Sore mouth and tongue with GCA

[Bummed24]

Quick question....anybody else experience a sore tongue and roof of mouth and gums with GCA? Along with mild numbness on lip and cheek area and the usual temporal headaches and scalp sensitivity?

[Grammy80]

Hi~! Yes, sometimes the whole head~~and then some. With your immune system compromised.....Have you had the shingles vaccine.🥴🙃 In 2019, I hadn't and got shingles on one side of my face in March 2020. You might be better off having your dentist take a look but I do think I'd get it checked out if you have any blistering or itching.

You mention 'mouth ulcers'.....red spots? blister-looking? Fingers-crossed, I'm so glad you are here.💞

[Bummed24 in reply to Grammy80]

Thankfully, I have had the shingles shot. But the red ulcerated area on the roof of my mouth concerns me. It' s been intermittently sore for several weeks. I just went to the ED because I have read of very rare cases where someone develops tongue necrosis. The ED knew very little about GCA and this potential and told me to call my rheumatologist on Monday. My tongue looks a bit blistered on the side. Arghhhh...

[Grammy80 in reply to Bummed24]

Oh, I know...Arghhhh! So glad you had the shingles shot and good for you going to ER/ED/AE. Scary, isn't it when the people in charge look at you with questions in their eyes? GCA? Could you spell that? I wonder if a gentle salt-warm water rinse would give you any relief...can't hurt or can it? Hopefully, you will here from Mayo soon.

Is there any way you can get a message to your rheumatologist before Monday...? Do you have Urgent Care Centers where you live? They are popping up here in the Midwest, usually attached to a Medical Center...they may call a rheumatologist. We've got one body, one life and I may err on the side of caution sometimes ...GCA taught me the price of lack of proper diagnosis. 💞

[Grammy80 in reply to Bummed24]

PS....there is always the dentist, oral surgeon...??💞

[Bummed24]

Exactly! The ED asked me to spell GCA. 😉 I am beginning to wonder if I am the only patient in the county or state with GCA. Nobody does temporal doppler scans here in CO, as I have been told.

The consulting rheumatologist thought my ulcerated area was not concerning, but gave no reason why. Will give her a call on Monday, unless things worsen. She said to up my Prednisone to 40 from 35. Will give the warm salt water rinse a try. Good suggestion!

[SnazzyD in reply to Bummed24]

Not good enough! If not concerned then what do they think it is? If they don’t think it is tongue necrosis, explain why; this patient is worried. Tell them what to look for in case TN does crop up. What was their thought on the facial symptoms? I doubt they would be satisfied with that response if it were them.

Have you tried a simple oral treatment for thrush? You may as well try. I don’t know if you have to get a prescription or can buy it there. A dentist or oral surgeon might be worth a shot too.

[Bummed24 in reply to SnazzyD]

Snazzy, those were my same thoughts in the middle of the night. If they were in my shoes...I asked why they thought it was not concerning, and the ER doc didn't know. Will try these suggestions, and keep monitoring. I guess I need to print off info about TN for the docs and ask them to please read.

[Grammy80 in reply to Bummed24]

No doubt about it...they don't see much GCA. We go to 'professionals' and feel the need to educate. I'm considering a mass mailing to some of the major medical schools in the US, really. They need to put more empahasis on this. Well, before that mountain...hopefully, your mouth is feeling better. I can hear Snazzy slamming her foot on the floor.💞

[PMRpro Ambassador]

I agree with the dentist recommendation for a sore place in your mouth that has persisted over weeks.