Thank you for your advice last week when I was terrified I might be experiencing TN from my GCA.
I did visit the ED on the advice of my rheumatologist since my temp spiked, but thankfully the temp dropped down to normal. I had previously slowly dropped my dosage to 25 mg, but flared after two weeks and so gradually increased my dosage to 40 mg. and plan to stay here for a few weeks. Then maybe drop only 2.5 mg. at a time? There must be a ton of inflammation happening!
It seems exasperatingly slow, but I don't want to flare again. My tongue and mouth have become less sore, warm saline rinses help, and my dentist said yesterday all looked fine. It was scary weekend. You all made it more tolerable!
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Bummed24
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Hi there Bummed24. I somehow missed your last week's post re the tongue and mouth ulcers which is a pity because I'm going through a bad time with the same since my GCA flare in June. Is there a link to your post as I'd like to share your experience. I've been having a wretched time with this including a sore salivary gland, for the last 6 weeks
Just read your post. My ulcers are white, all around the edge of my tongue and on the sides of my gums. (But definitely NOT Thrush) One on the right was the most painful and would not heal. I tried the warm salt mouthwashes first but they didn't make much difference. I took Diflam spray on holiday with me. It provided temporary relief but the ulcers remained. Once home I switched to alternate coatings of Bonjela and Manuka honey which is considered to have healing properties. Slowly things have improved (obviously I'm taking steroids too!) But last week the Salivary gland on the right became a little swollen and very sore, keeping me awake at night. This was awful for 2 or 3 days but that too is settling down at last.I too have read about tongue necrosis - terrifying. I've been diagnosed with LVV- GCA. (as well as PMR) I discussed the mouth ulcers with my Doctor. I asked him if it was possible that my recent GCA flare could have attacked the Lingual artery. I 've read that there are links with this and GCA ulcers. He said that it is possible but it's such a complex area that it would be impossible to actually pinpoint the inflammation. We were both agreed that it's a rare symptom of a rare disease. We are on our own with this one, you, I and the other few unfortunates! We clearly have to find our own forms of relief. Best wishes.
Hello Rubyju! Yes, it is such new scary uncharted territory, isn't it. We would rather be meeting at a Starbucks to talk about the Olympics!
My new rheumatologist felt that tongue necrosis was highly unlikely at my dosage of Pred. (40mg). I don't know if that's reassuring for you.
My dentist gave me an Rx for Benadryl , Malox, and Xylocaine. 60 cc each to swish with one teaspoon for 30 seconds and spit three times a day for one week to alleviate the pain. I don't know if that would be helpful. My soreness has settled down, and I hope yours continues to ease!
Yes. It's very low and I'm taking Ferous fumarate tablets but this is all part of a much more complex GCA related problem. The June Pet Scan showed inflammation in my Aorta and branch arteries, but also a small area of inflammation around the bowel. I was told that when there's inflammation they would expect my Ferratin to rise - not go the other way. They're hoping it's just a harmless polyp but I'm awaiting further investigation in case it's a bleed. They are very thorough at my local hospital - I can't fault them.
My Ferratin level was checked on June 19th and I've been taking 2 tablets a day since. The ulcers began just after the test and lasted for 8 weeks. They've almost gone now, so it looks like my the meds have been effective in that respect.
I did think of consulting my dentist too, and may yet, if things worsen. Fingers crossed that I'm on the up now.Re tongue necrosis - this is very rare indeed - but in our case it's understandable that the fear lurks at the back of our minds - we already have a lot to contend with! Take care.
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