How Long Till Liver GVHD Permanently Goes Into Remission?

[Flamingo Jim]

I am 20 months+ post transplant from a perfect donor match from my brother. The only issue I have had is flare ups of liver GVHD which only show in the blood work with high ALT/AST levels. When it happens, they up my dose of Prednisone around 20mg, the liver enzymes return to normal, and they taper me off Pred. But before I go all the way off, the liver flares up again and I go through another cycle.

For those of you who have had liver issues, how long does it take before the flareups end and your donor cells stop attacking your liver

And a more general question, how long does it take to completely get off all drugs, on average, if you have gone through standard treatment of care and have had relatively few post transplant issues?

[squirrellypoo]

Originally Posted by Flamingo Jim

For those of you who have had liver issues, how long does it take before the flareups end and your donor cells stop attacking your liver

My liver issues weren't GvHD but most likely a bad drug reaction, but even so, they took around a year to return to mostly normal levels, if I remember correctly. Your liver takes a LONG time to heal. That doesn't really answer your question, mind, but I thought my timeline might at least be helpful in that your liver levels move very slowly. Also, I've learned that I cannot have even a single beer in the 24hrs before a liver test, or it'll seriously throw the results, and in a bad way!

And a more general question, how long does it take to completely get off all drugs, on average, if you have gone through standard treatment of care and have had relatively few post transplant issues?

Well, in most cases we're on a prophylactic antibiotic for life - for me, that's Azithromycin once a day, every day (I just think of it like a vitamin). I was on Aciclovir up until the ~2-2.5 year mark, too, but those were the only long-term drugs. I quit most of my pills at about the 6 month mark.

(To recap, I had a mini transplant, no radiation, with only very minor skin GvHD, no prednisone, and a fairly typical set of infections post-transplant)

[Flamingo Jim]

Thanks for info, it has been a little over a year with my liver numbers being high. As of today, they are just slightly out of normal.

As for the drugs, it is not too bad. Daily prophylactic antibiotic, still on Tacrolimus, and a couple meds for the liver, prednisone being the main culprit. At one point I was down to 5mg every other day, but now at 10mg daily. I have been on prednisone for over a year now in various doses. So they will probably bump it down soon, and guess see if my liver stays calm this time

[Lori Patrick]

Jim, I, too have had high liver numbers. The dr is not sure it is gvhd - perhaps it is from meds. I am still on cyclosporine (100 mg 2X day) and recently on another immune suppressant (50 mg 1x day) due to a gvhd issue in my legs. I am on 30 mg of prednisone each morning until I return from my vacation. (Going to ride motorcycle to Dallas and then back all along the Gulf Coast!!!) I had skin gvhd that is calmed down now. My liver numbers were perfect last week! I think my doc will begin cutting me down in a couple of weeks. He told me the gvhd will burn itself out. I am left with spots all over (like a leopard!!) from the skin issue. I am still on most of the meds I left the hospital with almost 1-1/2 years ago. I don't know if the additional immune suppressant or the increase in prednisone fixed my liver???? Hang in there. Look at it like this, if our new cells are doing little deeds to our body - the MDS is gone! I can handle the issues I am left with, especially after reading from those less fortunate. Hugs and prayers, Lori

[jmbmont]

I am touched with how freely members post information, as a pre-transplant person every time I log into this forum I learn more....thanks