Hard time with meds

[steeens_]

Hi everyone! I had my transplant around 8 months ago, and was doing well for the first three, higher energy than before the transplant, excitement and was feeling super positive about the whole thing. Then the meds really started to mess with me. I switched from tac to everolimus because the tremors got so bad that I could barely hold a cup of water. After a couple weeks I started to develop even worse symptoms and ended up in the hospital several times with a fever of 105. Since then, I transitioned back to the tac and I’ve gained 30 lbs (which is a lot for me) I’ve always been quite thin, and it’s made working out, which is something I typically love difficult, especially with swollen joints. It’s felt as though the medicine has really also been playing with my mental health - feeling quite down and uninterested in the things that I normally am, plus extreme fatigue and pretty bad memory issues. My neph said it’s not as common (but not unheard of) to have such extreme side effects and has since put me on cyclosporine. Just wondering if anyone else has gone through this and if the transition to a new med helped??

[LisaSnow]

All patients feel "off" post-operation. It is not only the surgery but also medications and your body processing the changes (including getting used to new medications). You should expect at least three months to slowly and safely transition back to your functioning old self. Please stay patient and report any new symptoms to your medical team.

[gardengirl97301 in reply to LisaSnow]

My transplant doctor told me it would take about 2 years to feel really normal again. I felt goofy and not 100% like myself. Sure enough right past my 2 year anniversary I started to really feel like myself again.

[Gardner-NY]

Hello, My spouse had his kidney transplant Nov2018 and he was diabetic before the transplant taking one insulin at night time and kept his glucose controlled. The first 14 months after his transplant he had a low grade rejection, and recovered from that after 6 days in the hospital, then red blood count way too low for 8 months and 6 months later another added problem, white blood count high due to CMV virus contracted from donor organ. Long story short, he immediately went on taking insulin 4X a day, 2 different kinds and meds were changed often due to other problems and other meds added and removed. For over 18 months he was on 21 meds a day, many 3X a day and over time many were taken away and now 3.5 yrs later he's on 14 meds. The insulin protocol never changed. What I'm getting at as his spouse is this: everyone's body dealing with so many medications is very different. He still feels worse now than he did pre transplant. THe changes I've seen are super super slow in the positive range. There are so many things he can no longer do anymore due to how he feels alot of the time . Adding covid19 to the mix has added another issue we both live with since his transplant problems and then covid arriving called "Isolation" away from friends indoors. WE have yet to live "normal". I sincerely hope you talk to your doctors and see if they can get your medications where you feel good, have energy. My spouse blood labs are very good, but how he feels don't match them and his doctors focus more on the labs and are hesitant to alter anything due to the first 14 mos were so volatile. I wish you the best.

[Transplant314]

I am three years out from my transplant. The adjustment to the meds and transplant took six months before I began to feel some sense of healthiness. I have not had the extremes you have had but tiredness, fogginess, achy joints are something I have accepted as better than the alternative.

My nephrologist will not confirm that the meds could be the cause but what I read on this forum and on the internet confirms that it is not in my head.

I appreciate everyone’s support and information that we all share here.

[WYOAnne NKF Ambassador]

The main thing is to keep your medical team in the loop. They need to know the problems that you are having so they can help.I am almost 23 years post-transplant. I had problems those first 18 months. While working with my transplant team they lowered my dose several times. I had some bad issues with diarrhea. We discovered that my body did not like generic of my immunosuppressants. Seems that the generics are just a little different from the name brand. By the docs working with me we were able to get this all settled and I did fine after. I take Neoral, name brand cyclosporine and Myfortic, name brand for cellcept. Now my nephrologist writes a letter to my mail order pharmacy so that I do not get generics of my drugs.

Just know that it does take awhile for not only your body get adjusted to these new meds, but also for the doctors to figure out the right dose for you. I believe they start everyone on the same dose right after transplant.

Best of luck !

[gardengirl97301]

It’s been almost 3 years since my transplant. I had horrible shakiness. I had trouble writing and dropped a lot of stuff. I did get to reduce my Tacralimus by one capsule a day. That helped. I started taking CBD oil and the shakiness is so much better, but I can’t say for sure if it is the CBD oil that has helped. Otherwise I’ve done really well. Feel good and have good energy.