GVHD & Dry Eyes

[jhankewich]

I had a stem cell transplant 5 years ago. I have chronic lymphocitic leukemia. I have been suffering for the last year with extremely dry eyes which is caused by graft vs host disease. I have tried every eye drop available. Have also tried restasis (makes my eyes burn). I have plugs in bottom tear ducts, (helped for a short while), also had my top ducts cauterised (very painful) but worked for about 2 weeks. I also use blood syrum drops. Nothing is really working and was wondering if there is anyone out there that could give me any more suggestions?

Alden

[Rebecca Petris]

I had a stem cell transplant 5 years ago. I have chronic lymphocitic leukemia. I have been suffering for the last year with extremely dry eyes which is caused by graft vs host disease. I have tried every eye drop available. Have also tried restasis (makes my eyes burn). I have plugs in bottom tear ducts, (helped for a short while), also had my top ducts cauterised (very painful) but worked for about 2 weeks. I also use blood syrum drops. Nothing is really working and was wondering if there is anyone out there that could give me any more suggestions?

Alden

Alden,

Welcome to DEZ.

Please check out the Boston Foundation for Sight. The Boston Scleral lenses seem to be particularly well suited as a treatment for GVHD patients and this is well documented. I would recommend calling them, asking for Bill Rosenthal, and asking specifically for more information about the use of BSLs for GVHD.

[Rebecca Petris]

Alden,

Someone emailed me with the suggestion of bandage soft lenses as an alternative. Has this been tried yet?

[Laura]

Dry eyes from GVHD

Wow I can't believe these is someone else having dry eyes from GVHD.My name is Laura but it is my husband Chris who is the one suffering.He had a stemcell transplant in 2005,originally diagnosed with ALL.I have done hours of research on this eye deal and have had some results for him but unfortuantly it remains a struggle for any sort of cure only bandages.I strongly recommend the Scleral Lenses from boston Sight Foundation.It took some time for chris to get used to them but when he looks back now ,he realizes the changes in his quality of life.I will tell you that it didnt cure him he still has his days but in the big picture ,they have been a blessing.Call them trust me.
He has had plugs.....didnt work,he tried restasis...diddnt work, he has tried anti inflamtories...no luck, omega 3's...blood serum..no luck oh the list could go on...no luck.Currently he has had both eyes cauterized all ducts 3 times.He believes he should have done this much sooner however they seem to open up,strange especially how they claim it is an irreversable procedureIn fact he feels it opening agian todayDo you know anything about why they open up?
Theres not to many around with dry eyes as a result of GVHD.Sad that we are on here but sure great to know of someone to share with.

[MBC]

gvhd

Hi

You are quite a way from Boston but if you can get there you might want to see Dr. Dana at the MEEI. He just finished a clinical trial and though I was not part of this trial he allowed me to have a scrip. I am on day 2 so I can't say how it is going yet, but I am encouraged by the trial results and am hoping it will help.

[Rebecca Petris]

This thread is 3 years old and the user is no longer an active member. You could try using the private messaging system to contact them though.