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Acute rejection after 8 years

Hi there, after 8 years of trouble free transplant life, I recently had a late acute rejection episode after a bad bout of flu. Have had 3 pulse Prednisolone IV in hospital and now on 10 x increase in Prograf etc. Anyone else had this, it is very scary and my ALT's are coming down very slowly. Just wondered if anyone knows how long it might take to recover, and taper down my meds as I don't tolerate Prograf that well. Any help or insights gratefully received !

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  • ok, here is an update - the AGT was very rough - but finally after 8 weeks in hospital it looks as though the rejection is reduced to an almost normal level. It turns out I may have a very rare auto immune reaction to taking Interferon which has complicated things. This may be a problem for fibrosis in the future, or it may clear up on its own. Complications have been a re-activation of Esptien Barr virus or CMV which is making me feel very low, and I am now on anti-virals for that, plus a high load of oral immunosuppressants (2 + 1 Tacrolimus, 2000 MMF, 20 mg prednisolone) for the foreseeable future. They may have saved the liver, but the rest of my body is flattened! Will take about 3 - 6 months to get back to 'normal' but I am happy and finally out of hospital. I think the auto immune problem triggered the immune reaction from the flu, plus being on too low a dose of immunosuppressant, so very unlikely (under 1%!) to happen to anyone else. 

    • You can see that better days are ahead?  I hope and pray you continue to improve.

  • After tx, I have had flu shots for last 16 years without any side effects.

    In the first few years after tx, I had a flu or cold every winter. Since then, I have learned I have to wear masks when contact with sick people, frequently wash hand before touch food, keep consistent hydration, eat healthy food, and routinely exercises.

    Take care.
  • I did my liver transplantation (hepatitis B) six years back. I was,in the initial stages, under heavy dose of Entecavir(for Hepatitis B) and tacrolimus,. Though my DNA test for Hepatitis B proved that the virus has disappeared totally, the doctors insisted that I continue with the medication prescribed earlier. But I decided, as I am primarily responsible for my health and life, to discontinue medication what the doctors prescribed. For the last three years I don't take any medicine and I am quite healthy; I don't know if my case can be replicated in similar cases.

    • CP, are you monitoring your HBab (antibody), HBag(antigens), titters, and getting regular HBig infusions to protect against HBV? I too am on Entecavir 0.5mg daily but feel it is unnecessary when taking HBig infusion. I will ask the Hepatologist next month.
  • I know someone who had a rejection episode 20 years post-transplant due to them just deciding one day to change her rejection meds.  Our bodies will always be in a very delicate balance.  So sorry you got the flu and are having to deal with the rejection episode.  Be sure and always get the "Non Live" flu shot each year and never get the LIVE shot or spray.  We look forward to hearing more as you find out more from your doctors.

    Liver Transplant 7-2015

    • No, never got a flu shot as one of my consultants said not to, even if not live. In answer to Steve Pearsons comment, the immune system kicks into such high gear it starts to recognise 'foreign' liver, it was a bastard of a swine flu I was pretty sick with it. I have had a lot of problems with this, been in hospital a month, they put me on IV Prednisolone which brought the inflammation down a bit, but then stuck, so had a second dose a week later, same result. I am now on a hideous drug called AGT which is given IV 8 hours every day from 7 - 14 days . It is a very high immunosuppressant used in bone marrow transplants when they want to kill off the T cells. It is tough, but has a good result rating, so I am hopeful. It is unusual for acute rejection to be steroid resistant, they don't really know why mine is so stubborn. It turns out I was on too low a dose of Tacrolimus, which I am annoyed about, as I get my levels tested 6 monthly. Wish me luck!

  • Never been there myself, and very sorry that you are there now!  I will certainly be following your story.  Keep us informed, please.

    Curious:  Had you had a flu shot?

    Curoius:  What does having the flu have to do with a rejection?  Does the immune system crank up into overdrive due to the flu?

    • Any infection, viral or bacterial brings the chance that the immune system will "look" for invaders to eliminate, even with anti-rejection meds on board.

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