GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

The rheumatologist wants to start me on methotrexate but I also have epidermolysis bullosa simplex and have always had trouble with my skin; considering that skin issues are a major side effect of methotrexate I don't think he's being particularly very responsible with that recommendation. Here in Canada, biologics are not necessarily always approved for payment by our medical system. I suspect I will have to work hard to convince this doc to advocate for me.
THank you so much for your input here it really helps! It's good to hear yor story.

"Here in Canada, biologics are not necessarily always approved for payment by our medical system. I suspect I will have to work hard to convince this doc to advocate for me."
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Biologics also aren't always approved for PMR by insurance companies in the United States. For RA and other autoimmune conditions they are but not PMR.

My doctor offered to advocate for me to get Actemra approved. I asked another doctor what my chances were for Actemra to be approved. The answer was "not likely" to be approved. The funny thing was that I was relieved to hear it probably wouldn't be approved. PMR experts on the internet were saying Actemra side effects might be worse than prednisone side effects and prednisone was the only option. They discouraged me from trying Actemra. I was glad that Actemra probably wouldn't be approved.

My rheumatologist first made me commit to trying Actemra IF he could get it approved. He didn't want the hassle to advocate for me if I wasn't going to try Actemra. When my doctor informed me Actemra was approved, I wasn't so thrilled. I made the commitment so I tried Actemra. I didn't think Actemra would work so I was very pessimistic about it.

Now I'm very happy with Actemra, I don't seem to have any side effects from Actemra. I was taking at least 5 additional medications to treat prednisone side effects. Not only did I get off prednisone but all those other medications were stopped over time as well.

My biopsy was positive for GCA. I got the results about 4 days after they performed the biopsy. By the time I got the results I had already received 3 infusions of 1000 mg of methylprednisolone, and had taken 2 doses of 60 mg prednisone. They started treatment with me before getting the biopsy results because I was having episodes of temporary vision loss. My vision turned out ok.

You are in a difficult situation because they did the biopsy so long after you started taking prednisone. The giant cells could have already shrank back down, or they might have taken the biopsy in an area that doesn't have giant cells. So a negative biopsy won't mean that you don't have GCA. What symptoms were you having that caused the GCA diagnosis?

It started with a terrible pain in the side of my neck and developed into pain in front of ears. It was late in the evening when I discovered a vein popping beside my left eye and realized that was not normal. At the same time I developed severe bodily chills and pain at the front top of my head. Also pain in my teeth, and the side of my jaw had been occurring for a couple of days. For some reason I was also having trouble thinking clearly. At this point I had been on 25 mg of prednisone for just over a week. I called the nurse helpline and they sent me to emergency, the nurse saying she was concerned about me and if my daughter didn't come soon to pick me up I should call an ambulance.
I get to the ER and they put me in the waiting room for 7.5 hours, admitting in patients with stomach problems first. Chest pain always goes first, I get that, but this was ridiculous. Then when I see the doctor, he tells me GCA pain doesn't move around. I get an eye test and my vision in my left eye had changed and I hadn't really noticed. Doc reluctantly gives me decision to up dose or not. I get the dose upped and leave, walking home and very angry.

Several of your symptoms sound similar to mine. I had a low grade fever for several months before being diagnosed. I had tenderness above and around my ears, and on top of my head on the scalp. I had a lot fatigue in my jaw muscles when I was chewing, and also pain in my cheekbones. I also had PMR stiffness and pain for several months before the GCA symptoms started. I had stiffness and pain in my neck, shoulders, and hips. I couldn't raise one arm above shoulder level.

Did the higher dose of prednisone resolve the pains you were having? If it did, that's a good sign you do have GCA.

Thank you. Your summary here is very helpful to me as I just did my third injection of Actemra. No issues so far and I’m at 4 mg prednisone. I like the adequate cortisol level comment. Gives me a guideline and possible timeline of my next year. 👍🏻☺️

I think it mostly depends on the duration of time you have been on Prednisone. I was on Prednisone for 12 years to treat PMR. I lost hope of ever tapering off Prednisone. I got conflicting advice about taking prednisone for the rest of my life. I mentioned this to my rheumatologigist who said I was "too young" to take prednisone for the rest of my life and 12 years was already too long.

The endocrinologist I saw said nobody should take Prednisone for years like I did. However, if I needed Prednisone to treat my autoimmune conditions there was nothing she could do.

I still needed 15 mg of Prednisone the first time I saw the endocrinologist. She referred me back to the rheumatologist to see what could be done. It was approximately a year later that Actemra was tried.

I hope Actemra works for you. I haven't been able to stop Actemra yet but I feel like I will be able to stop Actemra eventually. At least I'm off Prednisone. Actemra is easier to stop as long as PMR stays in remission. Actemra doesn't suppress my adrenal function.

Thank you again. I was wondering how long I could stay on Actemra but I guess it depends on various levels they measure. I’m just glad they seem to be treating this condition now whereas when I went to Mayo over 3 years ago it was only prednisone that they prescribed which becomes a viscous circle. So I have hope. 👍🏻☺️

Prednisone isn't the only option anymore but it is still the least expensive. There are other options.

Kevzara was FDA approved for PMR on Feb 28th 2023.
https://www.the-rheumatologist.org/article/fda-approves-sarilumab-for-the-treatment-of-adults-with-glucocorticoid-resistant-pmr/
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Actemra was FDA approved for GCA back in May 2017
https://www.fda.gov/news-events/press-announcements/fda-approves-first-drug-specifically-treat-giant-cell-arteritis
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"Several FDA-approved biosimilars to Actemra (tocilizumab) are available for treating Giant Cell Arteritis (GCA). These include AVTOZMA (tocilizumab-anoh) from Celltrion, Tofidence (tocilizumab-bavi) from Biogen, and Tyenne (tocilizumab-aazg) from Fresenius Kabi. All three are indicated for adult patients with GCA."
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Rinvoq was FDA approved for GCA about a month ago!
https://news.abbvie.com/2025-04-29-RINVOQ-R-upadacitinib-Receives-U-S-FDA-Approval-for-Giant-Cell-Arteritis-GCA

Was your biopsy positive?