Hey guys worried question about sores in mouth and raised rheumatiod factor,

Hey everyone, just wondering about mouth sores and vasculitis. My mom got her results back today from her biopsy, and the biopsy showed vasculitis. They are not sure of the type yet, but are concerned that she has cold sores in her mouth, and the doctor says this is not typical of the illness. But I thought I would ask anyone out there that may have had mouth sores or even a raised rheumtoid factor that has vasculitis or knows someone with the illness. Thanks so much :)

16 Replies

  • Lupus (SLE) is the condition that flags up for mouth sores to me but otherwise I'm afraid I don't know. You can have Vasculitis secondary to other connective tissue disorders. Hope it resolves soon.

  • thanks for getting back to me. The doctor did mention it could be secondary :) . And I'll read up on lupus SLE

  • Yes I had mouth sores just before I was diagnosed . I have WG which caused kidney failure nearly 8years ago.

  • I'm truly sorry to hear you have this. I looked online and this type could be what my mom has. Are you managing well, and did you have a bad skin rash at the beginning. Sorry for all the questions a lot of doctors do not know much about vasculitis only what is in a book. where as people that have it are the true experts. Any help would be greatly appreciated

  • I live a relatively normal life , the energy level is not as I would like,but ok . I had lots of symptoms before diagnosed...sinus problems, deafness , eye problems, joint pain etc but didn't have a rash but the consultant in the hospital was checking every time he come to see me if I had developed a rash. My kidneys have recovered from nil function to 29% so I have been very lucky. Hope your Mum gets sorted. No worry about questions ....ask away.

  • Geez sounds like you have been through a tough go, Thanks for sharing. Just wondering How did doctors finally come to the conclusion that you have WG vasculitis?

  • Hi, I suffered a very painful bout of mouth ulcers while I was very in hospital days before being diagnosed with Wegener, but it might have been caused by the high dose steroids etc

  • Oh thanks I didn't think about the medication maybe influencing the ulcers. If you don't mind me asking did it take doctors awhile to diagnose the type of did vasculitis?

  • The type of vasculitis was never mentioned while I was in hospital , I think quite a few of them overlap but treatment is very much the same. I did research when I was home and asked at my check up if it was WG and the answer was yes.

  • Thank you for all the information. Hopefully the doctor will let us know her type soon

  • I was diagnosed within three weeks after being admitted to hospital.

  • Thanks for ur information :)

  • I had very bad mouth ulcers before and at the time of being diagnosed with WG. Symptoms very similar to dorro but I did have a very bad rash also. When finally admitted to hospital WG was diagnosed very quickly through blood test (c-anca).

  • Thanks :) I'll ask when we see the doctor tomorrow about the c-anca

  • I have CSS and periodically get a mouth/gum sore(s). I just get Corsydil over the counter and use as specified on the bottle, which usually clears the sore. It hasn't been necessary to date but if the sore persisted I would see my GP. During my routine vasculitis consultant checks I advise any such treatment I have taken or been prescribed by my GP. This ensures everything is recorded.

  • Thanks for letting me know, and do you go into remission?

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