Clinical trials: post transpant management of anti-rejection medications

I have been invited to take part in a clinical trial to reduce (completely?) anti-rejection meds. I am currently on .5 mg Prograf x 2 and 500mg MMF x 1 which I realise is quite low. Is there anyone out there who has dropped these entirely? If so, could you share experiences, either here or via message. I would welcome views of anyone else post transplant as to how they would respond to such an offer.

Mike

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  • Hi Mike that's interesting. Keep us all informed, how long have you been post transplant because I had heard that after many years (10-20) patients can sometimes be weened off the immuno suppressants. I was part of a trial when I had my transplant involving T-Cell therapy and a drug called ATG. I've been able to completely drop the tacrolimus and I'm on 1 and 2mg alternate days of sirolimus daily.

  • Hi Joe, I am 5 years post transplant.

  • My husband is the one with liver issues, so I would be interested in knowing if you decide to do it and if so how it goes.

    Many trials are "blind" trials meaning some are control groups and one or more groups are dealt with differently and there is no way to know which group you are in except possibly at the end of the trial. Trials can also end if there are significant good or bad outcomes.

    Good luck whichever you decide.

  • Hi Mike someone else I know has been invited to take part as well. He mistakenly thought he seen my name on the list of participants and we had a chat about it, then I read about it on NHS liver trials and you are in the right region had your transplant 5 years ago. They wouldn't ask me being so soon after, and I am only 0.5 mg of advagraf. Anyway me and my friend have talked about what we would both do, he isn't sure at all about taking part, but I would because I am on a such a low dose anyway. I would just have to get used to the constant monitoring again lol but only way we would be here now is other people agreeing to trials and I would like to do my bit as well for further progress..... Obviously all personal choice and I understand people don't want to take chances but they are going to be on you like a hawk and that's the part you have to decide can you live with :-)

  • Thanks for this and you have identified my sources of uncertainty. I am due to get more information from the research nurse so will keep you informed.

  • It's a difficult one, even before I had my transplant I was concerned about suppressing my immune system. Now post transplant l would like you think carefully. At the moment I am on 1mg of Adoport twice daily, which isn't too bad. My only side effect which may be the medication is bad tinnitus, so if offered I think I would give the trial a go just to see if it cleared. It's obviously a personal choice and if you do go ahead I will be very interested to hear how it's going.

  • At my last f/up at Kings I was told about they were recruiting for a trial of 3-5 year post op patients(I am only 3+months & on 10mg Advagraf) to see if they can predict who will be able to be weaned off the antirecession meds.

  • This is really interesting. I am 8 years post liver transplant. Was taking diverse anti rejection meds for the first 3 years but am now permanently on cyclosporine (which I have been told I will be taking the rest of my life 100 mg in morning and 75 mg evenings) These do however involve many changes regarding quality of life. HIGH BLOOD PRESSURE, chronic cramps which are causing my life a misery (but you don't want to sound ungrateful and accept it) Would like to hear any more progression on this subject !!!

    Louise xx

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