Oral ulcers

Walshy2016

Hello,

My fiancé had just this week stopped his ciclosporin. Has had problems with cmv and was on valganciclovir which knocked his counts down very low. He has now stopped this and they were hoping once off the ciclosporin his immune system would kick in to help fight this. Yesterday he started with sore throat, no temperature though, I had a look he has one small ulcer at back of throat. He is saying it is painful when swallowing but is managing to eat. We are seeing his team today at the hospital. We are both worried it could be oral gvhd. Has anyone had this? What should we be looking for and how easily is it treated if it is this?

Many thanks

Leah

greg777

Hi Leah,
I have not had oral GvHD but I did have fairly bad mouth ulcers quite soon after transplant. It turned out to be the herpes virus and an increased dose of aciclovir for 5 days sorted it out really well. Sorry I can't help further. Hope you manage to find out what it is and get the right treatment to sort it out really soon.
All the best
Greg

Walshy2016

Thanks Greg, they took some swabs today, have to wait for results. Hopefully it is just an easily treatable virus causing his symptoms.

Leah

RobA

Hi Leah,

I'm now 18 months post transplant and have been suffering from oral GvHD from about Day 90. I have frequent very large mouth ulcers (one after the other) and occasional soreness on my tongue/roof of mouth. I find that I can control my symptoms using a diluted solution of Flixonase Nasules as a mouthwash (although I'm not great at remembering to do this). When things are really bad I use a topical steroid ointment (Elecon from memory) which is really good at speeding up the recovery time. I've been told that this will eventually burn itself out but there's no sign of that happening just yet :-(, I'm sure your fiance's medical team will be able to come up with a protocol to manage the symptoms if it is indeed GvHD rather than a virus.

Wishing you and him luck!

Rob.

Walshy2016

Thanks rob, thanks for the advice, I hope your does start to fade out soon. His swab so far are clear, most of ulcers are healing now, it's hard to know yet I think. His cmv level also went up again this week so is back on valganciclovir yet again! It's really annoying as it drops his counts being on this so hoping it won't be for too long! Are you managing to eat well with the soreness?

Leah

RobA

No problem Leah. My consultant compares recovery post-transplant to a game of snakes and ladders which I think is a really good analogy. Hopefully the dice will be kind to your fiance and he will avoid most of the snakes!

My ulcers haven't really affected my ability to eat although initially I did find that certain foods and drinks (particularly anything acidic like orange juice) would almost immediately trigger a sore mouth. Luckily that does seem to be passing with time though.

All the best,

Rob.