No ... I didn't gut it out! I had the support of doctors who understood the gravity of my situation. I took just as much Prednisone during the 20 years before PMR was diagnosed as I did for 15 years after PMR was diagnosed.

We are talking about massive amounts of Prednisone. For example, I once messaged my primary care doctor that I thought I needed to take 100 mg of Prednisone to quell the electric shocks to my face at a rate of one jolt of electricity per minute. He quickly responded and asked me if I was sure 100 mg of Prednisone would be enough! Those electric shocks were caused by trigeminal neuralgia ... nicknamed the "suicide disease"

I think trigeminal neuralgia contributed to high levels of stress that exacerbated everything else. I have referred to PMR as a "blessing" because I started to receive the attention of many specialists. Until PMR was diagnosed I was "winging it" and self medicated with Prednisone.

The other support I received were the patients I care for in a hospital setting. I had an affinity for any patient who needed Prednisone for a variety of reasons. It was like we were kindred souls or something. In the nursing world ... patients on Prednisone were difficult to manage because they tended to have a plethora of medical problems. Many of those patients were much worse off than me!

@ferret911
your admiration of @dadcue is well placed. He has the strongest understanding by training and personal experience of clinical presentations - varied as they are as anyone in the PMR /RA arena. And he's bloody brilliant.

I spent six years working for a large group of Neurologists focused on diagnostics. So I’m more interested in the data and the research. I spend a lot of my free time reading research design and results. Not because i think I can be my own doc. But in hopes i can ferret out the direction research is taking.

To me, if you want to engage for the benefit of your daughter, focus on patient feedback on docs she has access to. Get the best doc with skills and a heart you can assist in finding. But my advice is that you support, not so much drive.
Finally, in the way of unsolicited advice, I have tried concierge docs twice and won’t do so again. It’s a grand premise that in my experience fails to deliver the superior intellect that presumably underpins the practice. Give me a physician - currently or in their recent history, of providing healthcare in a massive, messy, exhausted but intellectual teaching hospital. No one else is as close to the cutting edge.
Good luck and reach out for support when you need it!

"Did you get therapy, find this group really helpful, or just gut it out?"

On second thought ... I did all of the above in addition to massive doses of Prednisone. I don't ever want to go on Prednisone again unless it is absolutely necessary. People should take Prednisone until they find a better solution. Prednisone should be the bridge to the solution ... not the solution. Prednisone was a very, very long bridge to my solution.