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Tremors

I'm new to the forum just wanted to introduce myself. My name is Sammy and I had a kidney transplant in Aug 2015. Due to a genetic disease called Alports, which I was diagnosed as a child.In these past 2 weeks I started to get tremors in my hand. It's not really bad but I'm just worried about it. I had a Blood test done and my creatine is 0.9 and tacro is 7.4I know everyone's body is different but what is the average number supposed to be for the tacrolimus? Thank you in advance and feel free to ask me any questions as well.

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Replies

  • I would first ask why they are keeping your tac levels high. Some stay betweeen 3-6. I would be lower than the 5 which I am stuck with because, when first transplanted, one of the transplant doctors weened me off a med that changes tac levels and did not check , which is protocol. It almost cost me my liver so now I have to stay at 5, which I feel is not necessary as was doing fine at 3. The more tac, the more you may find tremors. I am blessed to have very little. Talk to your team. See if they are willing to adjust.
  • Hi - i had terrible tremors and they said my Prograf was too high. It was 7. They want to keep it between 4-6. I'm now on three mg am and two mg pm. I don't have tremors anymore and feel much better. My transplant was May 2015. Hope this helps.
  • I am almost 10 years post transplant and I still have hand tremors.  Some days worse than others.  Somedays it is not noticeable unless I hold my hands out; other days it can interfere with tasks requiring steady hands, like using a screwdriver.  

    My tacro level was 3.9 last week.  My doctor wants to keep mine in the 3 - 5 range.  Whenever mine gets over 5 the tremors get worse.  Transplant team told me it is something that some never get over.  I could change meds, but I have been problem free and the risk for me outweighs the reward.  

  • Tac level of 7.4 is not "high".  Theraputic levels are usually stated as 5 to 10, so you're about right in range.   That said, mine is only about 4 and I'm only takning 1mg twice a day.

    Your creatine is good!  Be happy!

    Sorry about the tremors.  Some folks do have that challenge. As they lower your tac dose it may improve.    

  • Hi Sammy...

    I, too, have hand tremors but I thought it was before the transplant....after the transplant, I was wild in the hospital with tremors all over my body.  I couldn't stay in bed, I was highly active trying to find relief, mainly from sitting in a chair despite all the tubes hanging around.  I am stablalized once the meds were brought down.  My txp is going on 14 yrs and have only the left hand tremors.   I never thought of Prograf being the culprit though I take so much less now,...

    My most pressing question now is I have just changed Cellcept (Brand) to the generic....I haven't followed up with labs to see where I am yet.  Now I found out the Prograf (Brand) that I take now has a generic but not certain if the results are doing well on patients.  The saving are enormous!!  Tell me what you know, please.

    alese inFL

     

     

    • hey alese , I been on generic pro grah and cellcept for 6 years and I find my numbers are better on the generics , seems I have less tremors  with them as well

  • Hi Sammy, this is Mary. I had my kidney tx Dec. 2014. I started to get tremors in my right hand about a year ago. So it was 1 1/2 years since my tx. Now I have been getting tremors in my right foot. My creative level avg. is 1.2. My dr wants my taco level to be between 4 and 6. however, when they lowered my tacro. Dose. My creatinine dropped to .9 but my tacro. Went to 3.4. So they bumped up my taco. Dose again.
    My tremors are more intense when I get anxious. It drives my crazy when I try to write or put a fork to my mouth. ( although I manage to eat , my scale can attest to that). I know everyone is different. I am older (71) and weigh 145. As you say, There is not a one fits all. I also take , 5 mg of prednisone and 1000 mg of mycrophenolate. Daily.
    I really don't like how any of these meds make me feel. But we do what we have to do.
    Be well my friend,
    Mary
  • Hi Sammy,

    I have to agree with David, Hand tremors are one of the "party favors" that Prograf (Tacrolimus) brings to recipients.  You should speak to your Tx team to be sure your level (FK) is not too high.  I have been taking Tacrolimus for over 15 years and either I got used to the tremors or my body did, I do not notice them anymore  though I remember the tremors were stronger when I was very tired..

    • Yea I think you're right about the tremors getting stronger when I'm tired or anxious. Yea my doctors usually want my tacro between 6 -7.
      Thanks for your reply
  • Hey Sammy, Congrats on your miracle !  old man hand shakes are normal ,  not sure what meds your on,  pro graf  or a generic version of it  is usually the big culprit off hand tremors ,  Tacro levels as you get longer out of tsplnt will get lower as your team will lower your dosages .  June will be 7 years for me post heart  and my tacro level  is normally 5.9  to 6.1  ish  ...  I still once in awhile  get hand tremors ,  keep your team  informed  as to the severity of it ..   hope this helps ..

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