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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 has an increase in headaches, temple pain, and some jaw discomfort and tightness. The doctor was going to do a tempoal artery biopsy, but due to operating room issues, we ended up doing an ultrasound of my temporal arteries instead. The left side was “suspicious” for GCA. 🤷♀️ I had been on 60mg of Prednisone for a few weeks already.
Biopsy is the gold standard to determine GCA. But That didn’t happen for me.
I was put on 60mg of Prednisone daily in April 2024. It was awful. My rheumatologist has now got me on Actemra which is approved for GCA…. I have had 4 injections.
I’m weaning off Prednisone (currently at 2.5mg), and still have some muscle weakness/stiffness/pain/hand and arm tingling in the mornings, but it is tolerable.
I was hoping the Actemra would help more with the PMR symptoms, but as long as it’s keeping the GCA at bay, I’m okay. 👍🏻 the problem is, I’m just assuming the Actemra is working because there is really no way of checking the GCA, that I’m aware of.
Perhaps they do another ultrasound or an actual temporal artery biopsy, I don’t know yet.
So, rolling with the punches for now and will wait to see what the rheumatologist says down the road.
Just pay attention to your body. My doctor said if I get a severe headache or have vision issues to go to the ER. I also carry 60mg of prednisone with me everywhere, to take should I have an emergency.
Good luck to you. This is quite a punch in the gut to life… and just when I was getting in good shape working out! It’s a bummer for sure.
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I just wish to say that Actemra should help with PMR but it takes time. I took prednisone for more than 12 years for "refractory" PMR. It took me a year after starting Actemra but I eventually managed to get off Prednisone completely. I have been off Prednisone almost 5 years but I still do a monthly infusion of Actemra.
Unlike Prednisone ... I don't seem to have any side effects from the Actemra infusions. My ESR and CRP increase whenever I go more than 6 weeks between infusions. My pain and stiffness also gradually increase whenever I go too long between infusions. My symptoms on Actemra aren't like an acute flare that I had whenever my Prednisone dose was too low. I could probably tough it out and stop Actemra but my rheumatologist says my inflammation markers increase significantly so that warrants a continuation of Actemra even though my symptoms aren't that bad.
Most of my Prednisone side effects have resolved. I was taking approximately 7 other medications that were treating Prednisone side effects. In addition to stopping Prednisone all those other medications have also been stopped.