Fissures tongue, mouth sores, white tongue, massive pain, inflamed tongue with sores running along lips and cheeks. .
I have been living with this for a couple of years now. Sometimes it just subsides and I can eat n sleep but has anyone else ever had anything like this and found any relief?
Have you double-checked with your GP just to be sure it isn’t something simple like oral thrush? It can be painful and cause all sorts of issues if it gets out of hand in someone with a suppressed immune system. I realise you probably have, but just in case.
Certainly I get similar to what you are describing, but the dermatologist seemed to think it was connected to Crohn’s, not psoriasis. My symptoms fit those you’ll find if you Google orofacial granulomatosis, or oral Crohns. My lips swell up and when they return to normal have palpable lumps in them, as well as the fissures and sores.
A number of autoimmune conditions are associated with apthous ulcers as well, I had a lot of these at onset of PsA. Dry eye also includes dry mouth and will cause problems too.
The only thing I’ve found so far that works to resolve symptoms is mouthwash made of steroids, or systemic steroids, though I haven’t been on a biologic whilst these symptoms are happening, and I’m finally starting Remicade in 3 weeks so fingers crossed that will work.
When it is bad I use the over the counter anaesthetic mouthwash before eating and just before going to bed, and if it wakes me up at night.
I think it might be really worth while going to see an oral specialist though if you are able to?
I have and my GP sent me to a dentist then to an oral surgeon. They took a tongue biopsy but it came back negative. Sounds like you have had some real issues as well. I have not heard of some of the conditions that you mention and will look them up. I do hope all goes well on Remicaid for you. I’m currently on renfllexis.
It’s tricky - I’m glad there was nothing serious in the tongue biopsy but it’s hard having all those symptoms (and presumably inflammation in your mouth) without knowing what’s causing it. I’m not too sure what else to suggest but that the anaesthetic mouthwash was a bit of a lifesaver at night (there must be so many nerve endings in our mouths - it can be really painful!).
Actually I looked up renflexis and realised it is the biosimilar for Remicade, since I’m in the Australian public system that’s likely to be actually what I’m starting (just gets called infliximab here).
How have you found it? Apparently they plan to start me on infusions then move me to subcutaneous.
It’s OK. My experience has been a little bit of a roller coaster. It seems to keep my skin good and arthritis down a little. For about a week after infusion I am more tired than usual and feel my flare ups about a week and a half ish before next infusion. It definitely helps but not as well as the cosentyx or enbrel did. I am ok with it. Going to see if there might be something that works better. My Rheumatologist says the meds are less for pain control and more for slowing degeneration. I wish you well and that you have a great experience! This disease is such a pain in the rear.