Kidney Transplant plus Parkinson’s

Welcome @geck. I added your question to the Parkinson's Disease group too (https://connect.mayoclinic.org/group/parkinsons-disease/). In the PD group, you'll be sure to meet @hopeful33250. While she hasn't had a kidney transplant, she manages both Parkinson's and living with neuroendocrine cancer. She is no stranger to dealing with medications for multiple conditions.

Geck, which medications are you finding challenging? Are there transplant meds that are contraindicated for Parkinson's?

Can’t seem to find the right Carbodopa/Levodopa dosage or how often to take them.

Hi @geck 😊
Do you have a neurologist that is monitoring your Parkinson's for you? Have you made an appointment to revisit your meds?
I know you said that your transplant team has tried to adjust or change your immune suppression meds to help lessen some of the adverse effects. I think you said, one change was from Tacronlimis to Cyclosporine. Maybe you should share all your current meds and dosages for the Transplant Group. Sometimes someone recognizes a med/dosage and a side effect that you are unaware of. (Also, when meds are combined with others, they can behave differently).
Please include what are your current symptoms that are troubling you? How are you feeling today?
Between both connect groups reading your post, you may have someone that is experiencing the same symptoms and can share their solution!

Hello @geck, I'd like to join @colleenyoung in welcoming you to Connect. I'm really sorry to hear about the problem you are having with the meds for the Parkinson's disorder. It can be difficult finding the best meds even without having to consider the transplant meds.

I agree with @hello1234 that your Parkinson's should be monitored by a neurologist, but I would suggest it be a Movement Disorder specialist. This type of neurologist is trained for movement disorders such as Parkinson's. Are you currently seeing a Movement Disorder specialist? This type of specialist can be found at major hospital systems. If you are not currently seeing a specialist of this type, please seek one.

Regarding the timing and dosage of Carbidopa/Levodopa (C/L), what problems are you having? Does it wear off too soon? If it is wearing off too soon you might ask your doctor about adding Entacapone. This is a med helps the C/L stay in the brain longer. As your medical problems are complex, your medical team would need to decide if this is a safe combination of drugs.

If you don't mind sharing more, what symptoms led to your Parkinson's diagnosis?

I am currently seeing a movement disorder specialist who only works 2 days/week so if I have agitation. jitters, etc. she is hard to reach. Right now my next appt is Dec 1 and I am taking 1/2 tab of 25/100 and 1/2 tab of 50/200 ER at 8:00, 11:00, 4:00 and 8:00. I seem to start shaking an hour before my next dose. I started to get a shaky foot about nine months prior to transplant and saw a few neurologists who said it’s from anxiety, then essential tremor, then Parkinson’s then Parkinsonism, then I am not sure it’s Parkinson’s to yes it is! What a roller coaster ride and adjusting of meds. Haven’t found the right meds or how often and its been since Feb of 2021.

I have Parkinson’s disease and transplanted kidney I got in May 2019. Kidney works well so far, Parkinson’s is managed well. However, I developed severe GI problems (bloating , pain, constipation, etc.) and lost 40% of my body weight as of today. Also, it seems that I developed sensitivity to carbidopa-levodopa in such way that when it touches my skin-the skin peels off, touches eye - the eye gets inflamed. Anybody got same problems?

Hi @jonwan84, I want to welcome you to the Transplants support group. Good to hear that the kidney is working well. And that your Parkinson's is well managed.

You may also be interested in following the discussions in this related support group:
- Parkinson's Disease Support Group https://connect.mayoclinic.org/group/parkinsons-disease/

Here are some discussions regarding transplant and GI issues:
- Mycophenolate or Myfortic: Do you have GI side effects?
https://connect.mayoclinic.org/discussion/mycophelonate-and-side-effects/
- Side effects of kidney transplant meds
https://connect.mayoclinic.org/discussion/side-effects-of-kidney-transplant-meds/

I'm tagging @geck and @hopeful33250 to see if they have experienced any of the sensitivities to carbidopa-levodopa as you have.

@jonwan84, have your doctors adjusted any of your medications to help with these side effects? Anything working for you yet?

Hello @jonwan84,

I'd like to join Colleen, @colleenyoung, in welcoming you to Mayo Connect. As you may know, digestive tract problems, especially constipation, are typical problems that many Parkinson's patients experience.

The skin and eye inflammation, however, are not something that I have heard of previously. I would urge you to contact your transplant team as well as your neurologist.

After talking with your transplant team, a visit to a dermatologist to check out the skin problem as well as an ophthalmologist visit regarding the eye inflammation would be warranted. While the skin and eye problem may be related to the Parkinson's medication (or the transplant medications), it might also be another disorder that can be treated by one of these specialists.

I look forward to hearing from you again. Will you post as you have more questions and also as you find more answers?