Immunosupressant Drug Side Effects?

[BeachLove]

Hi, I recently made it to the national organ list for a liver and kidney. I am on dialysis. I am interested in knowing what everyone has experienced as side effects on immunosuppressant drugs? These scare me as they could be life long? Thanks!

[LisaSnow]

Congratulations! I am sharing the following discussion thread as it contains a lot of good information on what to expect during this exciting journey.

healthunlocked.com/nkf-kidn...

You may want to consider locking your post by changing the audience to forum members only. This ensures protection of your privacy, and locked posts tend to get more responses (as it affects responders privacy also).

[Sparkles614 in reply to LisaSnow]

Hi Lisa. Could you please tell me how to do this? I can’t seem to figure it out. Thank you.

[LisaSnow in reply to Sparkles614]

First go to your original post, go down to the end of it, click on "more" and click "edit".

Instruction 1

[LisaSnow in reply to Sparkles614]

Then you can scroll down in the editing page. Change option under "Who can see my post?" to "Only Community Members.". Don't forget to Save the edit. Done!

Instruction

[Sparkles614 in reply to LisaSnow]

Thank you, Lisa. I appreciate your help.

[Eyak1971]

Everyone is different to how they will react to certain drugs. Since your doctor's have more information on your medical history check with them. But I applaud you in asking the question since most transplant patients are usually centered on getting the transplant and fail to look at their life afterwards. A transplant is a treatment not a cure. And as a treatment everyone has different responses. However don't stress out. Many others have gone before you and experienced positive responses. Take care.

[WYOAnne NKF Ambassador]

Side effects from your immunosuppressants depends on the person and which drugs you are on. Just know that if you do get any side effects, always bring this to your doctor's attention. They can't help you if they are not aware.When I had my transplant I was put on Prednisone, Myfortic (cellcept) and Neoral (cyclosporine). I had issues with tremors and GI issues. My transplant team worked with me and were able to lower my dose of my meds. For me, they also found that I had more side effects from the generic form of my meds than the name brand, that I am still on today. Don't forget that some of these issues is just your body trying to get adjusted to these meds. By 6 months post transplant, all of my side effects were resolved.

Today I am living well 21+ years post transplant and am side effect free!

[Lifechanger1]

I was on dialysis for 3 months. Had my transplant 6/2/20. I haven’t felt this good in years! BP is a solid 120/80, I’m walking 2 miles per day, have lost 10 pounds in 6 months and all my blood work numbers are in the normal range(haven’t had these blood numbers in years!). Yes I was concerned about immunosuppressants and did experience hand shakes for a number of months after surgery. As of today, I feel no side effects from all my medications I take daily, some 2x a day. Even if I currently had the hand shakes I still am in a better physical place then before surgery. AND, I don’t need dialysis any more. That was very concerning to me, but I had no choice. It will all work out for you. God bless!

[BeachLove in reply to Lifechanger1]

Thank you for the optimism and hopefulness. So glad you are doing well!

[donnabethme]

People take different antirejection medications and some people also take steroids so it depends what you are given and how much. At first you are given more then they are reduced.You can also advocate to try a different one as I did early on.

I am 25 years out from transplant.

I have had skin cancer ( easy to remove).

Other side effects were not as apparent.

I am older so I no longer have to take as much.

My body’s immune system is weaker so less likely to attack my kidney now.

Don’t be scared. It sure beats dialysis!

You will feel well again😊👍

[donnabethme]

PS Good advice from everyone who posted. We are all on the sane page! Best luck

[Atbosag]

I had beyond terrible neurologic itching on Tacrolimus, basically all over my body and nearly 24/7. No dermatoligic medications would help, nor did any oral medicztiins or antihisantihistamines

My doctors switched me to sirolimus, and the result was a great improvement in the itchiness.