Probably PMR Waiting to see Rheumatologist

Good research on your part. Actemra would be indicated in your situation but insurance may need
documentation to get approval.
Know your inflammatory lab numbers and monitor
your BP as well. Your IL-6 level can be tested at a referral
lab. ESR and CRP values can point to the diagnosis
if taken before steroids were started.

@seniormed Thank you for the info. Yes, ESR and CRP values taken before steroids were started. Both were elevated ESR 55 CRP 88. Everything else RF, ANA, MCV antibodies, CCP autoantibodies, uric acid all negative/normal. CBC and CMP normal results (for me). Typical stiffness/pain pattern for PMR - shoulders, neck, hands, hips, worse in the morning, sometimes doesn't feel better until late afternoon.

I have seen on this site , that is the extent of my knowledge on Actemra, but it can take 4-6 weeks to start working. I have also seen some relief that is patient dependent on some of the RA drugs. Research LDN.

First there is a national shortage of Rheumy's. Every long Covid problem is an auto-immune problem and that puts it in the Rheumy's wheelhouse. That said I really like the NP that my Rheumy has - she is great, explains a lot and really listens as well. BTW - there was a shortage prior to Covid, Covid just made it worse.

I was recently placed on a bio-logic. They initially mentioned Actemra, but I discovered that in 2026 the Formulary lists were changing. Actemra lost its patten and Tyenne is the bio-similar drug that is now on the Formulary list. Bio-similar is the generic form for bio-logics. Just wanted you to know jic they go that way with you. I am now using self-injectables at home and not going to an infusion center for my weekly Tyenne treatment.

Each journey is a little different and the decisions are yours.

I also had an insightful ER Doctor get me on prednisone (the short pack). And as you said, it gave me a lot of immediate relief. I also could not see the RA for some time, so I get your concern for sure. Once I did get an RA appt., and PMR was suspected through C-Reactive and Sedemtation Rate tests, I was put on a a dosage of one dose one day, and a lower dose the next. repeated each/every other day. The Doctor had me take another set of blood tests and it showed the inflammation was in the normal range. He was repeated this type of dosage cycle through the months, and I currently take 7.5 one day, then 5 the next. I have had some flare-ups, and a persistent numbness in my thigh, but I am heading in the direction that I am aiming for. I have severe osteoporosis, and the Doctor ordered an infusion to counter the Prednisone's bone wasting. IOW, I am looking to bear more with some of the flare-ups than to increase the Prednisone. I listen though to my Doc and do not do it on my own. Long and short of it is that the alternating tapering is helping. I feel for you. May you be Blessed with a good solid plan that incorporates diabetes and all that comes with it.

Hello @cshep, You might find the following discussions started by Mike @dadcue helpful:
-- Glucocorticoid-induced Adrenal Insufficiency: https://connect.mayoclinic.org/discussion/glucocorticoid-induced-adrenal-insufficiency/
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.: https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/

Another comment I will make is to warn you about thinking that CRP and Sed Rate are used in the same way that blood sugar numbers are used in managing diabetes. Most all of Endocrinology is truly by the numbers, this concept does not port in the same way to managing autoimmune problems. I had PMR and was accustomed to managing thyroid problems with my Endo - she is strictly by the numbers. My Rheumy wants to know how I feel, times of day the pain exists and much more subjective information and what I would call touchy-feely symptoms. Many people have PMR and do not have elevated inflammatory numbers at all.

@jabrown0407, Definitely understand this. I also have thyroid issues and most doctors treat thyroid problems by lab values alone and don't seem to concern themselves with how you're actually feeling. ; ) In my 52 years of living with diabetes, I have come to the conclusion that it is just as much an art form as it is a science...so many variables to juggle daily.

Hi @jabrown0407. Yes. I’m so aware of the shortage of specialty care doctors. Just read an article this morning on a shortage of PCP’s in Massachusetts. They’re using AI to screen patients to determine if they need to be seen or if their issue can be managed by telehealth or a messaging system. Scary times for anyone who dares to get sick.

@johnbishop Thanks for the information. Interesting how different doctors/patients approach tapering.