Tremors post kidney transplant

@mollyv Hi Molly, I haven’t had a liver transplant but I’m on tacrolimus for my bone marrow transplant. My tacro level stays fairly even unless there is a change in doses of other medications. There are certain meds which can interfere with the absorption and even with the retention of tacro in our systems.

Have you changed medications during any of the spike periods? What does your doctor say about the rise in levels?

It’s great you don’t have the tremors anymore. Since my level has been taken down a notch I’ve ceased to have those too. But the slight tremors did have a rather fun effect on my artwork though. Gave it a wonky quality. LOL.

Athenalee, Wow! A phone call and a conversation with this specialist is fantastic. This guy certainly is demonstrating top medical interest in your situation. I am overjoyed that you have made a connection and that you can can feel a glimmer of hope about managing the Sjogren's.

Can you get those labs and observations locally? How will you proceed from here?

I am on Tacrolimus. The one time my liver enzymes spiked was when I took a homeopathic sinus remedy...and, my doctor was very upset! I can’t tell you why your Tacrolimus dose has been modified over the years. However, I’m now 8 months out from my liver transplant and my dose has been reduced from 8mg/day to 6 mg/day; my Mycophenolate has been doubled to 2,000 mg/day. But there are less side effects with it.

For several months now I’ve taken my meds at 8 am before I eat and wait at least an hour before eating. I take my meds at 8 pm at least 2 hours after finishing supper. I’ve read that Tacrolimus is far better metabolized on an empty stomach and consistency is important. Also, I take no supplements, herbal or prescription remedies without approval from my nurse. There are more than 700 foods, herbal interactions, meds, that can increase or inhibit the metabolism of Tacrolimus in your body. I also consult Drugs.com to check. The dose of Tacrolimus we take is based on how much is in your system when you take it, and of course your monitored enzymes. At least that’s for liver transplant folks.

Apologies, if you’re already aware of these interactions, but I wasn’t informed of how many there are until I researched. This is a good article, it’s about Cyclosporine, but it’s the same for Tacrolimus -
https://www.hindawi.com/journals/jt/2014/145325/

Thanks for responding. I don’t take anything without my doctors permission, and avoid all the usual things like grapefruit, etc. It’s just so puzzling to me. I’ve asked my team and they just kind of shrug it off. I guess they don’t know either!

Sounds like you’re doing the right thing. With all my ongoing issues, lots of tests, and few solutions, I just keep eating well and walking/exercising. And, I’ve just decided bodies can be very weird and certainly challenging. I hope you find a solution soon!

Agreed. He certainly boosted some of my lost faith in medical providers. I can’t get the tests done locally, but he thought I could get them at Dartmouth Hitchcock in Lebanon, NH. So just 2 hours from me. I’m also going to ask my liver doctors at Lahey. The trouble will be getting insurance to cover out of state.

It takes many weeks just to see a specialist which is so frustrating, as my symptoms have come on so fast. So, unfortunately that’s the first step. Ill just keep researching and remain hopeful!

I had kidney transplant 3 years ago. I’ve recently had my Tac start to rise. I think Mine may be from adjustment on how I take my meds. I take them one hour before I eat and don’t eat anything for two hours after. Before I was taking them right before I ate. I was constantly dealing with upset stomach. That’s completely gone away. I retest again next week to see if there will be adjustment. Do you take meds and eat meals the same way everyday for absorbing meds?

Yes. I researched the best ways to take Tacrolimus to get the best results, which is on an empty stomach. So, for me, it works to take it at 8 am, before eating and wait until at least 9 to eat. Then, I do my best to eat supper by 5 pm, so I’m done eating by 6 to allow 2 hours before evening meds. And, of course, I drink at least one glass of water when taking the meds.

Reason for tremors after kidney transplant even after stopping tacrolimus due to tac toxicity

@ckd1198, Welcome to Connect.
I am a liver and kidney transplant recipient and I have been taking Tacrolimus/Prograf since my transplant in 2009. I did experience tremors during my early treatment, but as the dosage was adjusted and my labs and tacrolimus trough level became stable, I only experience them occasionally. My labs are drawn on a routine schedule and my transplant team at Mayo Rochester monitors my results.
-ckd1198 - What brings you to Connect? Are you waiting for or are you a transplant recipient? Are you experiencing tremors?