Hi I'm an Aussie, 55 yrs and came across this site looking for my symptoms, right side of the face tenderness, headache. I thought at first it was another migraine which I don't get many of. But this one was different and still there the next morning. Replacing my dentures showed up that the right side of my jaw must be swollen as that side was tight.
So after reading this site, I thought I better get myself along to the Dr. I have been and had blood taken and have just had my first dose of prednisolone. Expect to find out results of blood test tomorrow.
Yes GCA is what the Dr suggested it may be. I'm hoping its not anything after reading what some have been through, or that I may have nipped it in the bud. My dad had Bell's Palsy abt 13 year ago, I was a bit worried abt that when I started looking.
Abt 5 to 6 hours drive from Coffs, I'm central NSW.
What counts as "central" - there is a lady from Canberra on another forum whose specialist is in Sydney. I think there are a few others too but not sure where.
Prompt action - by you and doctor. Symptoms certainly sound similar to mine with GCA, but strange if you didn't have any other symptoms like tiredness, aching and stiffness in joints beforehand. But we learn something new on this site with every post.
If it is GCA then your Pred dose will need to be fairly high, which unfortunately brings some pretty nasty side effects for most people, but the risk of loss of eye sight amongst other things is much worse.
Please let us know the results of your tests, and come back with any questions, comments, moans! There is a wealth of experience on this site, hopefully your questions will be answered, your fears allayed, and maybe a laugh or two to help you on your way.
I have had a really bad lower back for months only just getting on top of that. And I'm tired all the time. I also have osteo arthritis in one foot so I'm beginning to wonder about the steroid use.
It is said that more than 20% of GCA cases occur as the occult form - where there are no symptoms to speak of until in some cases the patient wakes up one morning having lost vision. In others there may have only been fleeting loss of vision (amaurosis fugax) or some signs of AION which would only be seen if you happened to have been to the optician and had a retinal examination or even merely an elevated CRP with no other signs:
"Because occult giant cell arteritis is a potential cause of blindness, its early diagnosis is the key to preventing blindness; it is important to recognize that 21.2% of patients with giant cell arteritis and visual loss do not have any systemic symptoms of giant cell arteritis. Thus, in persons older than 55 years, amaurosis fugax or visual loss, development of an acute ocular ischemic lesion (particularly arteritic anterior ischemic optic neuropathy), and abnormal C-reactive protein level, with or without elevated erythrocyte sedimentation rate and systemic symptoms, should raise a high index of suspicion for giant cell arteritis."
The lower back pain could be due to GCA. The tiredness most certainly can be attributed to the blood vessel walls being inflamed therefore limiting the blood and oxygen getting around your body as it should.
I have OA in left shoulder and knee, probably there prior to GCA diagnosis but not particularly painful.
Originally shoulder pains were attributed to frozen shoulder, so was treated for that with cortisone injections. Each injection worked for a few weeks only, and then wore off.
Not sure what you mean in your last sentence about steroid use and OA. High doses of Pred will mask most pains, whatever the cause, but as I found out, once you reduce you will find your AO pain is still there!
Thx for your interest, yes I was thinking of pain relief in my foot but worried that the OA would progress more quickly being on steroids. I am probably mixing it up with something else.
In respect of blood levels, in time you will know what is normal for you, that doesn't mean that's normal for everybody! Unfortunately, they are not tests that are taken when you are okay, so it's difficult to know what YOUR normal was prior to diagnosis. Plus they are only a part of diagnosing/controlling the disease - your symptoms are much more important, and as time goes by, you will know by them when things are under control and when they're not.
Currently they are in the process of being revised. I am one of the a Patient Representatives on that panel. It will probably take some time before the revision is completed.
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