Each time I've seen a doctor on this whole gca journey, they've seemed to lose interest when I confess that I haven't had any jaw pain on chewing. ( despite the fact that we know that less than half of people with gca get jaw pain)
In fact, the rheumatologist cited the absence as one of the reasons for saying I have "probable" gca.
Anyway. To business. On the advice of said rheumatologist (and probably against your better judgements) I've started to reduce my prednisolone dose.
I'm now on day 4 of 40mg having been on at least 50mg for about 9 weeks (and believe me I have the cheeks to prove it! 😱
Interestingly, I've started to get a fair bit of pain in my jaw (mandibular joint area) when chewing.
Oh the irony! The thing is , could this be due to steroid withdrawal or is it the whole beastly gca coming back?
Written by
Linda3009
To view profiles and participate in discussions please or .
Maybe the Rheumy chose to get you to taper quickly just to be able to confirm the GCA diagnosis when your old and new symptoms started to raise their ugly heads above the Pred again.
If it continues , past a few more days and things get worse and keep going down hill get on that phone to the Rheumys Secretary and tell him ( or her) the lovely news .
They can finally rubber stamp the GCA and will hopefully recommend you increase you dose again for awhile longer until the inflammation is firmly under control.
Take extra special care and pace yourself with lots of rests in the meantime.
And don't be afraid to start contacting the Doctor if you need any help .
How long ar you supposed to be on 40mg before the next drop?
In the meantime, Blurry eyes, flashes etc - off to A&E or up the pred back to where you started, which I presume was 60mg and then contact both GP and Rheumy.
Dear lord - and HOW are you to manage them without pred? What a stupid thing to say. All pred does is MANAGE the symptoms. Nothing else does - so what now sir??????
All you need now is to find previously acceptable spicy food/curry too hot and you have several clues to what may be going on. Hopefully drs will pick up on one!😉
I used Colgate toothpaste at the weekend as only one available during family visit. My mouth is full of ulcers and sore bits. I try and avoid it where I can but forgot my washbag. 😁
Have you got any of those hydrocortisone muco- adhesive buccal tablets for your ulcers , you can buy them over the counter , they do help , I have them from the Behcets clinic recommendations for mine , they can be used while on other steroids .
Other tips from Behcets sufferers are flat full sugar coke swill !!! I prefer a swill and swoosh with very fizzy sparkling mineral or tonic water before popping the tablet on to clean the sites.
Strong toothpastes and certain mouthwashes make them worse.
Encouraging your saliva if your mouth gets dry with a sour lozenge , or a little chunk of pineapple followed by a swill of water helps ease the pain too.
Crikey! I hope your brutes of doctors are satisfied now. Needless to say, pause or increase slightly, it’s gearing up by the sound of it. Definitely sounds duff to me.
Did you have jaw pain when initially diagnosed? Your doctor seems burnt out ,ignorant.or negligent. Jaw pain, chewing or not, is a symptom of GPA. Usually with chewing. But not always.
Reducing 10mg at once is awful if he told you to do that. I would go back to 50 and see if the jaw pain disappears. Not every symptom we patients have are related to C-ANCA, but a 10mg drop with return of symptoms in 4 days says to me find a new doctor quickly.
Even "garden variety" TMJ is now being treated with a Medrol pack;(called in US a short course under 2 weeks with tapering built in. I had it years ago, and it was not vasculitis related then, but it's really painful and annoying. I was prescribed a Medrol Pack and the pain was gone in less than 3 days, long before this now 3 year journey has begun for me.
I don't have GCA, but I was originally thought to have it b/c I had the PR3 antibody on C-ANCA testing. That's another story. I was downgraded to PMR by a smart vasculitis specialist at Johns Hopkins University Vasculitis Clinic in Baltimore, MD; I waited 5 months to see her, but it was well worth it.
Go back up to 50, and find another doctor with experience in GPA..That is what I would do.
I'm sure you don't like your cheeks. I recently found a scholarly arrticle published in the British Journal of Rheumatology from 1997 that says injected intramuscular depot methylprednisone every 3-4 weeks does not cause moon face, hump back, almost no fractures , less weight gain and removes many, if not all, the side effects we don't like. My dose started at 16; I was down to 4, felt miserable, and went up to 8mg and now feel well enough to go to physical therapy. My spirits are back.
I looked for the article just now and can't find it. Will send citation when I find it.
But do think of yourself first; if you need 50,, you need 50. Be kind to yourself. Don't suffer. Your taper must be very slow. I am sure the others have said that.
I saw the rheum 2 weeks ago and he said it was " probable" GCA.
I've just had a copy of the letter he's sent to my GP in which he states that although my presenting symptoms were indicative of GCA the negative bloods and biopsy would say otherwise.
He also makes it clear that even in the event of the symptoms returning the dose MUST NOT be increased.
He's going to review me in 6 weeks.
. I feel like I've got nowhere to turn. My GP is too afraid of going against a consultant to do anything and if I phone the consultants know that he won't agree an I increase in dose.
To answer your initial question, the jaw discomfort is new. I've had it for about a week now, since the dose went down to 40mg.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Chewing
Jaw pain revelation
Suffering severe jaw pain need advice
Jaw claudication
