pretty bad time with the medication o have to take to knock it down. Valcyte and my body don’t like one another at all. I sure hope I’m not going to be dealing with CMV recurrence every 4-6 weeks followed by 4-5 weeks on Valcyte for the duration of this kidney.
Jayhawker
Not again! Everyone, whether on dialysis on with a transplant, is a warrior. Praying your CMV is sent packing for good sooner than later. Hugs...lots of hugs sent your way.
I made it clear in my last appt (last Tuesday) that this wasn’t an effective treatment plan for this CMV. I said I expect to hear what they will do to greatly minimize these reoccurrences in my next appointment in September. I encouraged the team (4 nephrologists) and possibly the nurses to have a team meeting to discuss my case and reach a consensus about a treatment plan that they would then each commit to following long enough to evaluate its efficacy. We’ll see how this goes. I may have to reach out to the transplant center administrator. But I do think a part of the issue has been they each approach this differently and patients are sent to whomever is available for each appointment. So a real lack of consistency. Three of the four disagree with the fourth one pulling me off Valcyte 2 months early. However, at this point that is water under the bridge. We are where we are. We have to move forward from here.
Jayhawker
Sheesh....it's interesting isn't it to see a "team" in a room that doesn't work as a team. My hubby went through a very bad experience with post-op a-fib...one of my hubby's nephs wanted his heart shocked into rhythm, everyone just numbly nodded, so he was shipped off to various floors for scans and scheduling, lots of hoopla. Finally the transplant center director showed up, and waved everyone aside, told everyone he was clearly too weak for that, and put him on meds immediately. I just sat there...it took days to finally getting the matter settled. Keep moving forward, Jayhawker, as steadily as possible. It's good to get a clear path forward.
No the Prograf does it for sure.
Prograf really messes you up. So many side effects. I've lost control of my digestive system, developed CKD (stage 4), uncontrolled HP. There are other immunosuppressive drugs available. I would recommend anyone looking at a kidney transplant discuss what other drugs are available.
I forgot to mention. I have never had diabetes before liver transplant. Now pre diabetic. I expect it will cross over soon
I never had diabetes in my life , not even in pregnancies. 2 years after transplant I was diagnosed with steroid induced diabetes. I was absolutely gutted!
So sorry...diabetes is a big life change too. Immunosuppressants really need to be improved.
Yes, I have NODAT. It's a lot of extra work.
Yes. Never a sign of diabetes before transplant, no one on either side of family ever had it. And here I am. Not happy.
Feel worse than before transplant although I am controlling the diabetes/insulin resistance pretty well (major diet/lifestyle changes).
I had a live donor so gotta keep that "everything's great" attitude with him (a first cousin whom I don't see frequently but am in touch with and this is not his fault; actually the kidney is doing incredibly well). So tired of friends, family and colleagues talking to me about how great it is that I got a transplant and how good I must feel. NOT.
Who goes to all the trouble to get a new kidney, expecting to feel awesome afterwards, and instead ends up sicker than before?? I must admit that I regret the transplant on some level and wish I had waited (I wasn't on dialysis and feel I could have gone maybe another year as I was; maybe with more research I could have at least been more prepared for this).
I felt like I'd been punched in the gut when the neph told me about 6 months out that oh, by the way, your A1c says you are now diabetic, go find a PCP to deal with it.
I'm a year and few months out from the transplant. Good luck to all of us who are dealing with this.
So true. I am 2 years post transplant. I have a family member who donated his kidney to me. When he recently asked about how I was doing, I told him of some of the difficulties I was having related to my immunosuppressant drugs. His reply was, “Well, I guess you could give the kidney back.”
Jeez!!
Thank goodness for this forum where we can speak our truths and be understood and supported.
People forget a transplant is a treatment not a cure . I’m very grateful for mine, I was on dialysis for eight years . But I have deseases now that I never had , diabetes, ulcerative colitis . My kidney is doing great but other things have me so fatigued, some family members just don’t get it
I’m so sorry for the struggles you’re enduring. Ours is not an easy path, but it beats the alternative! Believe me when I say, you do not ever want to be on dialysis, especially hemodialysis. I found it so traumatizing that I literally cannot bring myself to even look at the outside of my old unit!
I also struggle with a lot of health issues post kidney transplant (insulin dependent diabetes, high blood pressure, high cholesterol, glaucoma, and heart problems). Every time I’m diagnosed with something else, I just tell myself I will deal with whatever I have to. All that matters is that I’m alive and not on dialysis anymore. The toughest part for me is the amount of money that my family spends every month on all of my medications and doctor appointments. I got sick at 20, and never expected to grow older. Here I am now quickly approaching 49, and worry that if I make it to retirement age, my husband and I will be forced to choose between eating and paying for medications. It’s a never ending pain in the butt, but again, it beats dialysis and death! Everyday I thank God for my life, and when I feel bad for myself, I think about all the people on dialysis, and those who die before they can get a transplant. It helps me stay grateful!
