@mtn_lvr, I know how you feel by being told that.." try to live with it." I was once told that and I as very angry. But... eventually the side effects went away - or I got used to them. Youes sound more bothersome than mine were.
Since we last spoke here, I was given the OK to continue my lowered tacrolimus dose because the my labs supported the change.
I’ve been told it’s the Tacrolimus. My shaking got worse after I had covid about a month ago. Trying to decide if i want to move from Tacrolimus or stick it out since it helps me to keep my kidney. My nephrologist said I have to keep in mind, a possible rejection by changing the Tacrolimus to something else.
Rosemary, Volunteer Mentor | @rosemarya | Oct 4, 2023
@kidney09,
I am sorry to hear that you are currently affected by increased level of shakiness (tremors).
You have mentioned a very recent, 1 month Covid recovery, and you are attributing the shakiness to the Covid. I am wondering whether one month is still too early to expect your body to be fully back to normal in its response to the Tacrolimus. With so many unknowns about effects of Covid, I imagine that your nephrologist is not able to suggest a time frame until you feel better.
I find that a 2nd cup of coffee increases my shakiness. Is the shakiness constant? or for an interval after you take your dose of Tacrolimus? How often are you having labs and Tacrolimus Level checked?
I’ve been told it’s the Tacrolimus. My shaking got worse after I had covid about a month ago. Trying to decide if i want to move from Tacrolimus or stick it out since it helps me to keep my kidney. My nephrologist said I have to keep in mind, a possible rejection by changing the Tacrolimus to something else.
@kidney09, I want to drop in for a short visit since last time I heard from you, you were trying to make a decision related to your Tacrolimus and increased shaking. I do hope that you are feeling better.
Have you found any relief? Have you made a decision about a medication change?
@kidney09, I want to drop in for a short visit since last time I heard from you, you were trying to make a decision related to your Tacrolimus and increased shaking. I do hope that you are feeling better.
Have you found any relief? Have you made a decision about a medication change?
Hi @rosemarya. Thank you for checking on me. 🙂 I've been to a neurologist (at Mayo) and he feels the additional shaking is due to covid (which I contracted the end of August) and the tacro, which has always made me shake. I was vaccine injured the end of 2021 and part of that is symptoms becoming worse when I get anxious. Right now the shaking isn't too bad. Manageable.
@rosemarya forgot to answer your lab question. As follow up post covid, I've been to Mayo twice now 2 weeks apart so they could check to be certain I had no issues post covid. Creatinine went up but is slowly coming down. Tacro level at last lab was low so I'm getting another lab next week to check the level again. I see my regular nephrolgist the 1st of November so it will be checked again then as well.
Hi @rosemarya. Thank you for checking on me. 🙂 I've been to a neurologist (at Mayo) and he feels the additional shaking is due to covid (which I contracted the end of August) and the tacro, which has always made me shake. I was vaccine injured the end of 2021 and part of that is symptoms becoming worse when I get anxious. Right now the shaking isn't too bad. Manageable.
Hi...hope I'm not intruding but I too shake...well, not really a shake, but a tremor. It's my right hand and not really too noticeable except at certain times, especially if I'm nervous or run down. (I'm a lefty, so it doesn't interfere with writing or things like that. I'm 18+ years post transplant but in my case, the Mayo neurologist discovered it was caused by the fact I take Depakote to control seizure after I had a grand mal 19 years ago. It was then that the neurologist called to the ER discovered I had ESRD and the build-up of toxins caused the seizure. I was started on dialysis and given Depakote to control the seizures. (Transplant the following year). Never had another seizure but Depakote can have a side effect of tremors. So in my case, it's not my immunosuppressant meds or Covid (which I had 2 years ago) but this "anti-shake" med that causes my shake. Anyway, glad to hear you seem to be coping and have a good attitude. Cheers!
@postaljax, I want to Welcome you to the Transplant Support Group. I know that you feel better with the Cellcept adjustment! I have only needed my Tacrolimus adjusted occasionally with tremors, concentration and elevated Tacrolimus test results. My Cellcept is checked at my annual appointment. I'm curious - Might I ask how the transplant team knew it was the Cellcept that was causing the tremors?
I see from you profile that you are a lung transplant recipient. If you are comfortable to do so, Would you tell us a little about yourself and your lung transplant.
