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Tacrolimous and Cyclosporine

Hi everyone. My transplant was on June 7th 2015. I recieved a new liver. One of the medication I was put on was Tacrolimous. I have felt pain in my legs since my transplant and the doctors couldn't figure out why I was having all this pain. It started from my feet then worked it's way up. In 2 years it creeped up to my waist line. They finally figured out it was the Tacs that were causing it. So they changed my meds to Cyclosporine. That just adied to the side effects like swollen bleeding gums, bad headaches and upset stomach. I couldn't take the extra pain so I asked to switch back to the Tacs.Does anyone else have any problems with these meds?

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  • Hi Rhoda, I'm 6 mo post-op with new lungs. My worst prograf side effects are feeling loopy and confused, especially when I'm up and moving around, in addition to tremors mostly in my hands. I'm trying to roll with the punches as I move further down the road in my recovery. I just made the mistake of doing my own research on prograf side effects online and am now convinced I have at least four other conditions, each of them to bring me to certain death. #JK #TransplantHumor
    • Im happy you recieved your new lungs. Its a blessing.
      I have gone through the confusion and loopy feeling in the beginning. I also gained so much weight and tiny bumps all over my face that I dreaded the most really.
      It goes away though.
      The trembling hands I still have but not as bad as before. It seems when I get excited like telling an exciting story my adrenaline jacks right up and I am trembling all over my body and I don't stop for quite a while.
      I hoped that would have gone away but it's still with me but I am just glad it doesn't happen all the time.
      Lol googling symptoms is one thing my transplant doctors tell me not to do lol..
      Hope all is well other wise. Take care
  • Kidney TX March2017.
    Tingling, numbness, tightness, burning & pain--- Both feet.
    Tacrolimus (Envarsus the extended release). 4 mg per day
    • Wow everyone seems to have the same symptoms and so much pain. I'm sorry you are feeling this. I have had this for 2 years from the waist down and pain keeps creeping up further up. It started from my feet. Then it reached just above my waist in 2 years after transplant. I take 6 mg Tacrolimous a day.
      I tried the other anti rejection meds and that was so much worse.
      The only thinh that helps me is massages and pain meds prescribed by my doctor. I take Gabapantin for the nerve pain and Dilauded for the physical pain.
      Most doctors won't give them to a transplant recipient but my pain has sky rocketed. So they give me pain meds and those don't work.
      I pray you can get the help you need for your pain.
      (Taking baths make my pain so much worse)
  • cyciososporine can be a beast mt friend was on it coul not tolerate at all.put him on after 6 yrs hes kidneys have failed because of the tacro and is on dialyis.seems to me either you can tolerate these drugs or waiting to get changed to adagraf the once a day pill.but iys all tacrolimus but seems all these generics have differances..god bless you rhoda   BILL

    • It seems to affect alot of people. I thought it was just me when I started having these pains.
      I have had my kidney numbers all whacked at the beginning of my transplant and is kinda bothering me again.
      Could be from these pills?
      I think I would rather have the pain I have now with the Tacrolimous than the Cyclosporine pain. Those have me added pain in my mouth head stomach and the already pain from waist down hurt even more.
      I pray for your friend.
      Hope all goes well for you and him
  • we are in same boat.. I have restless legs syndrome after my transplant. hard to sleep at night. I know it's the prograf but my nephro couldn't stop it as it would do worser damage. had to bear with it.. please share how you control the pain..
    • I'm sorry you have to go through that. Honestly I have to suffer through it most of the time. The pain is so bad that when I take Gabapantin for the nerve pain and Dilauded for the physical pain I can still feel most of the pain. So I figured since I am going to still suffer through it I should take the 600mg Gabapantin and 4 mg dilauded only when I desperately need it.
      My transplant specialists were so against me taking anything for pain until I talked to my Psychiatrist who I started seeing specifically for the pain and she recommended the pain meds and I did have some pain meds from before and she noted that I take them every so often and not taking them every day so she mentioned to the transplant specialists that I know how to limit my pain meds intake and should be trusted with them so they started to prescribe the pain meds. That takes a little pain off but doesn't take the whole pain away.
      I hope you can start feeling better.
      • My problem really having this restless legs is the difficulty in sleeping at night. it's really an uphill drive for me. I need to sleep as I'm already tired but just couldn't because the pain is bugging me. the pain is bearable but it steals our focus to have a good night sleep.. even during the day. all I wanted is a full night sleep.. by the way, are you hands shaking too?
        • I feel ya. I have restless leg too also have difficulty keeping my hands still I always have to tap the table or the door when I am driving.
          Because I am always in pain I am always staying home and when I do go out I get so anxious around people because when I was sick with PBC I used to get bumped into alot and that would set off my pain so I didn't like being around alot of people. Also claustrophobic so when it gets too crowded I get dizzy.
          I used to be very social but now I am always just around my kids or spouse.
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