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Mouth ulcers - any tips from fellow sufferers?

Hello. I'm 120 days post-transplant, doing well generally, still on untapered ciclosporin dose and acyclovir. Mouth ulcers (which I am told are not GvHD symptoms) are a persistent problem - they seem to come and go. As soon as I get rid of one, another emerges. I'm trying all the obvious things - avoiding acidic foods and drinks; applying Bonjela gel and Corsodyl gel; gargling Difflam mouthwash for pain relief and chlorohexidine mouthwash for germ control; and even eating yoghurt to boost mouth alkalinity!

If anyone else out there has suffered similar mouth discomfort and has found a successful formula for pain management and relief, I'd love to hear from you.


  • Hi James,

    I had problems with my mouth, just after I was discharged for the first time from hospital so was a lot earlier post transplant than yours. Mine was a fungal infection and my mouth was in agony. It was probably the lowest point in my treatment as it meant I was readmitted to hospital three days after I'd first come home.

    The skin on my tongue cracked and split and was covered in what looked like white fur. I wear a partioal upper denture too and this became impossible to wear as the roof of my mouth was extremely tender. The worst of the conditions lasted around 10 days but it took a couple of weeks longer to clear up completely. I was on a course of 4 different mouthwashes four times a day, which anaesthetised and sterilised my mouth and gave some pain relief, but that never lasted long.

    I did find that one of the mouthwashes had more of an anaesthetic effect than the others (I can't remember which I'm afraid), so if things became unbearable I'd give my mouth an extra wash and hold the mouthwash in the affected area in my mouth for longer to try and numb the area. I found Corsydyl quite strong and harsh so it may be worth trying tio find something a little milder?

    It sounds to me like you are doing all the right things, so hang in there and it will soon recover. Hopefully your body is in a better state to deal with the infections than mine was at the earlier stage.

    All the best,

  • Hi James,

    I'm experiencing very similar problems to you. I have had persistent mouth ulcers and soreness for the last three months (I'm now Day 150). I was initially told this wasn't GvHD but was instead reactivation of a virus. However over the past few weeks the medical team at The Churchill have revised their opinion and are classifying this as GvHD.

    I have been prescribed Flixonase Nodules as a mouthwash. These are nose drops which you dissolve in water; you then hold the solution in your mouth for three minutes. This does seem to have a very good anti-inflammatory effect and generally keeps my mouth bearable. I also use Corsodyl every other day but only after brushing my teeth at night. I have found that Anbesol is better than Bonjela at pain relief when things get really bad so maybe give that a go.

    I also find that certain foods trigger my symptoms. If I eat or drink anything particularly acidic like tomatoes or orange juice then I can feel my mouth flare instantly.

    Hope that is of some use.


  • Hi, I suffered quite badly during my transplant with ulcers. I found biotene better than corsodyl.
  • Your ulcers could well be GvHD, if they are lasting longer than a couple pf days, they are not your standard ulcers. Flixonase nasules as a mouthwash done four times a day can be helpful, alongside a spray of the same name to target individual areas. There is also a stronger spray called Budasonide which is stronger. If one ulcer on the tongue is particularly persistent, you can have steroid injected directly into it, which sounds a lot worse than it is. I have three years of experience of bouts of this so if you've got any other questions I'd be happy to help.
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