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

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jcb25 | @jcb25 | Jul 24 8:09pm

In reply to @hoosierlarry "Originally from Nj. Went to IU in Bloomington Go Hoosiers!" + (show)

LOVE Bloomington! Many family members went to IU!
Yes! Go Hoosiers!! 😁

jeff97 | @jeff97 | Jul 25 8:01am

In reply to @jcb25 "Hello again @jeff97 Guess what! I sent a message to my rheumatologist about my “down” days..." + (show)

Thanks! I hope the slower taper helps you to start feeling good again.

ann31 | @ann31 | Jul 25 2:53pm

I was treated for GCA in 2019. My symptoms started across my facial bones near my eyes and in left temple. I saw my ENT thinking it was bad sinuses. He sent me immediately for labs. The labs were normal. He recommended seeing my dentist and opthamologist. Dentist sent me to Endodontist for extensive scans and test which were all negative. Opthamologist visit showed nothing in eyes But he wanted to treat it as GCA out of caution of sudden temporary or permanent blindness in eye near temple pain. He told me the only definitive test is temple biopsy looking for giant cells. However unreliable as the artery inflammation leaves gaps and biopsy could miss. I drove 300 miles to have a duplex ultrasound that diagnosed possible GCA. My Rheumatologist told me if GCA that my jaws would hurt and would become very weak and heavy when chewing food. My opthamologist was not as passive so he started me on 60mg of "nightmarish" prednisone. Tapered to 5mg over 6mos then possible flare so up to 80mg ordered by now new doctor(Neuro opthamologist). Finally off after one year. This was five years ago and still suffer from side effects of Prednisone. Unfortunately, I'm now having PMR symptoms in hips, shoulders and knees. I Do Not Want to Take Prednisone due to all the damage it caused. The sad part for me was within a month off prednisone taken to protect my sight I developed a hole in Macular. Surgery did not correct my vision.

jcb25 | @jcb25 | Jul 25 3:40pm

In reply to @jeff97 "Thanks! I hope the slower taper helps you to start feeling good again." + (show)

Thank you for your well wishes!! I hope so too, and have a good feeling it will!

jeff97 | @jeff97 | Jul 25 4:43pm

In reply to @ann31 "I was treated for GCA in 2019. My symptoms started across my facial bones near my..." + (show)

That's a tough story. Have you thought about Kevzara and/or methotrexate? The Kevzara can several weeks to take effect, but those drugs could control your PMR symptoms without taking prednisone.

jeanrod825 | @jeanrod825 | Jul 25 7:10pm

I was diagnosed with GCA in October 2024. I woke up one morning and my vision was blotchy and patchy with grey areas. Went to see Retinol Specialist and he knew immediately from symptoms I had been having. Very painful in jaw area and headaches. He started me on 80 mg prednisone per day and sent me to a Neuro Opthamologist. After couple of months she dropped me to 60, then 40 and I am now down to 3 mg for 1 week, 2 mg for next week, then 1 and then every other day for a week. About 1 1/2 weeks after going down, I would get. extremely tired. I also do better in after noon. All blood work has always come back normal. When they did biopsy, they did remove an occlusion. Has anyone had a recurrence and had to get back on prednisone? I hope I never have to get back on prednisone. Awful.!!!! Good luck to all of you. So thankful for this group.

asa | @asa | Jul 26 12:09pm

In reply to @jeanrod825 "I was diagnosed with GCA in October 2024. I woke up one morning and my vision..." + (show)

jeanrod825
My first round with Giant Cell Arteritis (GCA) lasted from 2018 to 2021. After a period of remission, I experienced a flare following COVID in early 2024. I restarted prednisone in September 2024 at 20 mg, but tapered quickly. Unfortunately, I couldn’t get below 10 mg without triggering another flare.

In March 2025, I began monthly Actemra infusions alongside a typical U.S.-style prednisone taper. That taper flared again at 7.5 mg, forcing me back up to 15 mg. Then that taper flared again at 7.5 mg, forcing me back up to 15 mg. I’m currently down to 10 mg and hoping my rheumatologist will support a slower, UK-style taper below 10 mg.

It’s been four months since starting Actemra, and I’m optimistic that it’s finally beginning to take effect. I’ve made it clear to my rheumatologist that, at age 83, if I can reach 5 mg of prednisone while continuing Actemra, I don’t want to risk stopping either medication and facing another flare.

randersonccc | @randersonccc | Jul 26 1:48pm

In reply to @ann31 "I was treated for GCA in 2019. My symptoms started across my facial bones near my..." + (show)

I’ve had definitively PMR for 3 years. I’ve not had jaw pain or chewing problems or chewing heavy etc etc. I am very sorry that a rheumatologist would be so set in their ways to say what they did to you! Since Covid these medical professionals need to reevaluate the always never syndrome some have. We need physicians that listen ask questions and consult with their piers in their medical practice as well as other specialties. There is a likely chance that these conditions and their variations have indeed been brought on by pharmaceutical industry whether preventative or treatment wise. 🤓

kathren | @kathren | Jul 27 8:49am

I appreciate everyone sharing their stories. I am thankful to find this group.
I thought I was recovering from a severe case of PMR for 18 months, dropping down to 2 mg. of prednisone and a weekly dose of MTX 2.5 mg, when I suddenly experienced GCA ten days ago! I can't put my head down, I have pain on the right side of my face both in front of and behind my ear. I haven't been able to sleep laying down as the throbbing and discomfort make it impossible. I sleep (when I can relax) sitting up on our couch.
My rheumatology practice is down to two rheumatologists (mine moved to another state in June) but they won't have a replacement until October. So my appointment is September 23!! I was put on the "waitlist"- my PA advised I call every day explaining my pain and asking where I stand on the "waitlist." He also said when the pain is too bad, take a Tramadol. I don't want to get addicted. He assured me that I won't since I take them so sparingly.
I turn 84 nxt month and am depressed to think I have to start back on prednisone and that this disease can cause blindness ad stroke. My DNA is northern Europe. No one had this disease. My mom lived to 97 and my dad age 90. Thank you for listening. It seems all of us receive some different treatments. I live in a small GA town an hour away from Augusta, GA and the medical centers and doctors.

jeff97 | @jeff97 | Jul 27 9:19am

In reply to @kathren "I appreciate everyone sharing their stories. I am thankful to find this group. I thought I..." + (show)

Have they upped your prednisone dose? It sounds like you should be somewhere between 40 and 60 mg per day. I have PMR and GCA, and I felt better immediately once I started on 60 mg per day. I had vision problems before I started treatment, but my vision turned out ok. I've been taking prednisone for 13 months, and Actemra for a year. I'm at 1 mg per day of prednisone now, and I hope to be done with it in 2 and a half weeks.

I've read that it is very rare for someone with GCA to lose vision once they've started treatment. I take a baby aspirin every day to lessen the chance of a stroke.