Weaned down to 5.5mg Prednisolone over 21/2 years, had a recent flare possibly caused by surgery. Inflammatory markers elevated.
Instigated flare protocol for 10 days, reduced to 6.5mg but jaw discomfort returned within 5 days. Back on flare protocol for 5 days but jaw discomfort persists. Fatigue but no other problems. I think the discomfort/odd sensation might be worse after chatting with friends 🤷♀️.
Jaw discomfort was an initial symptom at diagnosis & was the last symptom to resolve.
I have a GP appointment tomorrow but I’m uncertain about what I want or need to happen. Grateful for any advice.
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Flinders61
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No worsening of symptoms when eating. Given that this jaw issue was present at diagnosis can it be attributed to PMR rather than a progression to GCA? What should I be requesting from my GP?
I had jaw claudication when chewing and also when singing - more intensive use of the muscles - but also had scalp pain and thigh claudication that went on over a couple of months and then it just disappeared. Baffled the Newcastle UK experts but more recently it is acknowledged that people do develope signs and symptoms of GCA along with PMR symptoms but then the GCA component seems to burn out and it reverts to more normal PMR.
No significant worsening of symptoms when chewing. Given the dose of prednisolone I’m currently taking can GCA be diagnosed in any other way or can I further increase pred for a short time without having to wean at a slower pace.
Only if they have someone trained in the ultrasound technique - a biopsy is a bit drastic without distinct symptoms.
You could try the flare protocol - add 5mg for up to 14 days and drop back to the dose where you were last good. But if that didn't work in the past - is it likely to now?
I’ll continue on increased dose & discuss with GP. Given it was an original symptom, the last to resolve & I have no other symptoms then I’m hoping it will settle 🤞
I have reported jaw ache throughout my eight years with PMR and it’s a lot worse now, but always been dismissed by doctors and rheumatologist. I have managed to taper to 3mg but getting a lot of pain behind my ears when tired and when chewing. Strangely I also notice it when driving.
I saw a musculoskeletal doctor and he told me I don’t open my mouth straight up and down and gave me exercises. The dentist made me a mouth guard which I find myself chomping on at night and now my teeth are hurting too. It’s a mystery I haven’t managed to solve.
GCA can lead to reduced blood supply to the jaw muscles. this tends to make them tire easily when chewing and they start to ache. The pain is called claudication - and the cause is the same as the calf pain people get when they have peripheral vascular disease, poor blood supply which isn;t enough when the muscles are being used.
Thanks DL that's interesting. When I wake up in the morning I sometimes have a pain in my neck, then as soon as I lift my head up the pain goes up into the right hand side of my head. It's not a severe pain and soon goes, During the day it reoccurs if I bend down then straighten up or I lift my head up suddenly.
Any thoughts on this?
Unrelated to this and following my annual eye test my optician has referred me to the hospital ophthalmology department due to increased pressure in my right eye possibly due to poor drainage. I've searched HU but unable to find anything relevant.
Increase in eye pressures may be due to Pred, it’s one of the common side effects, but would expect it to affect both eyes, so ophthalmologist may be correct in that it is a drainage issue..was any advice/medication advised?
Maybe try a warm compress on eyes to open up drainage ducts - if it’s going to be used a lot maybe get something like this from that well known online retailer!
Re neck/head pain, as it goes so quickly could it be related to head position overnight, even the pillow? During the day, could be anything from change in blood pressure to something more serious - so probably would be sensible to discuss with doctors.
Many thanks DL. I've checked out the pillow height, firmness and sleeping position but makes no difference. Forgot to mention that it hurts my jaw when I yawn.
Your suggestion that it could be blood pressure related is perceptive as on my last medical review it appears that my BP is low.
The ophthalmologist has ruled out Glaucoma and recommends a laser treatment to open up the blocked drainage however on my next appointment I'll discuss the possibility of GCA just to be sure.
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