Giant Cell Arteritis Diagnosis

I agree, info helps everyone with this disease! Sharing and caring is so important!
Have a great weekend!

Hi @mild835, after nearly a year of PMR (undiagnosed) and other symptoms, I was extremely fatigued and shaky in the mornings. I had to sit down or feel like I would pass out. My blood work showed anemia before I got the Giant Cell Arteritis diagnosis. It was anemia of chronic inflammation caused by the disorder and resolved with the proper dosage of prednisone.

Exactly how I feel in the mornings and sometimes (like today) shaky throughout the day. Some days I just have to sit down. I could sleep for 2-3 hrs in the afternoons, after a trip to the store. Anemia is not something I had thought of, but I will now. I never hear the result of my bloodwork. Here in Nova Scotia it's push, push for answers and even then it's not a given you will receive the answers. I know there is something going on...but don't know what it is. The only real way to get in contact with a rheumatologist here is to go into an ER and even then it's not a given. Thank you for your reply; shedding some light on the subject.

Well ... where should I begin?

I was diagnosed with reactive arthritis with uveitis some 20 years before PMR was diagnosed. Uveitis can cause blindness just like GCA so I had frequent ophthalmology visits which included a dilated eye exam. My ophthalmologist would reassure me that he didn't see any sign of GCA when he did my uveitis exam.

Reactive arthritis and uveitis are in the same "family" with psoriatic arthritis. The overall family of disorders is called the "spondyloarthritis family" of disorders.
https://www.arthritis.org/diseases/spondyloarthritis
All I know is that any type of inflammatory arthritis and PMR/GCA are a bad mixture of things. My rheumatologist said it would be impossible to "adequately" treat everything that was going on. I have also tried Arava (leflunomide), methotrexate and sulfasalazine during my total of 30 years of treatment spanning the years before and after my PMR diagnosis.

I had excruciating headaches around my left eye and left temple. Those headaches were incapacitating but they would come and go. I described the headaches to my ophthalmologist as "electric" who said the headaches weren't an eye problem. He knew what was causing the headaches so he referred me to a neurologist who diagnosed trigeminal neuralgia. I was given every medication imaginable to control neuropathic pain. Prednisone seemed like it worked better but the neurologist said trigeminal neuralgia wasn't treated with prednisone.

PMR lasted about 12 years and was treated primarily with prednisone. From my experience, prednisone only created additional problems except that it did seem to keep the pain and inflammation in check to a certain degree. Unfortunately, something dreadful would always happen when my prednisone dose got too low.

I'm now on a biologic treatment that targeted PMR which worked well for me. I was able to taper off prednisone after a year or so. Unfortunately, uveitis flared up again as soon as I was off prednisone and I was right back on 60 mg again. My ophthalmologist wanted me to try a different biologic to treat uveitis but it didn't work so well for PMR symptoms.

My rheumatologist gave me the choice between the two different biologics. I was told me to pick the one that worked the best for me.

I'm happy with my choice of biologics. I'm not taking prednisone anymore. Surgical interventions addressed some of the other problems I had.

Hello Oz @oztrax, Welcome to Connect, I also think GCA is a better name than temporal arteritis but then I'm not on the naming committee. Mayo Clinic explains the topic a little better than I can...

"Giant cell arteritis is an inflammation of the lining of your arteries. Most often, it affects the arteries in your head, especially those in your temples. For this reason, giant cell arteritis is sometimes called temporal arteritis."
-- https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758.

You will notice that we combined another discussion with your discussion here since it was on the same topic:
--- Giant cell Arteritis diagnosis: https://connect.mayoclinic.org/discussion/giant-cell-arteritis-diagnosis/.

You mentioned your question is about the slow progression of the condition when some of the symptoms previously were not always present and up to 2 months ago, your blood tests were normal. The only bell that seems to ring for me is that your GCA is not under control or you are having a flare up but I'm not a doctor or medical professional. I see that @dadcue has responded and I'm wondering if @tsc may also have some thoughts or information on your question.

It sounds like you have a good rheumatologist that listens to you. Were the surgical interventions related to the GCA?

Hi @oztrax, you have a lot going on. I'm sorry for all your pain.
I don't think it's unusual for symptoms of PMR/GCA to go on for months. In my own case, I h ad PMR for about four months, but my bloodwork was normal.
The weight loss and fatigue you described can be symptoms of GCA. The anemia of chronic inflammation causes the fatigue. I lost about 15 pounds because I had no appetite.
I think the sore scalp and pain in your temporal region are clues.
Did your doctor say the ultrasound is as effective a diagnostic toll as the biopsy of the temporal aretry is?
A physician friend told me if I ever had problems with my vision to go to an Emergency Room immediately as untreated, Giant Cell Arteritis can cause blindness.
I found getting a diagnosis of GCA to be a relief, as I finally knew what ailed me. I hope things go well for you. Keep us posted.

My last post didn’t appear here, I replied to Teri” but can’t find my post.

Last week has been crazy, 100% sure I have GCA as symptoms have increased:

Constant headache, sometimes stabbing with tingling scalp

Scalp tenderness isn’t really a good description, it’s like localized spots that are quit painful with some swelling around them , sometimes they “sting”
Got these in 4 places on scalp ATM and 1 on jaw.

Neck pain has become quite bad, again swelling and pain is localized to small areas, one very sore spot on top of spine.

Really bad tailbone pain, but it hurts most getting up, much better lying down.
In other words I can’t sit for long without this pain.

My last ESR in Jan this year was low/normal, got another test last week.

Also read that “Occult GCA” can have all the symptoms but lowered ESR/CSR. Either that or the Arava masks it.

See my doctor “General Practioner” in 2 days time, going to insist he starts me on prednisone immediately, would that be 40 mg or 60 mg to start with ?

Regards
OZ

Hi all, attached very good details of GCA ultrasound guidelines and expected results, note they recommend temporal, carotid and axillary arteries.

I am also requesting occipital artery to be checked as this is the one with most pain ATM.

If larger vessels like carotid etc have GCA, then biopsy is not possible.

Regards
OZ

Also found a good head artery diagram with the small branches labeled

@oztrax, Here's some information you might want to discuss with your GP if you can't see a rheumatologist.

" Five overarching principles and six-specific recommendations were formulated. Management of GCA and PMR should be based on shared decisions between patient and physician recognising the need for urgent treatment of GCA to avoid ischaemic complications, and it should aim at maximising health-related quality of life in both diseases. The treatment targets are achievement and maintenance of remission, as well as prevention of tissue ischaemia and vascular damage. Comorbidities need to be considered when assessing disease activity and selecting treatment."
--- Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica:
https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429