3 replies to this topic

[MaryAlison]

Hello there. 

I had a Bone marrow transplant over 6 years ago to treat my CML. I am now 22 years old and still experiencing chronic GVHD. 

The most frustrating manifestation has been my dry eyes. I'm completely unable to produce tears and I constantly have to use artificial tears, steroid eyedrops, and antihistamine drops. I've tried all the conventional treatments including restasis and even specially formulated cyclosporin products. NOTHING has helped. 

After 6 years of practice, I've gotten pretty good at keeping myself comfortable but I'm curious as to whether or not anyone else has had this issue after their transplant? Or if anyone has had success in reversing their chronic GVHD problems? 

[hannibellemo]

Hi, Mary,

 

Congratulations on your successful transplant! I don't think you will find much help on this discussion board with GVHD. You will want to post your questions on the stem cell transplant discussion board. Most of us have no experience with transplant issues.

 

Here is the link to that board. http://community.lls...ransplantation/

 

Good luck!

[Trey]

MA,

GVHD issues can sometimes reverse, but so far your body has not found a way to do that.  So as you already realize, this is a long term issue requiring external measures.  It is important to keep the eyes lubricated for protection of the eye.  Can you induce any type of eye response from onions or hot peppers?

 

Here are a couple resources to look into:

 

http://eyewiki.aao.o...us_Host_Disease

http://www.bostonsig...st-Disease-GVHD

[danno]

Hello there. 

I had a Bone marrow transplant over 6 years ago to treat my CML. I am now 22 years old and still experiencing chronic GVHD. 

The most frustrating manifestation has been my dry eyes. I'm completely unable to produce tears and I constantly have to use artificial tears, steroid eyedrops, and antihistamine drops. I've tried all the conventional treatments including restasis and even specially formulated cyclosporin products. NOTHING has helped. 

After 6 years of practice, I've gotten pretty good at keeping myself comfortable but I'm curious as to whether or not anyone else has had this issue after their transplant? Or if anyone has had success in reversing their chronic GVHD problems? 

 

I have the same problem, I was told there is no cure for the damage the GVHD has done to the tear glands. I tried the restasis as well with no luck. I currently use non preservative refresh every 30 minutes, I also use Hylo gel drops 6-8 times a day. I also use serum eye drops 6-8 times a day. At night I use Ocunox ointment. During the day I wear sealed transition sunglasses to block wind and helps to keep the drops from evaporating so quickly. I also had my tear ducts cauterised. I take flax seed oil and omega 3 daily.

I tried the Boston lens (contact lens) and was not able to continue using it after a few weeks. I know some people has success using them.

It is one of the worst side affects from the transplant that I have encountered. I am just over 6 years post transplant.