Newly diagnosed

yes. many of us were diagnosed without elevated CRP or Sed Rate. For me after months of pain, 20mg equiv. of prednisone fixed it in 4 hours. Like nothing ever happened. I then was able to move to 10mg in the first 2 weeks and was at 10mg for the next 5 months. Tapered off in month 6. I did have an elevated HS-CRP. My Dr insisted this had nothing to do with PMR. I have since read HS-CRP can be an indicator.

Hi @buc153, I would like to add my welcome to Connect along with @tuckerp and others. I thought you might find the following discussion helpful to connect with others mentioning normal labs with PMR.
-- PMR with normal labs and having severe thigh pain: https://connect.mayoclinic.org/discussion/pmr-with-normal-labs-and-having-severe-thigh-pain/

You might also like to scan through other discussions and member comments on "PMR with normal labs" - https://connect.mayoclinic.org/search/discussions/.

Yes. Promptly responded to 20 mg of prednisone within 6 hours. ESR, CRP, all rheumatic disease blood markers and lab tests were and have remained normal/negative. Took 18 months to taper off prednisone due to relapse at the 5 to 7 mg level. Unfortunately developed giant cell arteritis one day after finishing prednisone so am back on prednisone. This has been an unpleasant experience, but fortunately I am functional, can walk, swim, exercise, lift weights, read, drive, bike ride, and have not suffered vision loss. For that, I remain thankful. Good luck to you on this journey.

At this point in my knowledge of this illness I have a few thoughts that may be helpful. Firstly, PMR does not cause permanent joint or muscle damage, but giant cell arteritis (also called temporal arteritis) can cause permanent vision loss if not treated urgently with high dose steroids (usually prednisone 40 to 60 mg once a day, and rarely hospitalization for IV corticosteroids). So be on the lookout for the onset of one sided headaches, jaw pain, pain with chewing, eye pain, and rarely tooth pain (tooth pain is rare, I only know this because I had this).

Secondly, there is a lot of evidence linking various types of stress (work, emotional, psychological, life, family, financial, relationships, etc.) to the onset of various autoimmune disorders. Stress is something that each of us may be able to have some control over, unlike other factors like politics, the economy, genetic inheritance, sunspots, moon phases, teenagers in the family, etc., (you get the picture). I recently read “The Myth of Normal” by Gabor Mate, MD, and found it helpful in improving some issues. (But it didn’t prevent me from developing GCA, so go figure.)

Lastly, I tried various diets and supplements with no noticeable improvement, so I basically stick to a Mediterranean diet. (I do try to minimize my sugar consumption, but unfortunately the neighborhood Girl Scouts know that I am a regular customer, and cookie season is in full swing. I rationalize this as doing my part to support the local economy 😂.)

Thanks for listening, I’m feeling better already.

Welcome buc153. I am 65 and self diagnosed last July/ August after onset of life altering pain t/o my body. I am dedicated to my strap weight and Swiss ball routine 5 days/week and pm yoga 4 days/week. I was unable to tolerate any of my 20 year program. As a retired P.T. of 40 years, I knew something was really haywire. Upon advising my pcp of my symptoms and , knowing well that I've already done my research, he asked if I thought it was PMR. I said yes and we conferred. He started me on 15 mg of prednisone. He advised that anything over 15 mg/ day would require a .5 mg per month taper and 10 mg or below a 1.0 mg per month taper l. So, me being me, I decreased my initial dose from 15 to 10mg. My symptoms are non existent after 3-4 days! I am maintaining on 10 mg. PCP told me yesterday I'll need to be on the 10 mg for 6 mos before tapering. I am to see a rheumy March 12.
I feel confident of the correct diagnosis and treatment. As for initial bloodwork, my ESRwas normal and C-reactive protein was 28 ( 0-10 wnl).
Yesterday's blood draw has my ESR down and C-reactive is now 9! PTL!
I hope your journey is smooth. I pray you have a health care provider in your corner 🙏 I have learned from many in this forum and others outside, this is a tricky rheumatic disease. Diligence and persistence pays off. As for diet, I have been a "vegetarian" since 1989..I do eat any seafood 1-2× per week and foul about 7-8 times per year. Otherwise, minimal dairy, yogurt, cottage cheese, occasional cream in coffee. Very low refined sugar. Lots of fruit and veg. That didn't prevent my predisposition for rheumatic diseases. I also have Raynauds since 1976 and Graves disease ( in remission) since 1990.
Hopefully this info helps with your navigation of this crazy disease.

@mark2471 Your list of GCA symptoms is good. I had fatigue in my jaw muscles while chewing, low grade fever, weight loss, night sweats, pain in my cheekbones, and scalp tenderness, plus vision problems.

@jeff97
Thank you. Happy to be of assistance.