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Adjusting to life with temporal arteritis

Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)

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@marmak

Thanks so much for this information. I have been treated for PMR for five years. Tapering doses of prednisone up and down, multiple flare ups. I was down to 2mg, having pain but able to manage with the help of acetaminophen. Stress seems to aggravate it, so during the holidays and extreme cold recently was not surprised that I hurt more. I started getting dull headaches in my right, then left temple, along with stiff and painful jaw, new right neck pain and horrible shoulder and neck stiffness and pain. I never get headaches, several new symptoms for me. Called rheumatologist who told me to come in for a steroid injection. I did, but his nurse gave me the shot and I never saw my doctor. I went on an overnight trip the next day and the following morning woke with slightly blurred vision. Headaches continued. I ended up in the ER, and was diagnosed with temporal arteritis based on symptoms, elevated sed rate and negative for bleed head CT. Gave me 60mg oral prednisone and a script for 60 mg daily in 3 - 20mg doses. F/U with rheumatologist next week. My mom had this, but not PMR. Vision is good today after 1 dose, as are the headaches. Bracing myself for the side effects.

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Replies to "Thanks so much for this information. I have been treated for PMR for five years. Tapering..."

Hi @marmak, I'm so glad you caught the GCA fast. I had symptoms of GCA a few months before diagnosis, and PMR maybe 9 months before that. After biopsy was positive for GCA, I started on prednisone 40 mg, tapering down by 5 mg every two weeks. It went pretty well. I only had to go back up to the previous dosage once when tapering. I've been off prednisone a few months now. I have odd pains here and there, but am much better than what I was.

My worst side effect while on the high dosage of prednisone was insomnia. My appetite returned as I'd been anorexic with PMR and GCA, but I watched what I ate. I also have osteoporosis, but that started before the prednisone.

I wish you the best. My mother-in-law was diagnosed with GCA in her 80s and lived to be nearly 100.