Tongue pain

I've been slowly dropping my Pred over the last year and am now paused at 10/11 mgs. My worst symptom is jaw pain and last night I was woken by terrible pain in my tongue. I suppose my lingual artery must be inflamed. It is so weird! My temporal arteries rarely hurt these days. I should probably up my steroids but I am so fat and just getting all my pills from the doctor is enough of a palaver. It's a Pollyanna day where I must count my blessings but doing it through clenched ( aching!) teeth. Trying to keep my steroids low enough to qualify for my hip replacement where they would like me on 10 or less. Heigh ho.

[Runrig01]

Hi Saxjody, you are the first person I've heard that has the tongue pain. For 15 months now I have had pain, swelling, ischaemic patches and clots along the line of the lingual artery. I am 48 with atypical PMR and normal bloods, my Rheumy says he has no idea what is causing the pain. An ENT specialist suggested I get a referal to a Maxillary Facial specialist. planning on discussing with my GP. Hope your tongue settles soon, cheers Runrig x

[Hidden]

Google 'lingual arteritis'. There are several articles about it in GCA. I remember reading your previous posts and thinking that's what you might have. Just been examining my sore tongue in the mirror looking for signs!

[Runrig01 in reply to Hidden]

Thanks Saxjody, I'm well aware of lingual ischaemia which can occur. Neurologist says it is unusual but possible. Rheumatologist says "not in my lifetime" because I'm 49 and normal bloods. Keeps increasing Azathioprine to manage head symptoms, won't allow me to increase Pred, I'm down to 5mgs. Staying there till I see neurologist end of July. Thanks hope your tongue is settling

[optimist-ok]

Hello Saxjody. During my PMR/GCA time I have had severe jaw & tongue pain but only when I was very ill at the beginning of the problems & last yr when I had a 'flare'. This happened when I reduced the steroids too quickly, & reached 5mg a day. Since then I have been much more careful & my GP has gone along with how I feel about the reduction of steroids. Its almost 3yrs since I became ill & am now down to 3mg a day. Fingers crossed! Hope this helps.

[Hidden]

I can't get below 11 at the mo even using the slowest introduction of 10s once a week. Have to sit it out here for a while ( like a year!)

[Asbeck]

I have read that jaw pain is one of the most common pains with GCA. I've also read that tongue pain is also a symptom, but not as common. Google Giant Cell Arteritis and tongue pain. I think that it's a relatively serious symptom.