PMR and possible GCA - unable to take oral steroids - alternatives?

Actemra (tocilizumab) works well for me. Actemra is available as a monthly infusion which I have done for the last 3-4 years. I originally got off Prednisone doing weekly injections of Actemra but I switched to a monthly infusion at least 3 years ago.

I was diagnosed with PMR almost 20 years ago and I took Prednisone for 12 years before Actemra was tried, My rheumatologist had to get authorization to give me Actemra to treat PMR. There were some questions about "possible GCA" but my rheumatolgist didn't make the case that I had GCA. I doubt GCA would have ever developed because I needed so much Prednisone for a very long time,

The request to treat me with Actemra was approved with the stipulation that my rheumatologist treat me with Actemra "as if" he was treating GCA.
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By the way ... GCA isn't the only autoimmune condition that can cause blindness, I had a long history of recurrent uveitis which can also cause blindness, I had frequent visits with an ophthalmologist because of more than 30 flares of uveitis ... I lost count at 30. My ophthalmologist would often reassure me that he didn't see any evidence of GCA.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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Typical giant cell arteritis symptoms include headache, scalp tenderness, jaw claudication, and polymyalgia rheumatica. Ischemia induced by the arteritis can lead to blindness.

With uveitis my entire eye was being attacked by my immune system and was inflamed.

I had undiagnosed PMR for about 6 months before I developed symptoms of GCA. The GCA symptoms increased over several months before I was diagnosed. My GCA symptoms were low grade fever, night sweats, pain in my cheek bones, tenderness around my ears and on my scalp, and jaw claudication (fatigue in the jaw muscles while chewing). I ended up going to the emergency room because of a temporary smearing of the vision in my left eye. While I was at the hospital blood tests showed elevated CRP and ESR. The doctors made a tentative diagnosis of GCA and started treatment immediately. They also did a temporal artery biopsy that came back positive after several days.

I was diagnosed almost 2 years ago. There are scans that are becoming more common for GCA - ultrasound and some others that can check for large vessel involvement.

I was treated with prednisone and then additionally Actemra starting 6 weeks later. I still take Actemra self-injections weekly, but I finished prednisone 6 months ago. It sounds like your wife could take monthly Actemra infusions to treat the PMR and possible GCA if it is diagnosed. But Actemra can take up to 3 months to take full effect. Hopefully your doctor would have some ideas about how to treat her in the meantime until the Actemra takes effect.

@jeff97
Thank you for sharing. She has an appt. This week with her rheumatologist and I will shall this with the MD. I am surprised that the MD didn’t order a scan for GCM as she was told my wife had a really bad headache a few weeks ago before the extreme painful
Symptoms of the PMR.
I’m also surprised she didn’t refer to a neurologist or ophthalmologist.
This is very new and really don’t know much at all, but we’re very nervous as you may know.
Thank you replying, we know more today thanks to you.
I’m not sure how I could keep you posted but thank you very much
And glad to hear you’re dealing with it well.

@dadcue
Thank you for sharing your history. It’s reassuring to hear that it’s manage. My wife has an appt. This week with her rheumatologist and we will discuss this info.
My wife did not take the methotrexate as she read it really wasn’t helpful for PMR or GCA
She will tell her doctor this week.
The PMR symptoms have subsided
With the one injection of triamcinolone acetonide that the MD gave on Feb. 4th. Because she can’t take the prednisone by mouth and she was miserable with pain, but MD prescribed methotrexate
Has anyone spoke to you about methotrexate being useful?
she thinks she feels subtle signs of GCA, so she will ask for a scan or whatever test to check for that.
My wife is wondering if it’s possible that she had this one time debilitating flare of PMR and maybe never again. One could hope.
You’re very kind to take the time to share your information
I’m feeling good that it can be managed and I hope wife will get the treatment and testing needed for the GCA.
Thank you again

@boogieman61
"My wife did not take the methotrexate as she read it really wasn’t helpful for PMR or GCA."
and
"Has anyone spoke to you about methotrexate being useful?"
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Be careful about coming to conclusions based on what other people say about some medications.

I was on methotrexate for more than a year before I stopped taking it. It was my choice and my rheumatologist wasn't too happy about me refusing to take it. She seemed to think it was working well for me.

My rheumatologist wanted to increase my methotrexate dose when I was telling her it was making me sick. When I stopped methotrexate, my rheumatologist wanted me to restart it because she could give me something to prevent nausea except it was more than nausea. I gave methotrexate a second chance but I was retching before I was able to swallow it. I think I had an aversion to oral methotrexate. My rheumatologist said it might be better if I took methotrexate by injection.

I never tried the injection however it is very common to develop an aversion to oral methotrexate (MTX) due to nausea, leading to anticipatory retching, where the body reacts before even swallowing the pill. Switching to an injection is a well-regarded strategy to overcome this.

I think methotrexate is one of those medications where it works for some people and doesn't work for others. I took it a long time and it was probably working except for the "nausea."
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I was glad I took methotrexate. When the authorization request for Actemra (tocilizumab) was submitted it stated that "every other treatment option including methotrexate had failed" and Actemra represented my "best hope" of ever getting off prednisone.

My rheumatolgist didn't "guarantee" Actemra would work. He said I wouldn't know if Actemra worked or not unless I tried to see. At the time, in 2019, certain people weren't very supportive of me receiving Actemra for PMR. They said prednisone was the "only option" and I should take prednisone for the rest of my life.

@boogieman61
I hope your wife keeps feeling better, and also that the rheumatologist will provide a treatment plan that works with her other issues. You can update us if you want by replying to these posts and including our usernames like @jeff97. That way we will get an email to let us know you replied.

I am sorry to hear that you are dealing with this collection of issues, which sounds a bit more difficult than average. Granted, most of us are carrying around other medical issues by the time we get old enough to be at risk for PMR and/GCA.

Prednisone at the low dosage usually needed to control PMR is generally not a strong risk factor for ulcers in the absence of other ulcer risk factors such as smoking, alcohol, NSAIDS, chronic aspirin use, and H. Pylori infection. You might consider consulting with a gastroenterologist about this, as medications like omeprazole can usually heal ulcers in this situation.

Additionally, high dose steroids are the only meds that can prevent the onset of blindness due to GCA, and can be given intravenously urgently while hospitalized for suspected GCA. If GCA is at all suspected, urgent hospitalization for IV steroids, gastroenterology and rheumatology consultation, and diagnostic testing would be entirely reasonable in your specific situation.

Good luck and get well soon. Please keep us posted.