1. < Polymyalgia Rheumatica (PMR)

PMR with normal blood markers

Posted by johnlo @johnlo, Jan 26, 2023

Hello peoples...
I have PMR and have been fine after getting off Pred until the Covid came on stage...then the flare up hit me, along with the stress of the country blowing up at the 2020 election, I just went to hell..:(. I didn't do anything for quite awhile 'cept bi### and moan/cry along with the stress and confusion about the vaccine, which I was against because of unknown and known meds and I don't get along and who knows what the long term effects are? I finally succumbed to the Moderna vaccine after research findings said that the PMR flare up CAN be caused by a virus being fought off by the PMR...Hmmm. So I got it, and guess what? My PMR symptoms were reduced very much ! More even after the second vaccine shot....then tapered off a little after the 3rd. Now, it's been a year since the 3rd and still have the PMR symptoms and they are gradually increasing in strength.
Now the kicker here......
All my blood markers showing PMR are /have been in the normal range and have seen A LOT of doctors ( VA included)but they are all scared to give me Prednisone...(License issue)...because the markers are normal.....:( Now what? I can't take any NSAIDS anymore because now I have sensitivties/side effects from them and my body doesn't like opiods either.....
I think I may be a good canidate for a PMR test subject...LOL.
Does ANYONE out there have any good suggestions what my next step should be? I'm getting close to the end of my rope here...and it's a solid hit when i let go...:(........

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

DadCue | @dadcue | May 23, 2023
In reply to @everettcatlin "1. I am confused by the results. 2This test shows no muscle disease present. 2.1 Question..." + (show)
@everettcatlin

1. I am confused by the results.
2This test shows no muscle disease present. 2.1 Question Do I have pmr and Dr. are you looking in other areas? 2.2 If so what are you looking for? 2.3 I am taking 20 mg of Prednisone a day, if Pmr is not indicated by the tests do I need to stop taking it and do I go cold turkey or taper off? 2.4 Doc when ever I take the Prednisone seems to be helping with the pain stay with it even though PMR has been eliminated as a diagnosis?
3. Now a Question to the group. This test indicated no muscle disease, PMR is a muscle disease, now what any suggestions from the group ? I am clueless at this point.
Thank you for reading my rant and hope I come across as stupid.

Jump to this post

I don't think anyone knows for sure what PMR is. It is "associated" with GCA which is a type of vasculitis. There is "large vessel vasculitis" or LVV. However, PMR might be something different ...possibly "small vessel vasculitis" which interrupts the blood supply to muscles and connective tissue.

The area of inflammation tends to be widespread and affects "many muscles" and that is how PMR gets its name. The area of inflammation isn't seen in the muscles though. The test you had (MyoMarker 3 Profile) I think tests for muscle inflammation which is called myositis.

PMR is not the same as myositis. The area that has inflammation as seen in PMR is in the synovium which is connective tissue that lines the inside of the joint capsule and is filled with fluid. That kind of inflammation is called synovitis. Maybe the following link explains it better than I can.
https://www.nature.com/articles/ncprheum0520#:~:text=Studies%20of%20patients%20with%20PMR,synovitis%20of%20the%20large%20joints.
The exact cause of PMR is unknown. The difficulty in making a diagnosis is that many types of inflammatory arthritis cause inflammation in the same area as PMR. The question most often is whether a patient has PMR or inflammatory arthritis. In my case ... my rheumatologist says I have both.

REPLY
1 reply
grammy82 | @grammy82 | May 23, 2023
In reply to @everettcatlin "1. I am confused by the results. 2This test shows no muscle disease present. 2.1 Question..." + (show)
@everettcatlin

1. I am confused by the results.
2This test shows no muscle disease present. 2.1 Question Do I have pmr and Dr. are you looking in other areas? 2.2 If so what are you looking for? 2.3 I am taking 20 mg of Prednisone a day, if Pmr is not indicated by the tests do I need to stop taking it and do I go cold turkey or taper off? 2.4 Doc when ever I take the Prednisone seems to be helping with the pain stay with it even though PMR has been eliminated as a diagnosis?
3. Now a Question to the group. This test indicated no muscle disease, PMR is a muscle disease, now what any suggestions from the group ? I am clueless at this point.
Thank you for reading my rant and hope I come across as stupid.

Jump to this post

Not a rant and NO to cold turkey.
PMR is an autoimmune disease. You need a diagnosis before you can have effective treatment. Have you been to a rheumatologist? My best...glad you are here.💞

REPLY
1 reply
everettcatlin | @everettcatlin | May 23, 2023
In reply to @grammy82 "Not a rant and NO to cold turkey. PMR is an autoimmune disease. You need a..." + (show)
@grammy82

Not a rant and NO to cold turkey.
PMR is an autoimmune disease. You need a diagnosis before you can have effective treatment. Have you been to a rheumatologist? My best...glad you are here.💞

Jump to this post

Thanks for the reply. The rheumatologist is the one who ordered the myomarker 3 plus profile tests. This test had to go to a California lab. The Dr's nurse called to say the test was negative for muscle disease. There was no further explanation. I guess I will have to wait until my follow up visit to get specifics.

