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

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Profile picture for jeff97 @jeff97

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.

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Replies to "I had undiagnosed PMR for about 6 months before I developed symptoms of GCA. The GCA..."

@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.