tacrolimus

[Sunchip]

do the side effects of tacrolimus eventually get better with time ?

[Herewegoagain12]

Hi Sunchip. How long since transplant?

[Sunchip in reply to Herewegoagain12]

Hi, in the process of getting transplant. Been reading a lot about side effects from the tacrolimus and it worries me a bit. Im pretty sure thats the drug they are going to use.

[Seanthesheep in reply to Sunchip]

Hi Sunchip.I am 4 years post transplant. I have never had any significant side effects. Perhaps

I have been lucky. A transplant for me was the most wonderful gift. It gave me my life back after a bad three years on dialysis. My advice is to go with the flow. Don't try to anticipate problems. The surgery is not that bad and recovery is a short journey. Good luck and keep smiling. Sean

[Sunchip in reply to Seanthesheep]

Thank you for your response

[Porter20 in reply to Sunchip]

Same as above for me he said it well!!

Stay positive!

[TeacherMommy]

I was terrified of the whole process before transplant. I wanted information but the information made me think a lot of “what ifs.” My heart goes out to you in the weeks/months/years of preparation and waiting.

I am about to reach 2 years post transplant. The tacrolimus side effects have lessened for me over time. I don’t notice most side effects at all now.

Wishing you smooth sailing!

[Sunchip in reply to TeacherMommy]

Thank you for your response

[Porter20 in reply to Sunchip]

I also had a few tremors at first and now side effects are minimal to none most days. No tremors now that only lasted a week or so after starting the meds.

[Bunkin]

I did the same thing in the beginning! Wondered about the side effects. I finally just put tvat out of my mind and focused on the miracle that I was receiving a kidney! Plus every one is different. I haven’t had almost any of the side effects others have but I have had my very own! I just roll along. It’s a mindset tvat you can do it! Prayers that you have a great outcome!

[Sunchip in reply to Bunkin]

Thank you for your response

[Eyak1971]

Tacrolimus is somewhat toxic to your nervous system. For me it was hand shaking. But lessens as prescription lessens. Sometimes you may take other medications for high uric acid or eye drops that contain BAK which are somewhat toxic that may escalate neuropathy. So always clear medication with kidney team.

[Sunchip in reply to Eyak1971]

Thank you for your response.

[GardnerADK]

Hi Sunchip, for my spouse with his transplant taking this drug, the side effects have worsened since being on Tac almost 6 yrs especially with mood swings, shaking entire body/tremors, depression, and glucose irratic (he is diabetic). For him the side effects of drugs have been huge and he has yet to feel good for a full day. Just being honest here. He felt better before the transplant with GFR 13%. I now know some people have issues with meds. The donated transplant functions well though, but there is no improvement in lifestyle for him/us.

[Sunchip in reply to GardnerADK]

Thank you for your response.

[Porter20 in reply to GardnerADK]

There are so many drug alternatives. I would try a new clinic if they are not addressing his issues.

[GardnerADK in reply to Porter20]

My spouse sees 2 different nephrology clinics already. A 3rd one is 3 hours away. THanks for caring to respond though.

[Lady1984]

hello just to say i didn’t notice anything apart from weight gain and the hand shaking which i still have .. i am on a very strict diet 90% of the time i cook my food at home but i do eat out but only it places that i know prepares their food well .. can i ask what side effects are u worries about

[Sunchip in reply to Lady1984]

thank you for your response. Have not taken the medication yet. In the process of getting a transplant and was just looking at the side effects in general about the drug and it looked like a lot of them. So just fishing around to see what people are going through.

[Tankjsl]

hi Sunchip- wishing you all the best!

I think my only side effects have been some shaking, which are mild, weight gain, which is annoying and some G.I. issues. My G.I. doctor just has me taking Imodium each day and that has settled things down quite a bit.

Being able to live life to the fullest again, I can put up with a few side effects and would encourage you to not worry about those. Hopefully your Transplant team will be supportive and help you through any issues that may develop.

Hopefully you can find the joy in life again. thoughts and prayers are with you.

[Sunchip in reply to Tankjsl]

Thank you for your response.

[Pjpanning]

Hi Sunchip

I am one of those people that has had some side effects from I think the Tacro. I am at 10 months and the headaches, and tremors have gotten worse over time. They are now in the process of switching me to Belatacept. They say very few side effects with that drug. I guess I will see. I am excited to get rid of the tremors.

Don’t get me wrong, I feel great. Couldn’t be happier with the transplant, and my care team says I don’t need to put up with those side effects, as there are definitely times, that they are impacting my life.

But rest assured, I know people that have no or very few side effects - hopefully you will be one of those people. Don’t be afraid to speak up, I’m sure your care team will try to make your life as good as possible.

Best of luck to you.

[Sunchip in reply to Pjpanning]

Thank you for your response.

[LeslieK]

Hello, the initial side effects have lessened. I had stomach probs at first and itching sensations. Hair loss is real. I have some others now like tingling but nothing that isn’t manageable. It is strong and I do feel when my level fluctuates. I’ve been on the same dose for 15 mths. And I started lower 6-8 and should be 4-6 now which would help but I’m still at 7ish. OSU didn’t want the change it bc they say I’m tolerating the dosing.

Hope you do well with the medication. Everyone is so different.

[Sunchip in reply to LeslieK]

Thank you for your response.

[LeslieK]

Also, great post topic! I have so many questions about Tacro for other people not just the pharmacy team. I’d love to read more responses.

[Merlin_Way]

I've had chronic foot pain (ache, burn, tingles) after the transplant. I had neuropathy prior, but it's much worse now, and I suspect the tacrolimus is to blame. But I'm unsure, and I wouldn't dread pills you've yet to even try. Each person is different.

[Sunchip in reply to Merlin_Way]

Thank you for your response.

[ShyeLoverDoctor]

I started out with mild side effects. They had to raise my dose to get my blood level high. And raise it more. They did genetic testing and guess what I an a rapid metabolizer of drugs that use the CYP450 gene (or whatever it is) so I was requiring massive doses. I became toxic, couldn’t remember what I’d been talking about, dizzy, horrible. After week 3 they said OK, we better put you on something else. So they did. So sometimes side effects improve. Sometimes you have to get really sick until they figure out that drug is not right for you.

THe medication dance NEVER stops.

But it beats dialysis any day of the week. Once you have kidney failure and go on dialysis, your life has become shortened. That all changes when you get a transplant.

[wheezoids21]

Usually, if you are getting major side effects then it is because the dosage is too high. This is what my dr. advised and I have found it to be pretty accurate.