Liver
Does anyone else experience Tacrolimus tremors?
November 22, 2020
in Liver
I suffered from them very badly post-transplant, to the point that even my vocal chords were tremoring. My transplant team switched me to Envarsus (extended release tacrolimus), along with putting me on propanolol which have both helped. However, I still experience some tremors, and have noticed that they get worse when bloodwork shows that my tacro level is higher. Luckily it hasn't negatively effected me too much, besides my handwriting looking a little shakier, other people noticing and asking about it, and struggling with applying mascara and eyeliner without getting it all over my face :)
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Hi there Meghan, I have had on and off tremors/shaking in my hands, and occasionally other types of tremors. I've been told it's tac related. I've been taking Tac since this transplant.
Transplant Patient
I have them when my FK levels are around 10 which they should not be - means my levels are too high and the side effects take over! Hate them since it is hard to drink coffee or even a glass of water
Yes, I've found my hands really shake whenever I am eating or drinking. I'm also definitely not the go-to person to snap photos anymore - they turn out blurry from the shaking!
Transplant Patient
I have the worst tacro shakes! I've dropped so many dishes because my hands are shaking, i frequently miss my mouth when trying to eat or drink, my hand writing is very shaky now, photos are blurry, eyeliner is never even. I experience the worst tremors in my hands and also my legs. i'll be standing normally, a leg tremor hits and all of a sudden i just fall over or walk directly into a wall or something
It can definitely be pretty bad! I've given up on eyeliner and my handwriting is definitely much worse. I once got very bad leg tremors while driving - that was a little scary! Turned out that my tacro levels were extremely high.
Did you ever discuss with your docs @meghansmith and @AliEm14 if your levels are too high? I know that when I had tremors it turned out that my levels could be brought down and my dosage adjusted. Maybe @Karin has something to weigh in about this? I have also been on brand and then generic, and I noticed some differences.
Transplant Patient
Yes! But my worst issue right now is the nausea and headache I wake up w (or by). Horrible!
@Karin do you know if those are from the tac? (your headache and nausea)? I had nausea in the past but from a different transplant drug
I have; when they were really bad they decided to make the switch from regular tacro to envarsus (extended release) and that helped some, as well as adding propanolol to my medication list to try to combat the tremors as well. I do agree though that they are definitely worse when my levels are too high. I still get bloodwork weekly so my numbers are being checked very regularly.
I have Tacrolimus Tremors. I am 27 years old and 1 and a half years post-transplant. While my shaking is minimal, there are times where it frightened me at first. I wasn't made especially aware of them, and my mind when crazy as to what it could be. My most recent struggle was when I was trying to make a poster in support of a friend's marathon run. That handwritten poster was SO BAD!!
I also have inconsistent pins and needles and my hands and feet have trouble gauging whether water is hot or cold.
Hi Michael, Yes! I also suffer from some peripheral neuropathy with the tingling/numb/sensitive to temperature hands and feet.
Transplant Patient
@meghansmith @MichaelGrahamHuff did the tingling happen post transplant?
@Karin for me, yes - I would mildly experience it pre-transplant but nowhere as strong or as often as it is now.
Definitely have the Tac shakes! Frustrating for handwriting and eyeliner. Its also woerd becayse ve had people stop meetings to ask me if I'm okay. Everyone at work knows I'm post transplant, but they treat me with Kid gloves now more than before lol.
I also have bad tacrolimus shakes. Mine has gotten so bad over the years I’m on a medication to help calm them down.
I don't think I have shakes much anymore. I do like a good milk shake! lol, sorry. I make dad jokes even though I'm not a dad.
@Karin
I used to have tac tremors in the beginning, but at the time I had hoped to be a transplant surgeon. So, they worked really hard on getting rid of my tremors.
This is kind of scary, to me. This is not something I know anything about, as I was just put on the transplant list. I have so many questions. Is this common, is there something that I should bring up with my team ahead of time? Is this just a "you have to deal with it" symptom, or is this something that is a priority to manage?
Transplant Patient
@TServold maybe others can shed more light but for me it’s just kind of this annoying thing I deal with. As others have said, it’s worse when your levels are too high. It is common, and for me I notice it more in my legs and hands. From what I’ve heard most people experience it, and if it is something that gets really bad you can talk to your team but in my experience my team said to me the benefits outweigh the annoying side effects and unless it gets to the point where I’m unable to function I just have to live with it.
@TServold I agree with @AliEm14, it’s fairly common and not something you should worry much about! It’s definitely worse when your tacro levels are higher (over time your tacro dose will decrease and a lower tacro level will become your “stable” area). There are some medications you can take to try to ease the symptoms (I take propanolol) but it’s not something I would let concern you pre-transplant. It doesn’t happen to everyone (I have very low blood pressure and would sometimes shake pre-transplant so I’m sure that plays a factor too!) and if you do end up experiencing it, know that it’s normal! It really doesn’t effect my everyday life much, usually just something I laugh at 😊
Transplant Patient
@TServold it is def manageable! When my tac levels are below 8-10, I don’t have tremor at all!!
I logged in today to find this discussion I remembered it from when I first joined TransplantLyfe. Recently I have noticed nerve pain in my feet. I had a little bit before surgery but never anything I felt the need to treat. Now, its waking me up at night. Also in the past week or so I have noticed some tremors in my hands. A couple of times my husband has asked if I am okay when washing dishes at night; when applying lipstick I have to pause and concentrate on my hands and when eating soup I've lost the spoonful of soup. My last tac level was 10, which was a little higher than it has been. They want it at 8-10 right now.
At any rate the whole point of me commenting was to say thanks everyone for sharing. It helping me today. :)
I didn't ever notice tremurs in Timmy. But he gets headaches a lot. Especially if he isn't hungry for breakfast when it's tacro time and then heads off to school where he doesn't drink enough water.
Transplant Patient
I’m so glad you brought this up @TServold
i forgot I used to have such bad tremors! They changed me to long acting tacro about a year post transplant, and my side effects have reduced dramatically since then. My tremors aren’t nearly as bad as they were!
This is such a great thread. I had really bad tremors and headaches with tacro and switched to Envarsus. My symptoms have gotten much better
I am actively in the process of stopping Tac all together and going on a new drug that is not from the same family due to the tremors- I was already switched over to the long acting tac and still the tremors persisted so now it’s plan C. Hopefully this works and I don’t develop a new side effect
Transplant Patient
keep us posted! I love that you're moving to plan C, and finding something that really works for you. Best of luck
Transplant Patient
I definitely experienced major tremors, pre & post transplant due to the meds. It was really difficult to eat &to do anything involving my hands!
Post transplant, it probably lasted for a few months. Currently (& for the last 6+ years) my Tacro dosage is 0.5 mg × 2 daily. Luckily, no more tremors.
Thanks @AliEm14 I’m also very happily I have a team that always has a plan! And we will go all the way to plan Z if we have to because “what’s a new life worth of you can’t enjoy it” as my amazing dr has said!
so far the swap is tricky and a longer process than I had expected but I start the sirolimus has been ordered and I start March 8th- I’m back on 2x a week labs for the next 24 weeks however 🙃 so that’s going to be fun.
I didn't think I had them, then my doc had me hold out my hand and it was shaking. My niece loves to play me in Operation!