Connect
Struggling with severe ocular GVHD after transplant: What helps?
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
Connect
@benzima
Gosh I am so sorry to hear about your challenges with GVHD. I don’t know where you live, but I can share that my husband was referred to Dr. Sandeep Jain at University of Illinois and ocular GVHD is his speciality. He believes in proactive management of this during the first two years after transplant, a window you are still in. He has helped my husband immensely! He has presented to transplant oncologists about his research and treatments. My husband’s transplant doctor at Northwestern Medicine in Chicago referred us to Dr. Jain. Here’s a link about him and how to contact his office.
https://hospital.uillinois.edu/find-a-doctor/sandeep-jain
I hope you can contact them to see if they can help you in any way.
Wishing you all the best.
Mary
-
Like -
Helpful -
Hug
5 Reactions@benzima I am sorry that you are struggling with oGVHD. Unless I am mistaken, oGVHD generally refers to dry eye disease. I believe oGVHD affects around half of all alloSCT patients within the first 2 years post-transplant, so you are not alone. Your post does not mention if you have seen an ophthalmologist for your condition. Following is my experience with DED for what it may be worth.
After around 4-6 months after my alloSTC, my eyes began constantly tearing up. Fortunately, I was seeing my hem/onc for my then biweekly follow-up blood tests and told him my symptoms. I was surprised when he and his NP suggested that I could have dry eye related to GVHD, given that I seemed to have excess tears. But they explained the excess tears resulted from my not being able to produce normal tears and the eyes were working overtime to provide some. They referred me to an ophthalmologist and got me an appointment very quickly. This eye doctor was not an oGVHD specialist, but had some experience with it from prior referrals from my transplant team. After running some tests, she diagnosed my DED. She prescribed two different eye drops, Cequa (main ingredient: cyclosporine) and Xiidra. My dosage was 1 drop in each eye, twice daily. I would wait a few minutes between inserting drops from both prescriptions. This had a pretty quick effect and my excess tears ceased. But, I did experience some burning after using the drops, especially with the Xiidra. Fortunately, my Medicare Part D plan fully covered both drops, as one was about $500/month and the other was around $800/month - if I remember correctly. My left eye was more affected, and for months, my vision in the left eye was somewhat blurred and "felt a little funny" when I was driving.
Fast forward to the end of 2025. Looking at renewing my Part D provider, I learned that they were dropping coverage for both Cequa and Xiidra. I was not willing to pay $1,300/month out of pocket. I discussed this with my ophthalmologist, and she changed my drops to Vevye (main ingredient: cyclosporine) and Miebo - one drop in each eye twice a day for the former and one drop 4 times a day for the latter. I could only find one Part D provider that covered Miebo and none for the Vevye. So, I changed to the provider covering the Miebo, which otherwise would cost $805/month. My ophthalmologist provided a source to obtain the Vevye for $165/quarter for a 90 day supply. I will tell you that this second combination has made my DED much more tolerable. I don't much blurred vision in my left eye and the burning from using the drops is significantly less. I supplement these drops with Oasis over the counter drops before using the prescription drops and during the day anytime I seem to have any dry feeling.
I know that my DED will not really improve over time (unless there comes some great cure) and that the damage is permanent. But the treatment I am now receiving has made this pretty tolerable.
I hope that you can find some relief from your condition very soon! Good luck to you!
-
Like -
Helpful -
Hug
3 Reactions@mary612 @benzima After seeing @mary612's post, I had just last week read the transcript of a presentation that Dr. Sandeep Jain had made regarding oGVHD. He has an oGVHD clinic at the University of Illinois, Chicago. Below is a link to the transcript. I hope it might provide some additional information that can help you.
https://www.nbmtlink.org/wp-content/uploads/2026/01/Transcript_nbmtLINK_2026-01-21_Lets_See_Whats-New_Regarding_Treatments_and_Proactive_Ocular_GVHDCare.pdf
-
Like -
Helpful -
Hug
4 Reactions@mikecaldwell
Thank you for sharing this, it’s so rich in helpful details and easy to understand explanations about the top thinking in the country regarding prevention of ocular GvHD and treatment of it. We count ourselves so fortunate to have been referred to Dr. Jain for my husband’s eye care. He and his team are educating transplant doctors in this condition that can affect around 50% of allogeneic transplant Patients.
Thanks again.
-
Like -
Helpful -
Hug
1 Reaction