Hello from Boston with GVHD

[MBC]

I am glad to find this forum and hope to both help others and find additional help for myself. I am seeing Dr. Dana - eye guru of all eye gurus (according to my transplant docs). I had a bone marrow transplant, dropped too low on prednisone and ended up with severe ghvd and corneal scratches. I am beginning both stem cell serum drops and a new experimental eye drop that I received because Dr. Dana was compassionate and thought it could help reduce inflammation even though the results of the clinical trial have not been published. The only place that makes it is the Mass Eye and Ear Infirmary. I am also on flax seed caplets. I Would love to hear from anyone with occular gvhd.

[Rebecca Petris]

Hello and welcome!

I think several members here see, or have seen Dr. Dana. Wishing you the best with your current treatments.

You may have already looked into this but if not... considering your location, you might want to check out Boston Foundation for Sight - many GVHD sufferers have had dramatic turnarounds with Boston Scleral lenses (now called PROSE).

[bp77]

I am glad to find this forum and hope to both help others and find additional help for myself. I am seeing Dr. Dana - eye guru of all eye gurus (according to my transplant docs). I had a bone marrow transplant, dropped too low on prednisone and ended up with severe ghvd and corneal scratches. I am beginning both stem cell serum drops and a new experimental eye drop that I received because Dr. Dana was compassionate and thought it could help reduce inflammation even though the results of the clinical trial have not been published. The only place that makes it is the Mass Eye and Ear Infirmary. I am also on flax seed caplets. I Would love to hear from anyone with occular gvhd.

hi, can u give us any info on this new eye drop that reduces the inflamation. Is this like stroied drops? I pray every day for the cure or new drug. thanks.