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3 Replies Last post: Jul 3, 2009 9:11 AM by Tex  
timandroberta@charter.net   4 posts since
Jun 28, 2009
Currently Being Moderated

Jun 28, 2009 1:03 PM

gvhd my eyes

Has anyone had problems with GVHD in their eyes? I have a burning sensation in my eyes where they dry up & produce some discharge. MUDD 05/08, relapsed myeloma 04/09. I saw the MD last monday & they gave me tobradex drops but have not been helping. any suggestions out there?

Tex   2,856 posts since
Apr 3, 2009
Currently Being Moderated
1. Jun 28, 2009 2:56 PM in response to: timandroberta@charter.net
Re: gvhd my eyes

I had GVH in my eyes. I don't remember a discharge but my eyes were red, gritty and dry.

 

I think I might have it again but my local doc is calling it "blepharitis."  That's an inflamation of the eyelids which leads to dry eyes.  I got the Tobradex gel, myself.  But I've got a follow up at the Hutch in August and I'm going to see if it's GVH.

 

You can certainly get a bout of GVH over a year out from transplant (hope they can get the MM back under control).  But itf you've relapsed, I wonder how strong the graft is.  It's tough to remember that other things can cause problems after a transplant that are totally unrelated to the transplant.

 

But you need to get some input from a doc that's used to seeing GVH.  That's why I'm not taking my local doc's dx of blepharitis until I've been to Seattle.  This guy's simply not seen much GVH, if any.  Experience counts for something.

 

In the meantime, you might check that you're doing the following, it's given me some relief.  Be sure you're using eyedrops without preservatives, if you're using the other kind of drops several times a day they can actually make the situation worse.  I used Refresh Plus.  They come in the little vials but you can reseal them and I get 3-4 uses out of each vial.  I go through 15-20 vials a day, which can show you how much I'm using them.

 

I also use Genteal eye gel a couple times a day, when I remember.  And I wash my eyelids every night with J&J "no tears" Baby Shampoo.  That's supposed to help open up the oil ducts in the eyelids.  And I try to drink what I consider to be excessive amounts of water.  The days I do that, well, they're just better.  And, I put the Tobradex gel on nightly."

 

Anyway, as I said these things give me relief.  But in the get to a doctor who's experienced in dealing with GVH so you can find a course that will get you on the road to possible healing.

 

Hope this helps.

 

Blessings

Tex   2,856 posts since
Apr 3, 2009
Currently Being Moderated
3. Jul 3, 2009 9:11 AM in response to: timandroberta@charter.net
Re: gvhd my eyes

Well, not everything we have post-transplant is related to the transplant itself.  Perhaps you do have an eye issue you would have had anyway.  It might turn out I've just got this blepharitis stuff.  But seeing an ophthalmologist expereinced in recognizing GVH is the best way to know.

 

Good luck.  I hope they get it fixed.

 

Blessings

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