PMR savvy doctors in Portland Oregon

This isn't a recommendation of anyone in particular but this place has several rheumatologists to choose from. As it says in the following link:

"Fortunately, the last several decades of scientific advancements have brought about a new era in rheumatology. Key discoveries in basic sciences have led to breakthrough drug development allowing us to offer patients novel therapies for immune conditions, which had previously been very difficult to treat."
https://www.ohsu.edu/arthritis-and-rheumatology/division-arthritis-and-rheumatic-diseases
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Considering you have been on Prednisone for a very long time and you can't taper off Prednisone, a rheumatologist at a University Medical Center might have some fresh ideas. I was officially diagnosed with PMR in 2008. I went to the University Hospital in my State. When I was offered a novel therapy, it took me a year to taper off Prednisone. My medical records now refer to a "History of decades of prednisone use but currently off prednisone for the past 4 years."

Thank you. When I first was diagnosed with PMR I was treated at OHSU and they quickly diagnosed PMR once I managed to get in. It's not a convenient location for me as I live on the eastside and the Rheumatology Clinic is on Marquam Hill, but it may be worth it. I'm glad to hear that you were offered a new therapy and it worked. If you don't mind my asking, was it Kevzara? Don't feel you have to respond if you don't want to. Thanks again!

you may find an endocrinologist better at helping below the 5mg. Dadcue would know at what point they take over.

My blood tests are never consistent with showing PMR. This has been going on for 7 years and I still can't get off Prednisone. I have all the symptoms of PMR. I also am on the 5 mg. trying to taper but it's not working so far. I have been on Methotrexate since August to help wean off the Prednisone but have been unsuccessful so far. Don't mean to be discouraging but not everyone is a picture perfect model with their blood work, symptoms, etc.

My experience is the pain you have during prednisone taper is less severe than what you deal with during PMR but occurs in same places (shoulders, glutes, wrists hands). A PMR diagnosis is determined through inflammatory markers in blood. Prednisone does an excellent job of suppressing those inflammatory markers. I have seen a rheumatologist, I have not found them to be particularly helpful either. By the time I got an appointment I hade been on pred long enough for PMR to be "gone" but symptoms were still very present. I had what I thought was a PMR flare but it was not confirmed through blood tests. My experience is that diet really contributes to pain and my ability to taper off of prednisone. If I am very careful about what I eat I feel pretty good and as soon as I eat the wrong foods I find that the pain increases. I would encourage you to take a look at inflammatory foods and avoid them as much as possible. It took me a long time to really get a handle on this but for me it has made a big difference in managing the pain.
Good Luck!

I'm also in PDX and have had excellent luck through Kaiser. The rheumatologist I found on second try is named Dr Vandana Khurma. She's busy but her office staff is really supportive and I always get answers quickly.

Kevzara is now an option for me since it was FDA approved for PMR in February 2023. However, I'm not on Kevzara (Sarilumab).
https://investor.regeneron.com/news-releases/news-release-details/kevzarar-sarilumab-approved-fda-first-and-only-biologic/#:~:text=TARRYTOWN%2C%20N.Y.%20and%20CAMBRIDGE%2C%20Mass,who%20cannot%20tolerate%20corticosteroid%20taper.
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There weren't any biologics that were FDA approved for PMR when I was offered treatment. When I started on Actemra (Tocilizumab) in January of 2019, Actemra was FDA approved for GCA. An authorization request was submitted and approved for me with the stipulation that I be treated "as if" I had the diagnosis of GCA. The other indication for Actemra was my being unable to taper off Prednisone and that all other alternatives to Prednisone had failed.

I took Prednisone for 12 years. The rheumatologist that I was seeing felt strongly that staying on Prednisone for the rest of my life wasn't a good option. The belief at the time was that Actemra was my best hope that I would ever get off Prednisone. My PMR was called relapsing and refractory. Now my PMR is said to be in remission. I have been off Prednisone for 4 years and my quality of life is much better than when I was on Prednisone.

