How often does PMR progress to GCA?

@charlotte61

It was very aggravating. I feel we're on the right path now with our new rheumatologist, new endocrinologist and physical therapist. They're all connected through our medical plan so they can see what the other is saying, tests they're ordering, results etc. Which has proven very helpful.

I'm sorry to hear you keep getting symptoms if you go under 10 mg but prednisone can be a lifesaver and a necessary evil. It's good you know about the bone issue with this drug so you can try to avoid your osteoporosis from getting worse because of it. Good luck!! I think you should find a rheumatologist for the PMR. Do you have an endocrinologist for your osteoporosis?

@nancy53

Thank God is right! I'm so glad you didn't have it. I think your decision to go to the ER was a good one. I too would have declined morphine.

I'm only seeing my GP and my naturopath for my PMR and osteoporosis. I'd be on a loooong waiting list for any rheumatologists or endocrinologists in my area -- if they're even taking new patients at all.

I'm glad you're on the right track now with your husband. He's lucky to have you to advocate and fight for him!

@charlotte61

I'm happy to hear you have a naturopath. I lost mine (she moved) and would like to find another one.

Sometimes being added to a long wait list is worth the wait. Time flies and before you know it you might have an appointment. I think it might be worth trying. At this juncture, with the issues my husband has, I can't imagine doing this with just my GP and even if we still had our naturopath. Each of these doctors has something to offer that the others don't. I've learned through all of this how much doctors don't know. Sadly. .

Maybe you might look into Medjet- personal emergency flights out of vacation areas.

Had a biopsy of arteries, left and right in front of eyes , checking for GMA. I WAS ON 60 mg. prednisone for 2 weeks beforehand. The biopsy should be done before prednisone treatment,

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.

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.