Advice dealing with chronic GVHD in the eyes and skin while trying to withdraw steroids

[lifeafterSCT]

Hello everyone!

I had a stem cell transplant last year and I am dealing with very uncomfortable Graft Versus Host Disease in my eyes and skin. The one in the eyes is the worse! I need to have drops every 10mins. Punctal ducts were helpful for three weeks only. I am waiting for some stem cell eye drops. Usually they make them from your blood, but the ophthalmologist said that because of COVID they will give me random ones, from another person. Anyway, I am on a waiting list, but I am very sceptical about the drops that are not made from my blood. My eyes are very dry and painful.

I have been taking prednisolone for many months. When I was tapering them I got very sick. I have been reducing the dose from 100mg per day (yes, very crazy!) to 10mg. Feeling very poor at the moment...

I would love to hear from anyone that has been through similar experiences, with GVHD and tapering steroids.

Have a wonderful day!

[JediReject]

Hi lifeafterSCT, , this is one post I'm well qualified to chip,in on having been and unfortunately still going through post SCT problems following high dose steroid treatment to alleviate my severe GVHD and reduce the impact on my liver and in other areas. I have been using blood eye drops for the last few years starting out by donating my blood at Liverpool every 6 months or so and then mainly due to the pandemic I now get donor drops. Of the two I felt my own (autologous) just had the edge on effectiveness but it could be psychological. I can assure you that using donor drops (allogenic) isn't an issue in terms of blood type or anything like that and they should provide some relief. I put them in 6-8 times a day.

Unfortunately the steroids are a necessary evil for many transplant bods. I hope you're getting regular eye checks at the eye clinic because I developed thick cataracts.

You haven't mentioned if the steroids or GVHD affected you in any other way (skin apart) but they did in my case and I'm happy to try and answer any other questions you may have.

You can use the chat option if you prefer as I know some of the issues can be sensitive.

I hope you don't have to wait too long for your drops which will be couriered to you in dry ice and need to be stored in the freezer.

Regards - Chris

[lifeafterSCT in reply to JediReject]

Hi Chris! Thank you so much for your response. I will try the chat now