How did your PMR begin?

The reason I'm taking it very slowly is due to also getting GCA three months after diagnosis for PMR. We all know the consequence of GCA. It can cause sight loss quickly too. I know a few that have lost sight in one eye and one lady in both. So you can understand my concern. Many with PMR have been taking it for yrs and yrs due to flares. That could be due to the fact they have tapered too quickly by too much of a decrease. I was reducing by 1mg per month but still experienced flares, so decided to try it by 0.5mg and so far so good. So by this December hopefully, I will be on 1.5mg. Just hope my adrenals have started to produce the cortisol we all need as we taper. I will request the ACTH test on my next appt with Rheumy. I also think the slow taper helps the adrenals to wake up. That will be exactly three years for me. I was told between one and two years. Those that manage that period and earlier are very lucky.

Yes, my husband was ill.

How did your P.M.R. start? My P.M.R. started when my Doctor advised me to stop Arthrotec for arthritus with in 36hr my neck became very
Stiff shoulders became very sore, my hands and feet became very swollen, i could not grip even a coffee cup . I could not wear shoes or slipper on my feet they where very swollen.

I think there is an connection PMR and the use of statins.

At least, in my husband’s case there couldn’t possibly be a correlation because he’s not on any. Actually, until PMR showed up at age 65 he was in perfect health with not one drug.

Welcome @sirmac. The exact cause of polymyalgia rheumatica is unknown, but a combination of genetic and environmental factors is thought to be responsible. Conditions without a cause are frustrating.

@ctjpmarie asked the same question about how PMR started for members, so I moved your question to this existing discussion:
- How did your PMR begin? https://connect.mayoclinic.org/discussion/how-did-your-pmr-begin/

I did this so you can read the "start" storied of fellow PMR members and connect with them easily.

What treatment is your doctor suggesting?

Can you expand on that, provide a source? There are millions upon millions of people on statins and any connection, causative or associative, with taking statins would I believe be front page news. This is the first time I have seen this allegation.

Thanks!

Unfortunately, our doctors only answer is simply taking steroids with that said, a friend of mine, who actually works at the CDC forwarded to me a Dr., from New Zealand, who supports liberal supplements.

My husband, who is the one who has it has been taking them religiously.

We’re not sure if it’s helped at all but of course, being on steroids things like vitamin D, and all that kind of stuff is very important. So we’re sticking with it.

He’s tried to taper down a couple times but it didn’t work. He’s only had it since last October 22 of course but such a painful condition I’m not saying that lightly.

The good news is that his torso has definitely improved while his hands are still very swollen and painful-ridiculously south that even my cannabis THC infused coconut oil doesn’t seem to help him one single bit. 🫢☹️

IMHO it is a disgrace to our medical system that you had to go to three different doctors to finally get your PMR diagnosed,

I went to Mayo/Rochester in May 2022. That doctor knew it was PMR right away but thought to check on my runaway inflammation & diagnosed GCA the same day. I might have had an aneurysm or be dead today if it wasn’t for her.