I have had PMR for 2 1/2 years and am currently taking 5 mg of pred per day. Last week I started having pain around my jaw joints followed by muscle pain in my cheeks. I asked my primary doc about this and he did blood work and my sed rate is normal so he dismissed it. Last nite I woke up in extreme pain around my jaw joints up to my head and I had to take a couple aleve and a valium before I could go back to sleep.
I do not have a rheumy - there are none in this area. What I want to know is do any of you with GCA have a normal sed rate on low dose pred?? and how was it dx??
I've been thinking it is TMJ which I had many years ago but it doesn't feel like that My cheeks in spasm is really odd.
I need some suggestions.
This is an extract that maybe of some use to you.
Sed rate can be normal - ask for a CRP test - Creative Re-active Protein.
Sometimes that does not show either - but that is rare. Push hard. GCA if not caught in time can lead to partial or total loss of vision and its irreversible.
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The main early symptoms of giant cell arteritis
are headache and tenderness over the sides of the forehead. People with giant
cell arteritis need urgent treatment with steroids. Early treatment will
usually prevent serious complications such as eye problems and blindness.
- A
Headache is the common symptom. This may develop suddenly, or it can come
on gradually over several days or weeks. The headache can be one sided, or
on both sides, mainly towards the front and sides of the head.
- Sometimes
the temporal artery swells and can be seen around your eye, this too is
tender to touch. Tenderness
of the scalp over the temporal arteries is common. You may be able to feel
one or both of the inflamed arteries under the skin.,
- Other
symptoms may occur and include: pain in the jaw or tongue, particularly
when you chew or talk Often people are able to chew for a while but
eventually the pain, becomes so bad they have to stop. If this happens you should be seek
medical attention at either your GP or hospital as soon as possible
Diagnostic procedures, which are in the publci domain, are available from pmrfighters@yahoo.co.uk
Dont' mess around - get cracking - I know I have GCA.
Mrs. UK,
Thank you for your reply. My question now is if your sed rate anc your crp are normal and there are no swollen arteries that can be felt, what finally convinces the dr that you do or do not have GCA??? I plan to confront him tomorrow so hope I have a response from you. He firmly believes that you must have a sed rate up near 90to have GCA. Jule
Jule
I am not a medic and can only relate what I have learnt and personal experience.
My sed rate was half the going rate for my age (ie 34) which is supposed to be the norm, neither my Gp or Rheumy will settle for that - they like 25 or below.
CRP rate was well over 20 (can't remember exactly) gather normal CRP is no higher than 10 and they like nearer 5.
If neither ESR or CRP shew GCA, but symptons are as said - then a Temporal Biopsy should be undertaken - email pmrfighters@yahoo.co.uk and then we can send you the diagnostic procedures.
mrs UK
MRS UK
I never had an abnormal Sed rate or C rp. However, I was diagnosed on symptoms only. I complained to my GP for almost a year that my hips, butt, shoulders and jaws hurt, only to be told that I was depressed and needed to exercise. It wasn't until after I have a severe pain in my left jaw that went to my temple, and eventually left me partially blind, did anyone listen to me. I was told I had PMR w/ GCA I have been on Pred for 2.5 years, 60 mg being the highest, I am now on 11. To answer your question, Jaw pain is indicitive of PMR and GCA. It can occur when you are having a flare up, even if you are on pred. You may need to go back up on the prednisone, but this would be a physicians call. Since you don't have a rhumey, I would certainly call my GP ASAP. They finally did a temporal artery biospy on me and found some inflammation there. DO NOT PUT THIS OFF!!!!!
It is imperative that you get medical attention. Don't end up like me and go partially blind.
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