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PMR with normal blood markers
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...:(........
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HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
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So...before I wrote this on this forum, I made a phone appointment with the MC so I could speak to someone about this...Guess what?
They just called me a bit ago and informed ( as I understood it) me that due to the amount of patients they have, they will not be able to service me...ever....hmmm.
The female that I spoke to on this call sounded like she was a bill collector...you know the type. I'm a disabled Vet and on Medicare...so what I see is that Medicare won't cover the $146.000.00 they are going to charge them for them to say that they can't help a fellow human being that is having a bad medical problem...BY PHONE ! all I want is them to tell me where I should turn to next for my problem, not to give me a heart transplant. So...to say the least...I will never come back to this site orrr ever have any respect for the Mayo Clinic ever again. If they don't want any more patients over the phone...SHUT DOWN THE SYSTEM ONLIN ON THE WEBSITE !!
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4 Reactions@johnlo, I can understand your disappointment in not being able to get an appointment at Mayo Clinic. Unfortunately in some departments, the clinic gets more requests for appointments than there is availability. It sounds like this is the case for the department in which you were seeking care.
I've moved your question about PMR with normal blood markers to the Polymyalgia Rheumatica (PMR) Support Group here: https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/
You may be interested in this related discussion:
- Ongoing pain with normal CRP and ESR - PMR? https://connect.mayoclinic.org/discussion/ongoing-pain/
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1 Reaction@johnlo I am in the same boat. All my tests are negative and I feel like I’m sick…
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1 Reaction66...Exact same thing? PMR flare up with blood markers all in normal ranges? What docs aren't getting in their arrogant heads is that a lot of the times those blood markers only show positive at ONSET of PMR....flares do not necessarily have raised markers. Let me guess, Mayo hasn't helped you either...?
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3 Reactions@johnlo, I didn't have that issue with my Mayo rheumatologist. You can have PMR with normal CRP and ESR levels but a lot of doctors seem to be unaware of that fact which is why I would seek out a rheumatologist if it were me, or maybe have a chat with your doctor and bring along a reference for the discussion.
-- 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/
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1 Reaction@johnlo I have 2 forms of Vasculitis. One is Giant Cell Arteritis, the other one Polyarteritis Nodosa. Giant Cell Arteritis is a close “cousins of PMR.
My blood tests show almost nothing now, however I have symptoms.
I have seen a Rheumatologist at Mayo, and I have a Rheumatologist in my community. Both treat situations like this cautiously. Prednisone is a help, but it is evil on your body. I have been on and off it for the last 6 years. I would rather not take it if I can.
Right now I’m taking hydroxychloroquine. It’s not a two headed monster like prednisone.
I’m so sorry you are having so much pain and frustration. Sometimes it feels like you are the only one going through something like this, but you’re not!
S.
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2 ReactionsMy markers were normal as well. I was started out with 30 mg Prednisone a day and all my symptoms vanished ( stiffness, pain legs/hips , overwhelming fatigue) until I was gradually reduced to 20 mg per day. I am now set to see a rheumatologist in a few weeks as the prednisone dose alone is not keeping my symptoms away. I think for you, I would get a consult with a rheumatologist as well.
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2 ReactionsYou can still have PMR and have normal markers.
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2 ReactionsThere is absolutely no reason the doctors should be hesitant to Prescribe prednisone for PMR. It is a recommended treatment accepted in the United States and Europe.
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4 ReactionsI had a flare up of PMR in the fall and was prescribed prednisone. The symptoms disappeared but now I have severe finger stiffness in the morning and my C-reactive protein is higher. Anyone else experienced this?
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