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Old Thu May 17, 2018, 08:23 AM
rar rar is offline
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Join Date: Mar 2014
Location: colorado
Posts: 215
Hi Meri,

Foreign object in eye when nothing inn eye is a GVHD symptom along with blurred vision, dry eyes and photo sensitivity. After visiting 7 eye doctors I found one who also knew GVHD. He said critically severe GVHD of the eye. Only way to cure is systemic treatment of GVHD. After 4 years of GVHD I got more aggressive with my oncologist. He said my best hope was imbruvica. I have been on it for 6 weeks. My 'feel like I am going to pass-out dizziness' is confined to fewer hours and doesn't even show its ugly head on some days. The eyes now feel fine except in a bad GVHD attack. I had been having daily numbness of the face and around my wrist daily. It is mo
stly gone excerpt once during an attack. Sore throat and mouth sores also better.

I realize that GVHD attacks are different in everyone so you can be experiencing different symptoms. Eyes and skin are common. The only bad symptoms from the imbruvica are constipation which is controlled and mild muscle cramps. The drug is expensive, fortunately I am getting it for free. If you have good insurance you may want to try it. Conventional wisdom is GVHD gets better with time. Mind got worse. Oncologist says that its not uncommon.

I wish you success. I know what you are going through.

Ray
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