Adoport side effects

Hi, I am 11 weeks post transplant and have been having my dose reduced from 8mg x 2 a day from when I left hospital to 3mg & 2mg a day now as my tacro level has still not come down to the level that is best (8 - 10) as I understand, but I am now having really hot fingers that feel like they are burning most of the time and if I put them in luke warm water it feels scalding to me. Does anyone else suffer similar side effects? Many thanks

9 Replies

  • I did not have hot fingers but Had shaky hands and my memory was crap for some time together with nightmares. Everything got better after a few months when they sorted out my levels so do not worry.

  • Thanks for your reply smashandgrab, I occasionally have the shakes also like the hot hands it comes and goes. A small price to pay I suppose for the life changing benefits of a transplant.

  • Hi stonebroke, I'm in adoport and I can't say I've had those side effects. My advice to you, would be to find the medical information number on the patient information leaflet and call the medical information team of the pharma company, they will be able to advise if anyone on this particular drug has experienced side effects.

    Good luck.

  • Hi Miss A-V-P, thanks for your reply, luckily it seems to be not happening as much as only had it once in the last 2 weeks. I did speak to my consultant about it and he said it would ware off.

  • Hi - sorry to hear of your discomfort. From peoples' comments that I've read it seems that a burning sensation in hands & feet is pretty common. For 6 months or so I had to keep my feet out of the bath because of the burning sensation, although it wasn't as bad as yours sounds. On the upside it's good news your Adoport is coming down so much as it will hopefully improve your energy & general well-being - when mine came down from 3.5 twice a day to 1mg twice a day I felt a whole lot better & creatinine levels went down to their lowest level since my transplant 16 months previously - so hang in there, it's very early days. Warmest, Jez.

  • hi, congratulations on your transplant. i had my transplant oct 2012 and afterwards i was very shaky and my eyesight was really bad, my adaport has just been reduced again to 1 and 1/12 daily. apart from my hair loss i dont have any other side effects. you are in very early days so i would not worry right now. as the dose gets lower you will start to feel fantastic. regards suzanne

  • Thanks again for your replies, I am just over 5 months post transplant now and on 2 and 1.5mg a day, I have only had hot hands once in the last month so things are far better. I am feeling great and look forward to every day when I wake up. good luck to everyone else thanks Stonebroke.

  • Hi, I am 4 months post op kidney recipient and  I am currently experiencing hot fingers,burning legs due to prograf,and experiencing hair loss too, however still on a high dose of  prograf 9mgs per day..I received my kidney via the live paired pool UK, however was not a good match reason for high dose of above meds until things settle down, but not complaining as I'm grateful for my gift of life..

    Can anyone experiencing hair loss advise me if your hair regrows once your prograf reduces? Thank you 

  • My hair did grow back after dose reduced and also the body has to get used to the trauma but thinning hair is a known side effect they do not seem to warn you about. Hope all is going well and you feel better soon. How is your partner in the pair and pooled and where did you have the op?

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