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How often does PMR progress to GCA?
Polymyalgia Rheumatica (PMR) | Last Active: Nov 2 9:39am | Replies (128)Comment receiving replies
I had PMR for 6 weeks before I developed symptoms of GCA (temporal pain, swollen temporal arteries, and jaw pain (claudication) with chewing or opening the mouth wide, which is due to inadequate blood flow to the muscles involved. The jaw pain was the worst, could not eat solid food. It even woke me up at night. These GCA symptoms came on quite suddenly, over the course of an hour or 2. From what I have read, having jaw pain increases the chance that vision loss may occur. I never experienced any transient vision loss.
My ESR and sed rate were within the normal range when I had them done 3 days later. (I was not on prednisone, never went on it for the PMR). I was sure I had GCA but my GP wasn’t quite on board due to the labs. I insisted on going on prednisone 40 mg, had a temporal artery biopsy 3 days later which was positive. Had to increase prednisone to 60mg after 5 days due to return of jaw pain.
I sure hope you won’t ever get GCA. If you have symptoms though, especially visual or jaw pain, don’t wait, get medical help as soon as possible. I was probably lucky to not lose vision. I applaud you for educating yourself on this. Patients need to be their own advocates! All the best to you.
Replies to "I had PMR for 6 weeks before I developed symptoms of GCA (temporal pain, swollen temporal..."
Wow. I’m happy to hear you didn’t lose vision. If I am traveling and it comes on suddenly (symptoms) would you recommend taking 40-60 mg pred until I can get to a doctor? I have PMR and want want to do a sailing trip in the BVI but worry about GCA hitting me suddenly.
Hello @julie4868 I’ve been having all the GCA symptoms along with PMR. In July I went to the ER with an extremely headache on the left side of my temple, very sore scalp, I was feeling very ill. They did blood work and a CT Scan. My sed rate and C-Reaction came back slightly over the normal range and the doctor said I had some inflammation in my body but nothing to be concerned. The headache got a little better until the end of September and still too this date. I’ve seen my PCP about 4 times since, she keeps saying that if it was GCA I would’ve lost my vision by now. Well, my vision has been blurry on and off, so I told her and she referred me to an ophthalmologist. Thank God, I have an appointment tomorrow to check my vision and have an appointment with a rheumatologist on Wednesday, Nov. 22nd. I just want to find out what’s wrong with me. My neck is very stiff, my upper back hurts, my scalp, my temples, jaw, when chewing even my tongue gets extremely fatigued. My head hurts just by touching the pillow. I’m very scared, especially that GCA can cause blindness but can’t wait to find out to get treated. Also, my eyes are getting extremely dry. Have you heard if eye dryness can be a sign of GCA?
I’m so glad you pushed the issue with your doctor. My husband’s rheumatologist didn’t believe he had GCA even though he had PMR and all symptoms of GCA except vision loss. We weren’t about to wait around so I made call after call and was that squeaky wheel. Was able to finally get the doctor on the phone, while watching my husband going downhill very quickly. That’s when she said she didn’t think he had it. I pushed the issue hard and she finally (reluctantly) agreed to a temporal artery biopsy. Three days later we had an official GCA diagnosis. I knew immediately because the guy who did the biopsy said he saw inflammation in my husband’s artery. I called the doc again and she finally agreed to increase his prednisone. Unfortunately it wasn’t enough and we ended up in the ER with 3 days of 1200 mg of methylprednisolone IV infusions. I didn’t even know a person could take that much.
At the end of the day his doc who didn’t believe us now says he has the most severe case of GCA she’s seen. She thought he might have cancer and fortunately that has been ruled out.
We have an appointment with the chief of rheumatology. If we like her we’re changing doctors. His current one could have cost him his vision or even his life.
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Hello @julie4868, Welcome to Connect. Thank you for sharing your experience with GCA. You are so right about being your own advocate when it comes to your health.
How are you doing now with your GCA, is it in remission?