Struggling with severe ocular GVHD after transplant. what finally wor

Hi everyone,

I wanted to share my story in the hope that someone has been through something similar.

I had Acute Myeloid Leukemia and underwent an allogeneic bone marrow transplant in May 2025. My first GVHD flare happened in August 2025 and involved my skin and gut. Thankfully, it responded very well to Jakavi (ruxolitinib), prednisolone, and cyclosporine. My symptoms completely disappeared, and I was doing really well until December.

Unfortunately, I had a second flare during immunosuppression tapering. This one was much worse. My skin involvement was more severe than the first time, and I also developed liver involvement (elevated liver enzymes), gut GVHD, and eye GVHD. My doctors had to increase my immunosuppression again, which honestly felt like I was back at square one.

After increasing the Jakavi again, my skin improved , although it never completely returned to normal. My palms have remained red, and I have some skin discoloration, but I can live with that.

The real problem is my eyes.

I was diagnosed with ocular GVHD in February, and since then I've tried countless eye drops, lubricants, gels, and ointments. Nothing has provided lasting relief. At best, something helps for a short while before the burning and irritation return.

To make things more complicated, I developed an active viral infection, so my hematologist wanted to reduce my immunosuppression to help my body fight it. Fast forward about three months: the viral infection is finally under good control, but my eyes have become dramatically worse.

We've tried a high dose of prednisolone, increasing Jakavi again, and multiple topical treatments, but nothing has made a meaningful difference.

For those who have experienced severe ocular GVHD, what finally helped you? Did anything make a real difference? Autologous serum tears, scleral lenses, punctal plugs, ECP, or another treatment?

At the moment, I spend about 90% of my day with my eyes closed because it hurts to keep them open. They burn constantly, feel extremely irritated, and I can't keep them open for more than 4–5 seconds at a time.

It's been a year now, I'm exhausted, both physically and mentally. Some days I honestly find myself wondering whether the transplant was a mistake, even though I know it saved my life. I would really appreciate hearing from anyone who has been through something similar or has found something that helped.

Thank you for taking the time to read my post.