REPLY
grammy82 | @grammy82 | May 23, 2023

You mentioned doctors, but have you seen a rheumatologist? Your CRP and ESR can be normal....and you can still have PMR. ( I hasten to add....I don't have it, I have GCA; autoimmune diseases don't discriminate.)

I've never heard 'licensing issue'... a new one for this old gal.💞

REPLY
freeme | @freeme | May 24, 2023

You could try Serrapeptase which I used just before dx with a little success. HBOT and daily use of a pemf mat are also part of my complementary treatment protocol.

REPLY
everettcatlin | @everettcatlin | May 26, 2023
In reply to @dadcue "I don't think anyone knows for sure what PMR is. It is "associated" with GCA which..." + (show)
@dadcue

I don't think anyone knows for sure what PMR is. It is "associated" with GCA which is a type of vasculitis. There is "large vessel vasculitis" or LVV. However, PMR might be something different ...possibly "small vessel vasculitis" which interrupts the blood supply to muscles and connective tissue.

The area of inflammation tends to be widespread and affects "many muscles" and that is how PMR gets its name. The area of inflammation isn't seen in the muscles though. The test you had (MyoMarker 3 Profile) I think tests for muscle inflammation which is called myositis.

PMR is not the same as myositis. The area that has inflammation as seen in PMR is in the synovium which is connective tissue that lines the inside of the joint capsule and is filled with fluid. That kind of inflammation is called synovitis. Maybe the following link explains it better than I can.
https://www.nature.com/articles/ncprheum0520#:~:text=Studies%20of%20patients%20with%20PMR,synovitis%20of%20the%20large%20joints.
The exact cause of PMR is unknown. The difficulty in making a diagnosis is that many types of inflammatory arthritis cause inflammation in the same area as PMR. The question most often is whether a patient has PMR or inflammatory arthritis. In my case ... my rheumatologist says I have both.

Jump to this post

Thank you for the great explanation and link. I have a follow up appoint on 15 June with my rheumatologist. Take care and your in my prayers.

REPLY
mrspunkin | @mrspunkin | Oct 9, 2023

Hi, I have not been diagnosed with polymyalgia rheumatica even tho I have all the symptoms. I just saw a rheumatologist today & he agrees that it sounds like it & is prescribing steroids since my pain has responded well in the past. I was told that my inflammation was up by my primary Dr but rheumatologist says it's normal. My question is has anyone ever been diagnosed with one with normal blood work?? Thank you!

REPLY
4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 10, 2023
In reply to @mrspunkin "Hi, I have not been diagnosed with polymyalgia rheumatica even tho I have all the symptoms...." + (show)
@mrspunkin

Hi, I have not been diagnosed with polymyalgia rheumatica even tho I have all the symptoms. I just saw a rheumatologist today & he agrees that it sounds like it & is prescribing steroids since my pain has responded well in the past. I was told that my inflammation was up by my primary Dr but rheumatologist says it's normal. My question is has anyone ever been diagnosed with one with normal blood work?? Thank you!

Jump to this post

Hello @mrspunkin, Welcome to Connect. You will notice that we moved your post into an existing discussion on the same topic so that you can connect with other members and learn what they have shared. If you click the link below it will take you to the beginning of the discussion.
--- PMR with normal blood markers: https://connect.mayoclinic.org/discussion/pmr-with-normal-blood-markers/.

Do you mind sharing what starting dose of prednisone was prescribed and if your rheumatologist has suggested a tapering plan?

REPLY
janiceem | @janiceem | Oct 11, 2023
In reply to @mrspunkin "Hi, I have not been diagnosed with polymyalgia rheumatica even tho I have all the symptoms...." + (show)
@mrspunkin

Hi, I have not been diagnosed with polymyalgia rheumatica even tho I have all the symptoms. I just saw a rheumatologist today & he agrees that it sounds like it & is prescribing steroids since my pain has responded well in the past. I was told that my inflammation was up by my primary Dr but rheumatologist says it's normal. My question is has anyone ever been diagnosed with one with normal blood work?? Thank you!

Jump to this post

Hi, I was diagnosed with a mild case of PMR (only hurt at night in bed) and had no inflammatory markers. I started with 10 mg. Prednisone and weaned off in about a year.

REPLY
barbsnow | @barbsnow | Oct 12, 2023

I was treated for (not diagnosed) with PMR despite having a SED count that was not high, was not even borderline. A prednisone dose pack that lasted a month (maybe 20 days) set everything right for 5 years. I'm now on a 2nd flareup and the SED number does show inflammation this time.

REPLY
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