Chronic GVHD 2 years post transplant?
 

Hi all - I'm new here. This seems like a very welcoming community, glad to have found it :)

My mom had AML diagnosed December 2015 and had her BMT in May of 2016. It has been the bumpiest road ever imaginable (her longest hospital stay was 10 months!) with complications of acute GVHD and infections.

The past 6 months have thankfully been a bit more stable, but she continues to struggle with cGVHD. She finally got taken off Prednisone last week, but her liver enzymes are up again and it looks like she has skin GVHD too (manifesting as scar tissue).

Just looking for advice or your stories...it was my understanding that the further you are out from your transplant, the less the chance of GVHD occurrence is. It doesn't look like this is the case. Any one else have stories to share with GVHD?

Thanks in advance!

Great question. Generally speaking, if you have acute GVHD, your odds of cGVHD are much higher. It is true that GVHD tends to become milder or more manageable the further out from transplant you go. I have had GVHD since my transplant and am now over 4 years out. Mine is pretty mild in comparison to your mother it sounds like though. I have had cGVHD of the eyes, skin, and gut and have been on tacrolimus continuously, with occasional additions of the steroid skin creams, and a few different stints with entocort (budesonide for the gut)

I can say that the severity and recurrence frequency is dropping, but not completely gone.

There is a newly approved drug for cGVHD that might fit in your mother's case and may be worth the discussion with her doctor. It is called ibrutinib. it has been around for a while, but was only recently approved for cGVHD.

Also, photopheresis if it is available might be useful for some of the skin GVHD.

My transplant was 3.75 years ago. At 3 months I came down with CDiff, aGVHD and spent 2 months in hospital. i can't tell you if the food is any good as I did not eat the entire time. The nurses told my wife I was not expected to live, I showed them. I lost 60 pounds. I was discharged and put on tacrolimus and prednisone and a lot of other drugs. 2 months at home and was allowed to eat again. I got better and at a year post transplant I was told I was engrafted and should stop all the medications. 3 days later I came down with bad cGVHD mouth, throat, eyes, and head to toe itchy painful rash. Back on drugs again I got somewhat better over the next year. I know the effects of GVHD are supposed to get better with time; my eyes got worse. It is the the point that I am so dizzy that I am not able to live a normal life. I have been to 7 eye doctors. 6 said I have dry eye and tried to treat the symptoms. The last one said I have very severe GVHD of the eyes which is causing confusion in my mind that causes the dizziness and I should be seeking a systemic cure for the GVHD. I saw a neurologist who had to look up GVHD. She said my bad hearing and eye problem interferes with my ability to orient myself in space and causes the dizziness, not GVH. She thinks my problem is either in a neck or head problem. She recommended physical therapy, a MRI of head and neck, and blood test for autoimmune diseases. The two opinions seem similar.

I am getting the recommend dry eye glasses. They form a chamber around the eye to keep the humidity up. I passed on the giant contact lens that needs a week of training in Boston to use properly and awaiting test results. I have also started imbruvica (ibrutinib). It is supposed to give at least some relief to 2/3 of users. It takes between 4 and 40 weeks to see results. I will keep my fingers crossed. So far no results or side effects except for a rise in WBC and ANC which is to be expected. It is expensive, certainly worth a try if you can find someone to pay for it. I am not sure what else to try and welcome any suggestions.

Ray

Please keep us posted on the Imbruvica. I'm 3.25 years post-transplant, and among other things, have had severe dry eye and corneal erosions since about 6 mos post transplant. I don't make any tears (aqueous component) at all, so I did go for the scleral contacts. They are ridiculously expensive, even with 85% insurance coverage, and I won't be hitting any fastballs soon, but, honestly, I wouldn't be able to drive or type this msg without them.