How do I get my Rheumatologist to listen ?

Reactive arthritis was diagnosed 20 years before PMR was diagnosed. The main reason PMR was diagnosed was because I couldn't lift my arms without shoulder pain. That was something I had not experienced before. My rheumatologist first asked me if I had joint pain or muscle pain. I was unable to answer because I couldn't distinguish where the pain was coming from or what was causing the pain.

The next question was whether or not the pain was anything I had ever experienced with reactive arthritis. I immediately told my rheumatologist the shoulder pain was completely different. That was basically how PMR was diagnosed.

The difficulty I had being diagnosed with PMR was that I was already taking prednisone. My rheumatologist wanted me to stop prednisone so she could assess my symptoms when I was off prednisone. I could only stay off prednisone for a couple of days but my rheumatologist saw what she needed to see. She said I had both PMR and reactive arthritis. There were two rheumatologists who were evaluating me at the same time. One rheumatologist thought it was a flare of reactive arthritis and didn't want to prescribe prednisone. The other felt strongly that I had developed PMR in addition to reactive arthritis and reluctantly said I would need prednisone for a long time.

Some scans will show where the inflammation is but people with any type of spondyloarthritis will have inflammation in similar places as PMR.
https://rheumatology.org/patients/spondyloarthritis
Except for the spine, most patients with PMR will have inflammation in shoulders and hips rather than the spine.

It takes time for the damage caused by inflammatory arthritis to show up. In the beginning, it is hard to differentiate between PMR and spondyloarthritis. It is common for people who were diagnosed with PMR to have their diagnosis changed to spondyloarthris later on. The reverse is also true, people with spondyloarthitis have their diagnosis changed to PMR. Much of this is determined by age until the arthritic damage starts to show up.

The diagnosis isn't as easy as people think. A rapid response to prednisone is one criteria for PMR but spondyloarthritis and late onset RA (LORA) responds the same way to prednisone.

I think you might have PMR but my opinion doesn't count for much. I'm not a doctor. However, I wouldn't want you to go down the road of long term prednisone use either.

I just hope your rheumatolgist gets it right before prescribing prednisone for PMR. IF your IL-6 level is elevated that might be more evidence for PMR. With any luck you might be treated with Actemra or Kevzara instead of prednisone.

diagnosis is a gordian knot of symptoms for all of the skeletal inflammatory /immuno based diseases. I don’t envy Rheumatologists trying to target the most accurate combo of symptoms and treatment. I never felt fortunate I have straightforward RA until I was introduced to all of the similar but complex maladies here. I was aware somewhat of PMR because my early symptoms included shoulders and hips. But I’m genuinely sympathetic to those of you continuously chasing illusive relief. ❤️

I think much was learned from people in the past who had RA and were treated with prednisone. I'm grateful for those people simply because they were the ones who went through the research trials until better options were eventually found.

I don't know what to think about the current state of research into better treatment options for people with PMR. The idea of taking prednisone and waiting until PMR burns itself out seems somewhat obsolete to me. I understand the reasons why I took prednisone for as long as I did. However, I seriously doubt some cases of PMR will ever burn out entirely.

PMR seems exactly like what I was told originally about reactive arthritis. I was told reactive arthritis could be short-lived and only happen once, it could start recurring and god forbid, it could become chronic.

Even people with the various types of spondyloarthritis have benefited of the experiences of people with RA. The treatment is basically the same as RA. I don't know why Humira didn't work for me and for now at least, Actemra does work. I guess the trial and error approach to treatment is still the only approach. Either that, or many people with PMR have inflammatory arthritis or possibly both.

The problem is that most of these complex maladies aren't well defined. Any diagnosis seems to be nothing more than an "educated guess." I just don't want prednisone to dictate every aspect of my life any longer than it has already.

I get that. And I try not to think whether I could justify another three week course of it for my persistent rib and diaphragm pain 🙂 I think that’s the definition of recreational (kidding).

In a self-deprecating way, I told my rheumatologist that I was a "prednisone junkie."

I remember when I was on the verge of being blind in one eye while on 100 mg of prednisone. I told my ophthalmologist that I "didn't care" if I ended up being blind because I felt great!

There was another time when I asked my rheumatologist why prednisone wasn't a "controlled substance." She said that was why I shouldn't "self medicate" with prednisone and to "use prednisone as directed."

This all happened a long time ago before things deteriorated to the extent that I had to get off prednisone.

I still hear prednisone "calling me"once in a while especially when I can't explain why I still have pain. When someone asks me how much pain I have, I say about "3" on average for the "normal" pain. Then I say "0" for the "abnormal type of pain."

In a self-deprecating way, I told my rheumatologist that I was a "prednisone junkie."

I remember when I was on the verge of being blind in one eye while on 100 mg of prednisone. I told my ophthalmologist that I "didn't care" if I ended up being blind because I felt great!

There was another time when I asked my rheumatologist why prednisone wasn't a "controlled substance." She said that was why I shouldn't "self medicate" with prednisone and to "use prednisone as directed."

This all happened a long time ago before things deteriorated to the extent that I had to get off prednisone.

I still hear prednisone "calling me"once in a while especially when I can't explain why I still have pain. When someone asks me how much pain I have, I say about "3" on average for the "normal" pain. Then I say "0" for the "abnormal type of pain."

I am considering having a sinus lift and bone graft in service to dental Implants down the road when bone gets solid.

In the surgery they give decadron to control swelling. I asked if they ever use Prednisone and his answer was no because that suppresses the immune system.

He must have missed the day when they describe decadron as a steroid aka immunosuppressant. 🙄

Do we have a thread anywhere about that pain scale? How do I even answer that question? I was raised to tough it out so to say anything is above a 3 feels like I'm being a whiner. I'd much rather have them ask me some very real questions about how much the pain is impacting my life.

Do we have a thread anywhere about that pain scale? How do I even answer that question? I was raised to tough it out so to say anything is above a 3 feels like I'm being a whiner. I'd much rather have them ask me some very real questions about how much the pain is impacting my life.

As a nurse, I asked the "rate the pain on a 1 to 10 scale" all the time. I would say 9 out of 10 patients said the pain was a "10." I reminded patients that 10 was the worst pain they had ever felt in their life. If you are hospitalized and want something for pain you better rate your pain at least a "5."

Pain is subjective but a "3" is tolerable in my interpretation. It is "normal baseline pain" to me.

I hear you about asking a real question about pain. For PMR, I usually brushed aside the numeric pain scale question in favor of a "relative age scale" For example, I would say that I felt like I was 100 years old when I was only 60 years old. To capture the amount of stiffness along with the pain, I would say rigor mortis was setting in.

I don't think that "no pain" is a realistic goal. That's one reason why I separate pain into "normal pain" and "abnormal pain." I understand that any pain is abnormal for many people. When we have an autoimmune disorder, that pain falls into the abnormal category. In case someone didn't understand--- I would explain that the autoimmune pain happened for no reason at all.