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A symptom of Prograf (tacrolimus) use?

I was just wondering if anyone else who has taken Prograf has experienced a similar situation as I do sometimes when I take a shower. At those times I notice that when my hands touch the water coming out of the showerhead, my hands feel like they are burning under very hot water even if the rest of my body notices that the water is much cooler than what it would seem to be by its effect on my hands. I think my feet may also do the same. It makes it a little more difficult to shower because if I even touch water , it sets off a burning feeling in my hands, and I have long hair to wash. I am trying to figure out what might be the cause of this. If others on Prograf experience this too, it makes it more likely that it is this medication that is the cause although I know that this will not necessarily prove it. I would appreciate any feedback. I wish everyone well, and I hope all blessed with many hugs this week!

Warm regards,
Bobbiejo

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Replies

  • Hi Bobbiejo, I had my kidney transplant 9 years ago and have also been Prograf for that long and get exactly the same side effects with the hot water with my hands and feet, more so with my feet getting into a bath when I have already know the temperature is fine, just one of the side effects unfortunately. All the best.

    James

    • I appreciate you letting me know I am not alone in this. I have started noticing it a little more in my feet recently. I am not worried about it, and I can put up with it easily because I would not be alive without my medicine. I hope you are well and finding life full of blessings. 

      Warm regards,
      Bobbiejo

  • Hi,

    I experienced buring pain on my leg when taking a shower and ignored it, which turned out to be DVTs; I only discovered this after being diagnosed with a pulmonary embolism. This was an extreme case but illustrates why you must tell your transplant team about anything out of the ordinary. I hope this isn't the case with you, probally isn't, but tell your team about it. Stay well - Mark

     

    • Thank you for the warning. I agree that it is important to let my transplant team know of any new symptoms so as to be cautious. I am so sorry that you developed DVTs and a pulmonary embolism as I am sure that can be scary as my mother also experienced the same around one Christmas several years ago, and my family was very concerned for her, but she came out okay thankfully. I hope that you did not develop any problems as a result and that you were able to recover fully. I appreciate your concern, and I hope that you are now well and can enjoy as much good health as possible.

      Warm regards,
      Bobbiejo 

  • Hi Bobbiejo,

    It's hard to blame any one immunosuppressant since they all have many similar and varied side effects. For example: Myfortic - "burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings" (Mayo Clinic). The good thing is that usually, over time, you body either gets used to it or it goes away on it's own. For example, I had the shakes badly with Prograf in the beginning and now after 3 years hardly noticeable. Good Luck! John

    • Thank you for your response. I agree that if one is taking a lot of medications for one's transplant, it can be difficult to tell which one is causing a certain side effect, and a side effect could result from the interaction of the medications as well. However, I am only taking tacrolimus for my immunosuppression, and I have had my transplant for 13 years. My tacrolimus level did rise significantly much earlier this year due to a change in how I got my nutrition. This has been taken care of for several months, but perhaps my body is still sensitive from that. I am glad that your hand trembling has improved. Mine also improved after the transplant, but I have noticed it a little more these past few years. I am not really concerned about the burning symptom I described above, but I was curious if anyone else has experienced the same. I hope all else is well for you and wish you many more years ahead filled with abundant reasons to smile.

      Warm regards,

      Bobbiejo

      • I'm envious if all your taking for immunosppression is tacrolimus. :-)

  • HI I AM 7 MONTHS POST KIDNEY AND LIVER TRANSPLANT  I TAKE PROGRAF MYFORTIC AND PREDNISONE  THE PROGROF MAKES ME SWEAT DURING THE MIDDLE OF THE NIGHT BUT NOT TO BAD  WHEN I TAKE A WARM SHOWER I ALSO FEEL LIKE THE WATER IS BURNING MY BACK AND LEGS BUT NOWHERE ELSE  MAYBE YOU CAN USE GLOVES IN THE SHOWER  GOOD LUCK  CAROL

    • Thank you so much for sharing. It is strange how selective the burning sensation in water can be in regards to where occurs. I am sorry you experience something similar especially as it seems it would be harder to keep those areas out of the water. Thank you for your suggestion. I hope that otherwise you are doing well.

      Warm regards,
      Bobbiejo 

  • I have both pain and numbness in hands and feet post TX.  Tacro could be part of the issue.  I was over medicated with Myfortic and got Shingles which in turn gave me permanent nerve pain which is hard to decipher if Tacro had any involvement in the long run but I did have foot/hand "weird feelings" before I had Shingles but only post Tacro.

    I put nothing past Tacro as I have has a number of odd and continuing side effects.  But keeps me alive and smiling so is what it is.

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