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How often does PMR progress to GCA?

Polymyalgia Rheumatica (PMR) | Last Active: Mar 29 2:47pm | Replies (115)

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@charlotte61

Hi Isabelle -- thanks for your post, and so sorry you've had to go through so much aggravation trying to get a diagnosis and proper medication protocol for your husband. It scares me how little doctors know about PMR and GCA, and I often worry that if I ever develop symptoms of GCA, the doctors at our ER won't listen and will dismiss my concerns. I'm not the kind of person who likes confrontation, but it seems we have to be downright aggressive at times to get the attention and treatment we know we need. At least my GP is aware of the dangers of GCA, and its connection to PMR, to be aware of the symptoms and try to get attention promptly. I hope your husband will soon start to feel a lot better!

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Replies to "Hi Isabelle -- thanks for your post, and so sorry you've had to go through so..."

Yes. If you develop some or all of these symptoms (headaches tender scalp, jaw pain, pain when chewing or opening mouth wide, low-grade fever, any vision changes including blurry vision, loss of appetite, weight loss and generally feeling unwell) the first thing is to go to the ER and have labs to check inflammation, followed by an MRI of the brain and CAT scans of the neck, abdomen and chest to rule out other things. Then get a temporal biopsy scheduled ASAP but do not wait for results to increase dose of prednisone to at least 40-60 mg per day to prevent vision loss and stroke (my husband had to have 80 mg after three days of 1200 mg IV infusions of methylprednisolone.) That happened at the ER. I wish I’d known all of this when he developed the symptoms and no one thought he had it. I had to raise h%#* to get their attention. What got their attention finally was when I said he has PMR and now has all the symptoms of GCA except blindness and I’m not willing to wait for that to happen because no one wants to believe us. That’s when the doctor said if he gets another headache to go to the ER. Which we did in the middle of the night. The doctor there said he was not being treated properly for his condition and immediately started the IV infusion. He has a severe case that did not start to get better until they put him on 80 mg. That was almost 2 weeks ago. As of last week his inflammation went down a little but not as I expected after having those infusions. We go back Monday for more labs and await results for another set of CAT scans of his neck, chest and abdomen. The rheumatologist is not happy with the ones done at the hospital. Evidentially didn’t cover all she wanted it to. She’s looking for the possibility of something else going on with the GCA. She said it could even be cancer. which freaked me out. And so we wait. At least with the increased Prednisone he's not at such high risk or losing vision or having a stroke. I hope this helps.