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Pancreas transplant: Cyclosporine BP issues and kidney impact
I'm 43 and had pancreas transplant 22 months ago. Started on tacro, but it was causing my blood sugar to stay high. Now w cyclosporine and januvia I'm basically a type 2 diabetic and A1c in low 6's. Cyclosporine ended up pushing my gfr down to 64, but now back to 84 with lesser dosage and creatinine back within normal range. my BPs had been getting worse and worse too, but now improving with 30mg lisinopril and 12.5 carvedilol 2x a day. My cholesterol was a bit high last check too and now back on atorvastatin 10, but has caused muslce weakness in past. For past year I've had bad knee pain and bottoms of my feet really started hurting for past 6 months now w ankle swelling at times too. I'm a pretty skinny individual considering weight. Basically none of these issues existed before my xplant (BP, joint pain, swelling, cholesterol, temperature sensitivity/neuropathy). I'm now down to 150mg cyclosporine 2x per day, mycophenalic 360 1x & 180 1x day, prednisone 5mg. I think the cyclosporine and my kidneys not operating as well as previously are causing most of these issues (issues didnt exist before surgery)? can I go to a lower dosage if I'm sensitive to cyclosporine and might help some of these things? Is there another alternative to tacro and cyclosporine to consider? I think prednisone could be what's part of still causing me to need Januvia for my bgs as sensitive to it in past with bgs... do I need prednisone with other immunosuppressants? or is there a prednisone alternative as well? Part of reason for my surgery after 15+ yrs of being type 1 was to avoid kidney issues, neuropathy, foot pain issues, and now the irony is I think the surgery and meds have caused these things to occur. Any help or experience would be great. thank you all.
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I had a pancreas transplant nearly 18 years ago. My immune suppression was Cellcept and Tacrolimus originally. Then the Cellcept was changed to Rapamune because the Cellcept was thought to cause my drop in white blood count (WBC). Sometime along the way I had pneumonia and took prednisone or some other steroid for it. That spiked my blood sugar into the 600’s. I will not take anything like that again. I too have been diagnosed as being Type 2 diabetic. I am using a continual glucose monitor (CGM - Dexcom G6) and an insulin pump (Omnipod 5) for that. Why did you get a pancreas transplant in the first place?
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1 ReactionHi there! I had brittle bgs and was having unexpected lows at times and also stomach issues, which caused me to start throwing up on several occasions and then become hospitalized. I felt after 15 yrs type 1 this would help me to be more easily active with my 5 and 9 yr old at the that time. Looking back now I think a lot of diet products (like drinks) were causing the on set of stomach issues. Are you off prednisone now? did they have to substitute something else? I have bad BG issues with it too I know and still on 5 MG, which I think might be big part of why still type 2 now. I TOOK TACRO initially too for 3-4 months and my bgs were horrible, and when they switched me to Cyclosporine they got way better and I got off insulin and now take 100mg januvia daily instead. Have you had high blood pressure at all? Cyclosporine is causing me issues with it now and a real struggle. Also, something is causing lower leg joint pain... any thoughts or input? I'm thinking its cyclosporine or prednisone, or has to do with high blood pressures. Thanks so much for sharing!!!
@xplantguy1212 I too was a brittle Type 1 diabetic and had started developing complications of diabetes when I had a pancreas transplant. I was diagnosed in 1975 at age 18. I was transplanted in 2005 at age 48. One of the complications of diabetes is gastroparesis. It is an autonomic neuropathy that affects your stomach. It is a digestive issue caused by your stomach not moving food through your gastrointestinal system. It can cause stomach upsets, nausea, cramping pain, alternating constipation then diarrhea and vomiting. Was gastroparesis considered when you had your stomach issues?
The prednisone I took was a temporary medication to treat pneumonia. It caused a terrible spike in blood sugars at the time. It was not used as one of my immune suppression meds post transplant.
I was on Mycophenolate (Cellcept) and Tacrolimus (Prograf). Eventually the Cellcept was changed to Sirolimus (Rapamune). The transplant center I went to had a protocol to avoid steroids for immune suppression. But that was 18 years ago.
All meds have side effects. It is important to know what they are and also to be aware of potential interactions that may occur with other medications you may be taking. This is especially true when it is a lifelong med like immune suppression. When you are starting a med read everything you can; ask your Dr. questions, or a pharmacist can be helpful. Sometimes they have more time.
I remember that increases in blood pressure and blood sugar were two of the side effects of Tacrolimus. I think I briefly experienced that, but I quickly adjusted to it and numbers returned to normal with some tweaking of the dose. It was a long time ago (18 years). Besides I have prescriptions for blood pressure meds.
I don’t recall any muscle or joint pain associated with medications. I have a bit of those symptoms anyways but I attribute it to being old. I’m pushing 67 now. 😏
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2 ReactionsGreat information. Good sharing and the information on the stomach issues is helpful. I've wondered if I really need to remain on the 5 MG prednisone with my cyclosporine and myfortic, but something to discuss with Dr. Thanks again.