PMR with normal blood markers

A teaching medical university usually has a clinic attached. They usually have more doc's availlable to help and get you to the right kind of doc and some times specialist.

You could maybe go to the Mayo clinic in Arizona.

I myself have PMR and am looking to do as I suggested for you. Montana has a lack of specialist.

Hi @quilterdar, Are you close to the Billings Clinic? - https://www.billingsclinic.com/.

The Billings Clinic is part of the Mayo Clinic Care Network - https://www.mayoclinic.org/about-mayo-clinic/care-network

I am sorry you are going through this. I was diagnosed with PMR about eight months ago and was put on 30 mg of prednisone with the plan to taper the dose over one year. Initially I was relieved to have a diagnosis. For two months I was ( within 24 hours ) out of pain. My energy was like that of a 20 year old ( I am 72) and I no longer had any depression, fatigue. I was in heaven. Then hell came on me when the dose was reduced to. 20 mg. I asked my primary if he was going to initiate another medication like methotrexate ( which he had mentioned initially) and he said “no”. Then I was seen by a rheumatologist at the Mayo Clinic in Rochester last Friday who said he did not believe I had PMR based on the fact the 20 mg of Prednisone did not keep my pain away plus my inflammation markers “ were normal”. Now according to the website on PMR from the Mayo Clinic it states a person can have normal markers for inflammation ( C-reactive and Sed rate) and still “ have the disease. However, the likelihood would be small. Now, the rheumatologist does not know what is wrong with me, He believes the pain could be coming from osteoarthritis in my hips ( scheduled for a cortisone injection in the hip joint), or fibromyalgia ( which I highly doubt as I have no tender spots above the waist or any pain plus I do not have generalized pain) just in my hips and legs. He also ordered a nerve conduction study to also be done at Rochester. I went back on my past MRI’s trying to see if I or my doctors missed so something and sure enough I saw on a MRI a year ago where the radiologist had said my paraspinal muscles were atrophied. Now I guess more will come out after the nerve conduction study. I am also getting physical therapy twice a week plus in late March acupuncture with electricity ( I guess this is new). I am back to square one. Still in pain, leg stiffness and can barely walk. Will give you an update. I would appreciate any feedback you have for me as, like you I feel at the end of my rope.

My rheumatologist is a bit puzzled as to why I still have pmr pain but have normal inflammation markers after 6 months of prednisone. Both ESR and CRP were elevated on diagnosis (pmr confirmed by PET scan) but since starting prednisone they have been normal. I have gone from 20mg down to 8 now. Have tried methotrexate but did not tolerate it well. Specialist is now as
sending me for a second opinion on treatment. I also have been diagnosed with osteoporosis. I am 55 very active and healthy otherwise - pmr came out of the blue after the loss of 3 of my family members. So I have put it down to stress as being a trigger.

Have any other pmr sufferers had normal markers but still have pmr pain? I don’t want to go on a higher dose of prednisone as I also had side effects on the higher doses. Thanks.

My inflammation markers (ESD and CRP) are both low normal (EDD = 4 mm/hr and CRP < 4 mg/L) but I still feel pain around my shoulders and arms. It is far, far less than before treatment, and now typically 1-2/10, but is still can be as high as 4/40.

I was diagnosed with PMR and possible GCA on Feb 2, 2023, and am currently on 50 mg/day of prednisone and weekly injections of Actemra. I was on 60 mg/day of Prednisone until a few days ago, but with weekly Actemra injections, I am now quickly tapering off Prednisone, following a schedule similar to the Actemra trials for treating GCA published in the New England J of Medicine.
https://www.nejm.org/doi/full/10.1056/nejmoa1613849
I am 64 and was in excellent shape if a little thin - 12% body fat, BMI= 19.7, 50 bpm resting heart rate with regular aerobic work, 3x/week kettlebell weight sessions, including Russian get-ups with 35 lb bell - before the sudden appearance of this disease.

The initial pain was suicidally overwhelming; it felt like I had multiple broken bones 24/7 for the 3 weeks until I was diagnosed and treated. In addition to the pain before treatment, I had severe nausea and lost 8 lbs, fever, heavy night sweats, a general feeling of acute illness and infection similar to a severe flu, a feeling of headache and pressure behind my eyes in my forehead, and experienced double vision necessitating an ER visit to confirm I did not have a stroke (this happened after treatment with 20 mg/day of Prednisone, which turned out not to be enough). But overall, my response to Prednisone was very quick, and it was literally a life-saver.

My initial inflammation markers before treatment were extraordinarily high: CRP= 347 mg/L and ESD just under 100. I have read that younger, healthier victims sometimes have more severe attacks. Perhaps it is due to the relative strength of our immune systems, which finds it has more resources than older victims to attack the body.

I Am newly diagnosed with PMR but for years have been hurting. I have had pain in my shoulders, upper arm mussels, and hips. It was to the point that people grabbing my arms would hurt me.
1. Dr diagnosed PMR 27 Oct. 2023 and put me on 40 mg of Prednisone. and this gave me great relief.
2 On 9 Nov. 2022 the Dr dropped prednisone to to 20 mg but pain increased but was tolerable
3. later he reduced it back to 10 mg and the pain became bad again..
4 Went back to the Dr. 6 Apr. and he increased it back to 20 mg. and called in the new prescription, I thought. They issued a prescription for 10 mg again. I am hurting now.
5 i will visit the Dr. office today and try to get this corrected and a copy of my blood test results. there Is a lot I don't understand about PMR.
5 I will be 74 this year and PMR is making my life miserable. ANY SUGGESTIONS PLEASE would help.

Welcome @everettcatlin, From what I've read there are some people who have PMR with normal blood markers for inflammation. You will notice that we moved your post to an existing discussion on the same topic here:
--- PMR with normal blood markers: https://connect.mayoclinic.org/discussion/pmr-with-normal-blood-markers/.

@johnlo, @redboat, @cookiegirl1944 and others may have experiences to share with normal blood inflammation tests and PMR. Here is some information on the topic that may offer a better explanation:
— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/.
One of the things that helped me after my first occurrence of PMR was making some lifestyle changes - a little more exercise and eating healthier. Have you made any lifestyle changes or considered things that might help?

Thanks for your response. You’ve been through a lot!!

My levels were never as high as yours - And yes the pain is not what it was initially but there is still pain which I know is pmr related. I just don’t understand why that isn’t reflected in the blood inflammation markers.

Hi John thanks for responding.
1. I should have mentioned That I had Blood Work on 31 nov 2022.
2. My C-Reactive Protein, Quant was 0.6 (H)
3. My Sedimentation Rate-Westergren was 43
Now on 6 Apr 2023
4. My C-Reactive Protein, Quant 1.0 (H)
5. My Sedimentation Rate-Westergren 48 (H)
6. Just started back on 20 mg per day after running out of 10 mg/ day for last 4 days.