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Chronic GVHD of the mouth

Hi, my husband is 9 months post transplant and following two top ups has delevoped chronic GVHD of the mouth, which is very painful and he is finding it hard to eat and drink. He has been prescribed an steroid mouthwash which doesn't seem to help. Just wondered if anyone has experienced this and how they coped with it and any idea how long it could last for. He also has the EBV virus and having treatment for this
Thank you


  • Hi Lyndsaylou,

    I'm sorry to hear that your husband is having trouble with GvHD of the mouth. It's not something I suffered from but I did have mouth ulcers due to a fungal infection a few weeks after my transplant which were incredibly sore so I can fully sympathise with what he's going through. My mouth ulcers only lasted a couple of weeks during which time I was on a cocktail of mouthwashes, none of which seemed to ease the pain.

    I'm fairly sure we've had other forum members who have had GvHD of the mouth so hopefully one of them will post an insight into treatment and duration.

    I hope your hubby gets the treatment he needs soon that will relieve his pain, and that he can get back to eating normally, which is so critical at the stage he's at.

    Please keep us updated with his progress and I hope someone can respond with their experiences.

    All the best,


  • Hello Lyndsaylou,

    I am sorry to hear that your husband has developed oral GvHD.

    From my own experiences, oral GvHD started 6 months after my transplant. Firstly, the inside of my bottom lip blistered up, then shortly after that the whole of my mouth, cheeks, etc. was ulcerated and red raw (especially my tongue).

    My Haem-Oncology consultant increased my ciclosporin dosage back up and prescribed steroid mouthwash (I think it was Dexamethasone). Anyway, this didn't help at all.

    I was referred to the oral medicine department at Guys Hospital in London, who were fantastic.
    They had seen it before with other patients. I started a course of high dose Prednisonlone steroids for a couple of months and steroid cream for the ulcers (Dermovate + Orabase). It wasn't an overnight cure and my own situation lasted for a couple of years. However, my mouth is now fine.

    I still have the odd minor ulcer flare-up now and again, but I just apply some Dermovate ointment and the ulcer goes.

    It did effect my mood at times as the pain was quite severe as well as not having a good diet due to the ulcers. All I could eat at one time was ice-cream and weetabix (as this was soft food). I still avoid some foods today (crunchy baguettes, some crunchy crisps, etc,) as it can sometimes create an ulcer.

    I hope my own experience story helps in some way.

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