Both Actemra and Kevzara are IL-6 receptor blockers. Either one should work for PMR but maybe not for everyone with PMR. It feels good to be off Prednisone.
https://www.actemra.com/gca/considerations/gca.html#:~:text=ACTEMRA%20is%20the%20first%20prescription,ACTEMRA%20is%20not%20a%20steroid.

The 5-7 mg dose of Prednisone is what I call the "adrenal zone" because that is when the symptoms of a low cortisol level start to occur. Prednisone replaces the cortisol that the adrenals produce. The average amount of cortisol the body needs is equivalent to 5-7 mg of prednisone.

As long as we take 7 mg or more of Prednisone, we are less likely to feel the pain that adrenal insufficiency causes. This pain is very similar to PMR pain. The only difference that I could feel was that my shoulders didn't hurt that much when my cortisol level was low. Severe shoulder girdle pain and an inability to lift my arms was the predominant symptoms when I was originally diagnosed with PMR.

The other symptom of adrenal insufficiency that stood out was the overwhelming fatigue that I felt on 7 mg or less. An endocrinolgist said I needed to be on 3 mg or less of Prednisone before my cortisol level could be accurately evaluated. It was also necessary to be able to hold my prednisone dose for 48 hours to get an accurate measurement of my cortisol level. Actemra allowed me to do this. Lucky for me my cortisol level improved but I needed to stay on 3 mg of Prednisone for a long time before my adrenals started to produce more cortisol.

I didn't ever have an adrenal crisis but I would describe the pain caused by adrenal insufficiency as a "pain crisis." PMR may have contributed to the pain of a pain crisis. In many respects the pain crisis was more severe than PMR pain but I thought it was a PMR flare.

Thanks to everyone for your comments and suggestions. I am waiting for a reply from my rheumatologist to a recent message about pain, but I don't see any possible breakthroughs, so I will try elsewhere. I appreciate the Kaiser and OHSU suggestions and will look at both. Since I have been at OHSU before, they may be more likely to take me.

I hope to try Kevzara - I did raise the issue with my rheumatologist but she will not prescribe, since she does not believe I have PMR despite 16 years of being treated by qualified doctors and an inability to taper - I told her I had tried at least 30 times. She suggested Tylenol. I am debating with myself whether it is worth meeting with a medical manager at the facility where she works (or write a letter) to discuss her lack of sympathy for my pain, or whether I should just move on. I would hate to see this happen to others.

My recent tests showed adrenal insufficiency, after I had gone down from 5 to 4mgs. As I mentioned, with 5mgs I still have pain, but can barely make it. 7mgs certainly would erase most of my pain. I'll see what she says about the tests.

The doctor's ability to listen and take the patient seriously is very important. I hope to find a good one.

"My recent tests showed adrenal insufficiency, after I had gone down from 5 to 4 mg. As I mentioned, with 5 mg I still have pain, but can barely make it. 7 mg certainly would erase most of my pain."
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Who did this test? Was it an endocrinologist? Was it an a.m. cortisol level or a synacthen test. I was told the result wasn't valid unless I could maintain a 3 mg dose or less for an "extended period of time."

My rheumatologist and I had developed a good rapport after many years. We were at a similar impasse when I couldn't taper much lower than 10 mg. I could get down to 7 mg but invariably I would increase my dose back to 10 mg.

I was referred to an endocrinologist when I was on 10 mg. The endocrinologist told me there was nothing she could do if I still needed prednisone to control my PMR symptoms. The endocrinologist referred me back to my rheumatologist but she invited me to come back to see her if I could ever taper down to 3 mg. I don't know what happened behind the scenes between the endocrinologist and rheumatologist.

I was adamant that I would NOT make another attempt to taper off prednisone. I wasn't angry about it but I communicated how I felt about it. I wasn't bluffing because I didn't see any way forward that would allow me to taper off prednisone. I didn't think there was any alternative to prednisone. I doubted my prednisone prescription would ever be stopped.

That was the start of a surreal chain of events. How it unfolded is still hard to comprehend. I guess my only advice is don't give up like I almost did.. Now I realize that getting off prednisone was worth it. However, staying on prednisone would have been the easier thing to do.

All to say . . . I can appreciate why you have taken prednisone as you have over the years.