I have the tremors in my hands sometimes, but what really bothers me is the whole body shakes that I get after bouts of dizziness. They only last about a minute and then subside. However, I have spilled things and broke things (such as a bottle of hot sauce due to the shakes). Does anyone else experience them?
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@mtn_lvr, I know how you feel by being told that.." try to live with it." I was once told that and I as very angry. But... eventually the side effects went away - or I got used to them. Youes sound more bothersome than mine were.
Since we last spoke here, I was given the OK to continue my lowered tacrolimus dose because the my labs supported the change.
Here is an article that was posted in the Transplant Pages Blog
- Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
.
I really hope that you find relief. Please keep us updated.
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1 ReactionI’ve been told it’s the Tacrolimus. My shaking got worse after I had covid about a month ago. Trying to decide if i want to move from Tacrolimus or stick it out since it helps me to keep my kidney. My nephrologist said I have to keep in mind, a possible rejection by changing the Tacrolimus to something else.
@kidney09,
I am sorry to hear that you are currently affected by increased level of shakiness (tremors).
You have mentioned a very recent, 1 month Covid recovery, and you are attributing the shakiness to the Covid. I am wondering whether one month is still too early to expect your body to be fully back to normal in its response to the Tacrolimus. With so many unknowns about effects of Covid, I imagine that your nephrologist is not able to suggest a time frame until you feel better.
I find that a 2nd cup of coffee increases my shakiness. Is the shakiness constant? or for an interval after you take your dose of Tacrolimus? How often are you having labs and Tacrolimus Level checked?
I want to share this group discussion with you:
- Tremors post kidney transplant
https://connect.mayoclinic.org/discussion/tremors-post-kidney-transplant/
,
@kidney09, I want to drop in for a short visit since last time I heard from you, you were trying to make a decision related to your Tacrolimus and increased shaking. I do hope that you are feeling better.
Have you found any relief? Have you made a decision about a medication change?
Hi @rosemarya. Thank you for checking on me. 🙂 I've been to a neurologist (at Mayo) and he feels the additional shaking is due to covid (which I contracted the end of August) and the tacro, which has always made me shake. I was vaccine injured the end of 2021 and part of that is symptoms becoming worse when I get anxious. Right now the shaking isn't too bad. Manageable.
-
Like -
Helpful -
Hug
3 Reactions@rosemarya forgot to answer your lab question. As follow up post covid, I've been to Mayo twice now 2 weeks apart so they could check to be certain I had no issues post covid. Creatinine went up but is slowly coming down. Tacro level at last lab was low so I'm getting another lab next week to check the level again. I see my regular nephrolgist the 1st of November so it will be checked again then as well.
-
Like -
Helpful -
Hug
1 ReactionHi...hope I'm not intruding but I too shake...well, not really a shake, but a tremor. It's my right hand and not really too noticeable except at certain times, especially if I'm nervous or run down. (I'm a lefty, so it doesn't interfere with writing or things like that. I'm 18+ years post transplant but in my case, the Mayo neurologist discovered it was caused by the fact I take Depakote to control seizure after I had a grand mal 19 years ago. It was then that the neurologist called to the ER discovered I had ESRD and the build-up of toxins caused the seizure. I was started on dialysis and given Depakote to control the seizures. (Transplant the following year). Never had another seizure but Depakote can have a side effect of tremors. So in my case, it's not my immunosuppressant meds or Covid (which I had 2 years ago) but this "anti-shake" med that causes my shake. Anyway, glad to hear you seem to be coping and have a good attitude. Cheers!
-
Like -
Helpful -
Hug
1 ReactionCellcept was the culprit for me but when adjusted it disappeared.
-
Like -
Helpful -
Hug
1 Reaction@postaljax, I want to Welcome you to the Transplant Support Group. I know that you feel better with the Cellcept adjustment! I have only needed my Tacrolimus adjusted occasionally with tremors, concentration and elevated Tacrolimus test results. My Cellcept is checked at my annual appointment. I'm curious - Might I ask how the transplant team knew it was the Cellcept that was causing the tremors?
I see from you profile that you are a lung transplant recipient. If you are comfortable to do so, Would you tell us a little about yourself and your lung transplant.
I have the tremors in my hands sometimes, but what really bothers me is the whole body shakes that I get after bouts of dizziness. They only last about a minute and then subside. However, I have spilled things and broke things (such as a bottle of hot sauce due to the shakes). Does anyone else experience them?