BMT: Anyone had Jakafi for GVHD Treatment?

Hi @scottmatteo Our livers can take ‘quite a licking but keep on ticking’…remember the old Timex commercials? 😅
My liver was impacted by the high intensity chemo for my AML treatments for several months before the transplant. So, of course it was also on high alert post BMT. If it’s any consolation, last September was the first time in 6 years that my liver enzymes were all in the ‘happy’ zone. (I’m now 7+ years post BMT)

It doesn’t take much to upset the those lab numbers. For me, even an OCT multi-vitamin elevated my numbers because of the excess Vitamin A. So if you’re still on the antibacterial/antifungals/antivirals along with some anti-rejection/anti-inflammatory meds those can certainly have an impact. GVHD was nibbling around the edges of my liver for quite some time. Being able to get off the meds helped. I was on Tacro (and the full war chest) for 2.5 years. It took time after weaning off everything for the liver to fully moderate.

Watching what we eat can be helpful as well. There are some foods that really benefit the liver. Here is just a brief list from Medical News Today
https://www.medicalnewstoday.com/articles/323915
Also, I remember having to return to Ursodiol for a while, which can help keep the liver cleared. Was ursodiol on your med list?

I’m (51 yo male) nearly 15 months post SCT for pMF doing well except liver enzymes are elevated. Prior to SCT I had one enzyme that was high but decided to proceed. Post SCT the enzymes took turns at normal and above normal to the point that they were normally above normal together. Dr ordered a more on depth blood test and my GGT was high- though I haven’t had a drink since prior to SCT bile ducts nor liver had any issues per MRI. This GVHD of liver pred helped but now tapered off and on Jakifi with mixed results. Went as high as 15mg twice a day to now -10 and 15 each once a day. Enzymes slowly rising again… platelets are normal RBC and Hgb are low but sustainable.
Beginning to wonder if I’m reacting to all the other meds anti bacterial anti fungal etc.
Better than the alternative.
Be well.

My husband was put on Jakafi for GVHD but it caused his white blood cell count to almost hit zero. They took him off of it and he is now on Rezurock with no side effects.

My husband had a SCT last August 22. Due to mixed chimerism he had to have a boost (donor lymphocyte infusion) of donor T cells in February. In April his liver enzymes skyrocketed and he was hospitalized for 6 days. He was given high doses of prednisone and the liver numbers subsided. After being released from the hospital he was started on Jakafi. Within two weeks his platelet count crashed to about 18. He needed transfusions at least twice. His transplant doc took him off the Jakafi and the platelets slowly came back a bit. Still very low but not transfusion level.
After the taper of prednisone his liver enzymes began to rise again. They continued to go up after he was put on budenoside. He was put back on prednisone and has been on 40 mgs daily for a month now.

Thank you for sharing this information. I’m sorry to hear you had so many issues prior to taking Jakafi and Cresemba. I am hopeful that this combination of meds will prevent/treat GVHD and fungal infections. Congrats on 3 years post-transplant!

Huge apologies. Should read “red man syndrome”

I have cgvhd of skin and eyes. I had several strokes last fall and had a “res man syndrome” reaction to the vancomycin they gave me. Horrible skin flare and was put on Jakafi and still taking sirolimus and very low dose prednisone. Because of HGB had to lower jakafi to 5 mg daily but it seems to be helping. Also on Cresemba because of a nasty fungal pneumonia that was sensitive to very few meds. Was on fluconazole prior to pneumonia. I am 3 years post transplant. Good luck!

Hi, Colleen: My liver enzymes are getting close to normal but the Prednisone is being tapered. I just started Jakafi yesterday and haven’t started Cresemba yet. Hopefully I won’t have any adverse effects from these new meds, and they will prevent me from getting GVHD in the future.

I have been on Jakafi for almost a year. I have skin GVHD. It’s working well. My only side effect is lowered hemoglobin. My doctor checks to make sure it doesn’t go below 10. It’s hovering right above 10.

Hi @edb1123,
As you may already know, Jakafi (ruxolitinib) can be used to treat acute graft-versus-host disease (GVHD) when corticosteroids or other types of treatment did not work well enough.

Along with @lag630's response, @alive @lanaluka @lel and @loribmt might have additional experiences with Jakafi and GvHD to share with you.

Are you tapering off prednisone? Are you tolerating Jakafi and Cresemba (an antifungal) well?