Giant Cell Arteritis Diagnosis

Posted by oztrax @oztrax, Mar 24, 2023

I think GCA is a better name than Temperal Arteritis, as it affects more than just head arteries.
This last week I’m sure I have this condition, after 2 years of tests, specialists and a few thousand dollars searching for a diagnosis.

Fatigue isn’t the right word, it’s more like complete weakness in all my muscles and body. Have lost 12 kgs without even trying.
I was 56 years old when the fatigue started, 6 months later then inner ear vertigo, tinnitus and ear pain. Eg climb a ladder and vomit a few minutes later….ENT said it was Vestibular Migraine, with no cause or treatment available, but vestibular testing showed hydrops (inflammation in inner ear) .Migraine headaches were unbelievable.
Was bed ridden with this for 2 months then another 6 months before getting back to work full time.

End of last year I had GI issues, painful shoulder and lower back pain for no reason.
Around this time noticed tender scalp, which was very painful around right temporal region. Told the ENT about it and he said it was just muscular, nothing to worry about………
Last 2 months bad shoulder pain in both shoulders , minor pain both hips and both elbows. Looked like PMR, also had elevated liver enzymes, urine tests always showed dehydration and low Uric acid.

Also suffer from Psoriatic Arthritis which has been severe in the past affecting my fingers and toes, take Arava (leflunomide) daily for this, had been on methotrexate and sulfasalazine before this over the last 10 years or so.

So last week my scalp was so sore it was stinging around the right Temperal and right occipital areas. I was researching PMR at saw GCR mentioned and knew that’s what I must have.

Will have a temporal artery ultrasound next week, but I think they should also ultrasound occipital and frontal lobe areas as these are painful as well.

My question is : in my case this has been a slow progression of this disease , which is atypical and some of the symptoms previously where not always present . Also up to 2 months ago , blood tests were normal.

Maybe the Arava/Leflunemide and previous methotrexate slowed down both the onset and progress of the disease and hopefully I don’t have any permanent artery damage.

What are your thoughts and advice

Regards
OZ

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

John, Volunteer Mentor | @johnbishop | Oct 30, 2023

In reply to @runningfree "I guess I am looking for any kind of help... answers" + (show)

@runningfree, Please don't feel stupid about asking any medical questions. Questions are how we learn more about our condition and there are no stupid questions. You mentioned none of the tests your doctors supported the Giant Cell Arteritis (temporal arteritis) diagnosis.

"The gold standard for diagnosis is tissue confirmation from a temporal artery biopsy. At the same time, the presence of elevated inflammatory markers such as an ESR or CRP, in combination with symptoms and clinical signs outlined above, may be suggestive of temporal arteritis."
--- Temporal arteritis - PMC - NCBI: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765614/.

Did you have a temporal artery biopsy?

runningfree | @runningfree | Oct 30, 2023

In reply to @johnbishop "@runningfree, Please don't feel stupid about asking any medical questions. Questions are how we learn more..." + (show)

Yes. That's why I have the swelling now on the inside instead of showings as bad as on the outside. The dr that did the biopsy was so rude. I was too young and by the time he got me in the symptoms were gone. Because the other dr treated me right away with a high dose of prednisone. Even the dr that did the biopsy said he was not going to find anything because it was a slim chance, but he did a biopsy of both temples bilateral just in case.
The ENT dr was not happy with the other one waiting so long to do the surgery because he said there is not much right there that could cause that and one being sinuses which was not the case and the other being that. And being it didn't respond to the ER's meds but did the prednisone....

Teri | @tsc | Oct 30, 2023

In reply to @runningfree "I guess I am looking for any kind of help... answers" + (show)

Hi @runningfree, did you ever get a biopsy of your temporal artery? Did any of your doctors prescribe prednisone? Are your symptoms confined to your head or do you have pains throughout your body? Any fatigue?

runningfree | @runningfree | Oct 30, 2023

Yes to all the above

pag1949 | @pag1949 | Nov 2, 2023

Just diagnosed with GCA of the left temple. Started 60 mg per day of prednisone on October 26. My hospital in East Tennessee has partnered with the Mayo Clinic. Looking to join on line support group.
Patg1949

John, Volunteer Mentor | @johnbishop | Nov 3, 2023

In reply to @pag1949 "Just diagnosed with GCA of the left temple. Started 60 mg per day of prednisone on..." + (show)

Hello @pag1949, Welcome to Connect. That is great to hear that your hospital in East Tennessee has partnered with Mayo Clinic. It's good to have excellent care closer to home. There are many members with Giant Cell Arteritis on Connect that have shared their experience and are a great resource for any questions you might have. You might find it helpful to look through the different discussions related to GCA using the search function. Here are the search results for "GCA" -- https://connect.mayoclinic.org/search/?search=GCA.

Do you have any questions you are trying to get answered?

pag1949 | @pag1949 | Nov 3, 2023

In reply to @johnbishop "Hello @pag1949, Welcome to Connect. That is great to hear that your hospital in East Tennessee..." + (show)

Thank you so much for your response. I am really happy I found this group. Since GCA is so rare, I think there are probably more people nationally with this disease than in East Tennessee.
Is it true that the Mayo Clinic is one of the top hospitals for Rheumatology and research ( and I am assuming GCA)?
Thanks
Again.
Patg

John, Volunteer Mentor | @johnbishop | Nov 3, 2023

In reply to @pag1949 "Thank you so much for your response. I am really happy I found this group. Since..." + (show)

Mayo Clinic is one of the top hospitals for Rheumatology according to U.S. News Health - https://health.usnews.com/best-hospitals/rankings/rheumatology. I don't have GCA but was diagnosed with PMR by a Rochester Mayo Clinic rheumatologist.

dbyrne | @dbyrne | Nov 3, 2023

In reply to @pag1949 "Just diagnosed with GCA of the left temple. Started 60 mg per day of prednisone on..." + (show)

I was diagnosed with GCA in July. Was on 60 msg of prednisone, now I’m on Actemra injections every 2 weeks & being weaned off prednisone. So far, doing well, fingers crossed.