miss diagnosed???

Hi @rma83, You can have PMR with normal inflammatory markers. Here's more information:
-- Diagnostic difficulties in polymyalgia rheumatica cases with normal erythrocyte sedimentation rate and C-reactive protein values: https://journals.lww.com/md-journal/fulltext/2023/09290/diagnostic_difficulties_in_polymyalgia_rheumatica.48.aspx.

I'm not a doctor but I think just the fact that the prednisone gets rid of the pain is normally an indication of PMR. Have you been seen by a rheumatologist?

Agree with all your comments. For myself this applies. Also I’ve tapered off twice of prednisone only to get the temporal headaches and my hair hurts and scalp tender. So… I started actemra injections and I think I’m having some good results. My scalp has stopped being tender to touch no temporal pain yet less joint pain and will again begin taper of prednisone in about 2 weeks. 🤞🏻I am not yet at therapeutic level of dose so I’m hoping this new injection works to get me off prednisone and relief of PMRs multiple strange symptoms ( no more vaccines for me) and this site has helped me more than you all know. 🙏 Thanks

yes.at the time it was a rheumatologist that diagnosis but changed her mind when a PA started there and convinced her (the Dr) that it couldn't be PMR. That's over 5-6 years ago and I've been through hell since. That's the only RHEU group around here so I will see my ortho surgeon tomorrow and there is another RHEU at U CONN in CT that he can refer me to, hopefully. Thank you for your help, I will look that info up.

Thanks so much for your reply. Both replies have given me the hope I so needed. I will see my ortho surgeon, had knee replacement a year ago, tomorrow and I will try to get my referral. I was starting to think I was alone and your replies have really helped, although it's sad there are more of us around. I will let you all know how this turns out. Thx again!

Yes. It has been around but more prevalent since Covid and the Covid shot. In fact the Actemra I have started is for treatment of long Covid also. Now they got a name for that too. Good luck. I hope you can find a rheumatologist that has a little experience with PMR and is willing to take you through the process of treatment options. 🤞🏻

You deserve the second opinion and there are other more advanced tests
to show inflammation in PMR. Affected joints can be checked with ultrasound
even when they have normal X-rays signs of inflammation may be documented.
The newer labs are IL-6, fibrinogen level, serum Amyloid A and a calculation
from your blood cell count SII ( systemic inflammatory index). Hs CRP and sed rate will be repeated.
The new rheumatologist should do a thorough joint physical and history
Bring all the old lab tests. Don’t be surprised if they try an appropriate dose
of prednisone therapy after the current lab testing..

My PCP offered to treat me at one point. You should also be able to get a referral from your PCP if orthopedic surgeon is reluctant.

You might go back to your original Rheumy. She might have changed her mind again. I find it refreshing when a doctor can be that candid with me. Yes, it's frustrating, but the real goal is to get you pain free so you can get back to the business of living life to the fullest.

I have been suffering for approximately one year with disabling pain in shoulders/arms and hips/thighs.

At first we thought it was spinal because I have fusions at C5/6 and L5/S1. MRI showed some spinal issues but no bilateral pinched nerves.

My EMG was normal. My sed rate and CK were normal.

They took x-rays of my shoulders to see if they had any calcifications and nothing.

Dozens and dozens of blood tests for RA, myositis, Lyme's, and most everything under the sun and really nothing was off. My PC doctor said “you can’t have PMR.”

I could not get an appointment with rheumatology at Mayo and my doctor of the moment refused to do any further testing even though I requested an MRI of my shoulders/arms.

So I went to an orthopedic clinic in Woodbury, MN. They have a Rheumatology dept within the clinic/practice.

My new Rheumatologist agreed to request shoulder MRIs with and without contrast. In less than three days I had an affirmative diagnosis of PMR!

I am doing a burst and taper of Prednisone for a month to get the inflammation down. After I taper I will try other non-corticosteroids.

Please don’t give up. I lost a whole year of my life due to disabling pain. I have hope again that I may be able to get my life back.

I wish they would have done MRIs on my shoulders first and foremost. It would have shown the disease and I would not have had to suffer through the pain and emotional devastation that this year took from me.

There are up to 15 percent of the PMR positive population that never have elevated sed rate or CK. Don’t let them gaslight you and say you cannot have it because your blood doesn’t show it!

I am on Day 3 of prednisone and have been able to raise my hands above my shoulders for the first time without extreme pain for the first time in a year. I have so much renewed hope.

Hi again, been gone for awhile! All of your stories are familiar to mine! I've had a lot of pain in my hips, back and knees.....Rheumatologist said 3 years ago it was probably fibromyalgia, because of my blood test didn't show high level of sed rate and C-RP
was normal....but since Oct 2024 and now ......they have not been . I'm 78 this year. I'm on prednisone 10mg. Interesting fact about covid vaccine and covid. I had one bout of covid. I feel my system has been more reactive since covid started.
Appreciate all of the input here.! Helps to start learning how to live with this!

I'm curious what the MRI showed to indicate PMR? I was diagnosed without an MRI, but have always wondered how my rheumatologist truly knew that's what it was.