Question on treatments after transplant GVHD issues

[crpa]

Hi All:

My husband is post transplant approaching 90 days, and has now developed some skin GVHD and his liver enzymes had been high.
The doctors put him on high dose IV steroids to bring the liver levels down and that seems to be working.
Has anyone had this type of liver GVHD and if so if it happens before the 100 days will it clear up later on when he is off the steroids.
It is very unsettling.
Please write with experiences with GVHD, I would appreciate any input.
The doctors said he may be a bit behind in his progress due to his age and he had a MUD transplant mini transplant and has done well so far.
Thanks for any help.
Sincerely
Wife and caregiver Christine

[crpa]

Hi All:

I guess no experiences with liver gvhd after transplant.
My husband is still on the prednisone and cyclosporine which are hopefully working to create the gvhd gv leukemia effect.
Now it is a watch and wait, his liver levels are much better, but dealing with the side effects of high dose steriod plus cyclosporine.
We will continue the battle with this tricky disease.
Take care
Christine

[evansmom]

Hi Christine,

Glad to hear your husband's liver enzymes have settled down. My son had a BMT for aplastic anemia in 2008 and he had no GVH what so ever, which is the desired outcome for AA as there is no benefit to having GVH unlike MDS/leukemia. He did get odd little localized eczema patches that responded to hydrocortisone cream but no one thought it was GVH, including myself. Evan did have elevated alt/ast, both upwards around 250 frequently from around 6 months post transplant to 18 months post transplant. The BMT doc wanted to call this liver GVH but because the liver labs weren't climbing any further and his bili was normal, we did not treat it, rather just monitored it. I never believed it was liver GVH in view of the fact he never had the more common GVH afflictions of the skin, gut etc. The more I researched, the more I became convinced it was viral illnesses that were temporarily driving the alt/ast up. As you know, viral illnesses are very common and to be expected in the post transplant period. Looking back at his viral panels and the fact that he had some night sweats during that time period, it would appear as though he was fighting an EBV infection, probably mononucleosis.

All that to say that just because the liver numbers are up doesn't necessarily mean GVH. Steroids can temporarily settle anything down, regardless of what may be going on. Steroids also lower one's already low immune system, so it's a tough choice.

For us, I'm glad we waited and watched because things settled on their own.

Was it just your husband's alt/ast that were elevated or was it other numbers too like the bilirubin, amylase, GGT etc.? How high was the alt/ast? Is he already on antvirals (which tax the liver themselves)?

[crpa]

Hi:
Thanks for your reply.
Larry's liver levels went up to 4 times the normal, they were pretty high the one alt I think was up to 1800. His other counts the bili level and other have been good.
Yes, he is on all antiviral and the doctors are definitely keeply a close eye on the infection front.
The doctors are hoping in his case that it is the GVHD a bit , because Larry unforunately still has some blast cells so they are trying to mount a war against the bad cells, it is a very fine tight rope we are walking, but we are
confident in the doctor's ability.
It is just very unnerving, we thought we would be home after 90 days.
We live about 3 hours from the hospital, so we are staying at an apartment by the hospital.
TY for your time
Happy Thanksgiving to all !!!
Christine

[Mary4Mike]

Christine,
My husband also had elevated alt/ast levels post transplant. His doctors ordered a liver biopsy which showed high iron levels in his liver. This was causing the raised liver counts. Prior to transplant he had had several PRBC TXs and went into transplant with a high ferritin level. Once his CBC's were in the normal range, they began phlebotomy and his ferritin and liver counts have come down. That was the only treatment they did for it. He never took steroids. He never experienced skin problems, however, he had extremely dry eyes and mouth. They cauterized his tear ducts and this helped considerably. The dry mouth and taste changes has slowly come around.
If you have anymore questions, I would be glad to offer our experience.

Mary

[crpa]

Thanks for the advice.

Larry's liver enzymes did not go up until the cyclosporine was tapered off.
It is the alt and ast levels , everything else related to the liver is good.
Who knows.
His platelets are now lower, but the doctors believe the gvl effect is now working on the blast levels because they are lower.
It just seems the battle keep getting longer, I guess all we can do is take it day by day.
Thanks for your thoughts.
Chris