Eye GvHD

Hi again and good you found our corner.

My first Allo was June 2014 and my second in Oct 2015. I did have some skin GvHD post Allo 2 and also in my Bone Marrow requiring 3-4 months of blood transfusions, but I have to say your one sounds a challenge.

I did have some eye irritation but nothing that lasted long. Let’s see if anyone can help you out. You may want to put some information in your profile as this can help a lot. Click here to see how to add details as this helps everyone to see a little about you and how best to reply to you and you can see our stories by hitting our Community names. 

Hi ,

what a bind! You must feel very frustrated. I have heard of this before but not often, and the only thing I have heard that helps is what I guess you’re already doing, regular eye drops. Have you been prescribed steroid ones at all, or are they simply tear-like moisturising ones? 

I really hope the drops help, and that you dong need them too often.

hugs xxx

Thanks, on a whole combo of eye drops - steroid, immunosuppressant, antibiotic, lubricants etc (6 in all!) and I’ve now had plugs put in my tear ducts ( sounds grim but didn’t hurt!). My ophthalmologist says there’s also a treatment which involves putting your own blood in your eyes which I was pretty horrified by but don’t think that’s needed yet thank goodness!

i think it’s more a frustration I suppose that I look completely fine yet feel quite restricted, even disabled by it when it gets bad. There doesn’t really seem to be much support. Struggling with this as a parent and feel like I’m just being left to get on with it.

Also, people generally just don’t get GvHD do they? Feel like I’m constantly having to explain it to people. When it got bad a few weeks ago I had to go to my local a&e and the onduty consultant fobbed me off saying that it was obviously conjunctivitis!!!! ( I did make it very clear that thus had caused damage to my corneas before and I knew what that felt like - I proved to be right. Wasn’t much consolation tho!

Wow Mike, I’ve just read your profile before I went to do mine to see the kind of things people share. Just wanted to say what an amazing and incredible story and how inspirational you are! Thank you for sharing  

Hi again  we all do what needs to be done to get through. There are a number of folks I made friends with going through SCT are no longer with us now so I have to say that I am very appreciative and every new day is a gift.

I do wish you some success in finding a way forward with your post treatment challenge.

Good to meet you and keep posting.

Feels like this GVHD is the gift that keeps on giving, doesn't it?

I think damage to eyes is very common. I belong to a Facebook group for GVHD sufferers and it does come up a lot. Some people seek out ophthalmologists who understand GVHD and the rest of us get advice that is fairly useless. Eye drops, heat packs... meh.

I'm afraid I'm going to lose my sight, which really makes me second guess my decision to have the SCT. Not a happy thought. And weirdly, I can't even cry over it anymore.

I hope your GVHD isn't that bad.