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Polyneuropathy attributed to tacromolimus

Hi! 

I'm my husband's caregiver.  He had a double lung transplant in July of 2018.  In April 2019 he started experiencing some numbness in his feet with foot drop.  It is now affecting his legs up to his knees.  Fast forward, the transplant team has taken him off prograf thinking that is the problem.  He has been off for two weeks and his hands are now becoming numb.  He has lost feeling in three fingers on each hand.  Has anyone else had experience with this?  He is in a wheelchair full time now and I'm worried about his losing his ability to use his hands and his ability to walk again.  Our doctors are stumped....

Dolly Helbert

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  • My son is 12 years out from heart lung.  How low a dose of prograf?, generic or brand?  Did his docs test weekly levels to see if he was too high?  Have you seen a neuro familiar with these drugs?  Are you tied into Duke?

    • They have kept a good check on his prograf levels since he has had kidney issues related to the levels as well.  He is on the lowest he could tolerate to keep him out of rejection.  At Duke they use Dr. Reddy Tacromolis only since they have had negative experiences with other off brands.  Yes, on the neuro piece as well. They are working closely with the transplant team.   He has been taken completely off Prograf and is on Everolimus at this point and has been on that for about three weeks.  The excruciating back pain that they could not identify (thought it was associated with a mild disc problem or muscular since he was not able to exercise) is completely gone.  We are thinking it was all prograf related.  He is getting weaker even though he is off prograf.  We are in a "wait and see" if any of his feeling in his legs or hands come back at this point.  It's been three weeks since the prograf was discontinued.  Any suggestions on centers where the neuro department may be better versed in the drug interactions?  We would be open to second opinons and I'm sure Duke would not be opposed since they cannot provide answers at this point other than wait and see.

  • Hi Dolly,

    I wouln't try to guess what is causing issues for your spouse, I will leave a link to a site that has patient reviews of all medications and their side effects. Entertaining reading but a "grain of salt," with some of the reveiws. You may get some ideas though.

    Ask a Patient

    • Thank you.  Did you mean to attach a link?

       

      • Click on "ask a patient " above

        • Thanks.  No one has had symptoms close to his...I guess what he is experiencing is truly rare.

           

  • Wish I could help.

    I am 49, Liver Tx at 45, Heart Tx - worked off of it.  Tacro 2mg BID current.

    I have complete 24/7 brutal pain from Myfortic being added, Shinlges days later now permanent nerve pain.

    A lot of numbness. Not saying normal but we are on some crazy meds to keep us alive and I never underestimate the psossible side effects.

    Not helpfull but sometimes it is what it is.

    Best of luck.

    • I'm afraid that's where we are as well and seems as if different patients have such different experiences.  They are telling us at Duke that they have not seen this in their program before so I assume it's pretty rare.  I just don't want to miss the boat and it be something completely different that we ignore because they are pigeon holing it to the prograf.  I will say his chronic back pain is getting tolerable due to many things being added, one being CBD cream which Duke approved.  It was a miracle for him.  Not sure where your pain is but worth asking your transplant team.  He is at least able to have a life even if it is in a wheelchair where with the pain he was simply miserable.  I hope you get some relief - sounds like you have been through too much to be in chronic pain....

       

      • Oddly I have found Tacro being the culprit of not allowing any pain meds to work lol.  CBD works for GF but I have tried every non narcotic and nothing touches the pain.

        I spend more time on Chronic Pain site giving advice, the mental is pretty tough.  And sounds odd to most of them but I push them to find Gratitude and it will help.  While my Tx saved my life the resulting changes have been crazy.  But again, I would rather manage pain than not have the option.

        My Tx team is zero help and I have seen so many docs, finally have a pain doc who kind of gets it.  Cannot exactly provide any relief but acknowledges my situation - which is the biggest issue for most chronic pain patients.

        Sounds like you both have the right attitude and is really what it takes as it can be mentally draining when you never experience quiet or comfort.

        All the best.

        I keep looking for relief with very tempered expectations.  Get the rest I need, eat how I should, exercise when my body allows and try and smile.  

        • I received a liver TX December 2018 and have had somewhat the same results with very bad pain. I had two bouts with this bad pain - one in March while still weak from the ~30 days in bed and another recently beginning in September and only abating about two weeks ago. I have an old back injury and atrributed these episodes to aggravating that injury, as both times the pain started suddenly a few days after physically working and lifting "too much" weight.  I am on prograf and MyFortic and as said have had pain episodes before in my life - but never as bad as these were. 

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