Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Now 1 week in to the Rinvoq and the pain is better. Not completly gone but noticibly better. My legs muscles have a lot of rebiulding to do and they fatigue easily. Soon I will start PT and hopefully that will help. I will see my rheumatologist late October and we will have a lot to talk about. Wouldn't it be something if Rinvoq handled PMR pain?!

Do you mean you had a blood draw and the doctor never got the results? That seems like a mistake on the part of the system. But I had a sort of reverse situation the first time I got PMR. When I explained my symptoms my PCP said "I know just what you have. We'll get a blood test and you can start treatment right away." But the blood test came back negative, so he sent me to a Rheumatologist who said. "I agree with Dr. X. Let's take another blood test." He reported it not only came back negative, but it wasn't even close to what you would expect for it to be PMR. But despite that, he prescribed prednisone and said we would go by whether it worked or not. It did. About 5 years later it came back. This time the blood test agreed.

No, the results came back un the under edge of what makes diagnosis definitive. My symptoms however are classic. I'm naturally a very limber person, and still, at 79 working a physical job. woke up not being able to raise my arms t even shoulder level and bending not fat enough at his to be able to reach knee level. Husband had to lift my legs in and out of bed. A long time friend's (retired scientist) sister had long covid and I called to ask about that. She told me I had PMR as she had been battling that over a year at that time. I offered my doc that info and he thought I was doing internet diagnosis until I explained that she was a a trained scientist and had been being treated for quite a while. He then consulted a rheumatologist, put me on prednisone and within an hour and a half I was feeling and moving well. it's been up and down, one flare while on meds, still on 7 mgs. Cannot seem to get down to 5 without flaring, glad I'm old less time for the term effects of meds! Just wish I were not so darned unreasonably hungry.

Yes. I think it is the experience that counts and we are losing a lot of experience in the medical field as people retire.
In my case, it came not only below the line but way below the line... yet both of my doctors had been working in the field for decades. My first deferred to the rheumatologist, who said that if wasn't PMR, we'd know it if the prednisone didn't work. I was put on a one-month pack; it started high and then decreased over the next 20 or 30 days. Then I was done and had no more trouble with it for 5 years. This time my test results had moved up and the one-month pack didn't work. So I'm working on establishing a decreasing prednisone dose now, but all is manageable.

Just to say that this group is very helpful. When first diagnosed, a friend referred me to an online support group which was disturbingly filled with people making dosage suggestions, diagnosis etc. There seemed to be no oversight, and did not feel like it was a safe placer anyone without at least some medical common sense and knowledge. Having been a complimentary care (massage therapy) professional, and teacher for 50 years, and understanding and respecting scope of practice , I just left within a couple of days. This group is well moderated, and the posts are interesting, whether seeking information offering information. I am very grateful to all of you.

Has anyone experienced depression with PMR? Having lost my husband in May, I cannot sort out what's what. Am doing okay, but am isolating a lot.

So sorry to hear about your loss. I can't imagine what you are going through. I think it would be reasonable to atribute what you are dealing with to your personal situation and not the PMR. Mainly, because the pred is usually uplifting to most of us. But we are all different and I hope you have someone trained you can talk to. And please stayed "tuned in". We do care and are there for you.

I had depression from the Predisone. I had lots of side effects.
It lasted for a couple of weeks.

Suetex,
Thank you. Yes, I do talk to a therapist about every 8-10 weeks. There are a lack of therapists in y health plan and I try to use what I need. Guess it has just been a overly trying time recently. Glad to hear that it is likely not the prednisone, as this lates optic was not there earlier on, it isa reassuring that it is something I can deal with.

Thank you. As this feeling is more recent and I have been on prednisone forever 6 months, you helped me figut=re out that it isn't my meds.