It's sad. I'm sorry. We told our transplant center that it would be good to tell patients in person about possible outcomes - especially the problems. I assume nothing has changed. It's probably covered somewhere in the small print on the paperwork that no one has the time to read. Smh.
My team told me but at that point I was good. My family has it so I figured I would deal with it anyway but, trying very hard to stay pre-diabetic at least for a while.
Ugh🙄
Good! In addition to the things you mentioned above, keep a close eye on sugars and carbs - shocking how quickly certain foods can spike your glucose after a transplant. We pretty much think "caveman" when get groceries. No more processed food, etc. Lol. Really hope you can keep it far away.
I take cinnamon and am starting olive oil daily. I have read get oils back in your body to reduce inflammation and lower glucose. I will post if it works. My numbers just continue to climb. I am not there yet. I wear a glucose meter to try to avoid it being full blown diabetes.
The low dose of prednisone I take has caused diabetes. And the post-transplant doctor is totally against withdrawing the prednisone.
That's probably the biggest culprit among the spectrum of drugs. Shocking how many drugs are involved including Envarsus, and Cellcept. For men, even Dutasteride, a synthetic steroid, may contribute. Sometimes I think there's a lot of merit for an artificial kidney, if it's ever approved, because it eliminates immunosuppressants and also those hidden viruses that come with human transplants.
Yes have read rejection is 30% higher. Some can do it though and some centers like Duke do not use steroids. Many other transplant don’t use it anymore either.
I think the decision to withdraw steroid is very patient specific. Some patients are medically at higher risk of B cell mediated rejection which is notoriously treatment resistant, and physicians are much less likely to agree removing steroids which definitely protect the trabsplant.
I got cancer on my tongue eight years ago. My doctor thinks it was from a slightly elevated level of Prograf . It was only elevated for about 6-8 months. I have not had a re-occurrence of the cancer but had to have a partial glossectomy and I have to be followed forever. I never really worried about, nor knew about, the dangers of prednisone until I started hearing about them on this site. I now know that it has contributed to my osteoporosis which started as a result of kidney disease. I am 18 years out from a kidney/pancreas transplant and am doing incredibly well. My numbers are wonderful, so I am afraid to change ANYTHING! However, when I see my doctor in November I am going to talk to her about the diabetes risk(which I did not know about either). I had Type 1 from age 5 until my transplant, and I have enjoyed the freedom from insulin and diets that I gained from the transplant. I was told that if (or when) my pancreas fails I will be a VERY brittle Type 2 diabetic. I do not look forward to that!
18 years? That's amazing. I wouldn't want to risk that either by changing anything.
One thing to consider is that many other non transplant patients also take prednisolone for life or frequent flares, but diabetes does not seem to be their first concern or known worry. Why? Because transplant itself is a major change to our biologicsl pathways that regulate metabolism. Having a "replacement organ" to do your own's function is not simple like replacing a dead battery. Our bodies are relearning new receptors and signaling pathways to work over or work around, with heavy duty help from the medications working together. Yes many health condition risks are now elevated from having one or more foreign organ(s) inside us. That is the fact with or without medications. My biggest fear of all risks is cancer, because all others can be managed with patience, and we can still live a highly functional life. I understand the frustration of "new problems" after transplant, but I also know the data to understand that the alternative is much, much worse. Just want to share my perspectives, and to give my best wishes for all our uncomfortable issues to be managed satisfactorily.
I would think if you are 18 years out your body would have developed diabetes if you were to have it.
Best of luck!
Thank you, Porter. You are right, and IF diabetes does happen, I had years of experience before my transplant. I'll deal with it. No sense worrying about what may or may not happen.
Thank you, LisaSnow. Yes, it is amazing that I am doing so well after 18 years (In November). Sure transplant brings risks and challenges, but I would not be alive if I had not had my transplant. I had been diabetic for 40 years and I😒😊😊😊 had two heart attacks while on dialysis. I had to get my treatment through a port (?) in my chest because the fistula in my arm failed after about one year. So, I would not have lived too much longer had I not had the transplant. Despite any problems that may (or may not) arise, I know how lucky I am to be alive! You are always the first to reply to people on this forum, and you always do so with kindness and intelligence. My best wishes go out to you! 😊
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