Thought I would share this, John was asked a while ago to write an article for dental magazine. Anyway last month he was asked for an updated version for the British Dental Journal Team , this journal is available on line and hard copies are posted out to Dental Practices all over the UK. It was published on June 3rd 2016. For those who don't know, John Mills was an NHS dentist for 40 years, he was diagnosed with GPA 5 years before he retired. He also had a patient diagnosed with GPA called Alan, who suffered with saddle nose and and a perferation in his palate.
I have GCA, and have suffered with tongue issues for 3 yrs which my dentist has always dismissed. Of these 3 yrs, 2 of them we're undiagnosed, fighting for answers. I had the jaw and tongue claudication, with my tongue twitching all night keeping me awake, as well as swelling to the tongue margins. More recently it has progressed to clots or haemorrhages in the tongue, resulting in damage to the tissues surrounding these areas, which does not recover. Thankfully my rheumatologist has now referred me to an "oral medicine" expert who I see next week, to hopefully get answers.
I can't see how to attach a photo or I would show you the damage that has occurred. But anything that highlights to dentists the damage vasculitis can cause is a good thing. Many thanks to John, from Runrig X
Me too: my mouth is full of scar tissue from erosive lesions on the tongue, inside cheeks, hard palate....I've had the blood blister-like lesions described as paroxysmal haematomas. Before my infant onset lupus diagnosis was recovered 5 years ago, dermatology thought these were due to Angina Bullosa Haemorhagica....these also occur into my throat.
More recently, my oral symptoms have been diagnosed by rheumatology & my periodontist + oral surgeon & co as being due to overlapping Vasculitis type SLE + SS + early onset PID (prior to treatment with immunosuppressives) + ehlers danlos vascular type. I take photos of every visual symptom I can...will try to post something photographic for you to compare to yours, runrig. I'm 62 and have been experiencing these all my life (my lupus is infant onset). Wishing you all the best with your versions of this stuff
Just a quick 'up date'. I saw my Dentist today, and only needed a 'Scale & Polish'. Apparently he is leaving, so I will have a new Dentist, next time-oh well!
Anyway all seems, at least teeth wise, Ok. So was my last Transplant Clinic 'check up', I have another in about six weeks time.
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