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.

redboat | @redboat | Apr 11, 2023
In reply to @michwest "Thanks for your response. You’ve been through a lot!! My levels were never as high as..." + (show)
@michwest

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.

Jump to this post

Pain is not the same as the inflammation blood markers. Inflammation blood markers reflect biological processes that your immune system is taking to deal with what it sees as an enemy.

Pain is your nervous system's response to the effects of that enemy and your immune systems attack on your body.

They are related, but really two different things.

REPLY
redboat | @redboat | Apr 11, 2023
In reply to @everettcatlin "I Am newly diagnosed with PMR but for years have been hurting. I have had pain..." + (show)
@everettcatlin

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.

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Have you looked into treatment with Actemra (Tocilizumab)?

It has been shown to be pretty effective in helping people get off Prednisone and go into remission. There are side effects, but overall the adverse events when it is used to taper with Prednisone are less than with Prednisone alone.

There was a good trial of it against Giant Cell Arteritis, which is a closely related disease, published in New England J Medicine.

https://www.nejm.org/doi/full/10.1056/nejmoa1613849
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Mentor
John, Volunteer Mentor | @johnbishop | Apr 11, 2023
In reply to @everettcatlin "Hi John thanks for responding. 1. I should have mentioned That I had Blood Work on..." + (show)
@everettcatlin

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.

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Hi @everettcatlin, There are a couple of other discussions you might find helpful for tapering off of prednisone and managing symptoms:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
--- Prednisone tapering is challenging. What does remission feel like?: https://connect.mayoclinic.org/discussion/prednisone-tapering-and-remission/.

You might want to talk to your rheumatologist or doctor about adding prescriptions for smaller amounts of prednisone since you can get 5, 2.5 and 1 mg tablets. You can also buy an inexpensive pill splitter. This will help when you the pain comes back after tapering and you don't want to go to the previous dosage if possible.

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1 reply
mimig1234 | @mimig1234 | Apr 11, 2023

I have had normal blood markers since my diagnosis a year and a half ago. Thank goodness I have a wonderful rheumatologist who listens. I originally started on 15 mg of prednisone but had to quickly decrease to 5 mg after only 4 months because I needed emergency surgery. I have stayed at 5 mg and managed to push through the aches and pains with Advil.

But for the past 3 weeks I had the worst relapse, again without any markers. It is so frustrating but my physician assured me this is not uncommon. When I questioned him if there could be a different diagnosis we missed he reassured me I had all the symptoms of PMR and it was more important to treat the pain than prove I have PMR. I started back on 15 mg yesterday and already have a decrease in pain. I hope this time I can complete the entire cycle of slowly reducing the
prednisone and find some pain free relief.

He did mention there is a newly FDA approved drug Kevzara which is showing promise.

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1 reply
Linda Moross | @lmoross | Apr 11, 2023
In reply to @everettcatlin "I Am newly diagnosed with PMR but for years have been hurting. I have had pain..." + (show)
@everettcatlin

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.

Jump to this post

It sounds to me like your taper was too fast. It took me more than a year to totally taper off prednisone. Perhaps try to seek a referral to a rheumatologist. I believe they know more about PMR than regular doctors do.
Best wishes for relief.

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1 reply
everettcatlin | @everettcatlin | Apr 11, 2023
In reply to @lmoross "It sounds to me like your taper was too fast. It took me more than a..." + (show)
@lmoross

It sounds to me like your taper was too fast. It took me more than a year to totally taper off prednisone. Perhaps try to seek a referral to a rheumatologist. I believe they know more about PMR than regular doctors do.
Best wishes for relief.

Jump to this post

Thank you I will seek a referral.

REPLY
connelly | @connelly | Apr 11, 2023
In reply to @michwest "My rheumatologist is a bit puzzled as to why I still have pmr pain but have..." + (show)
@michwest

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.

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I have had PMR now for 16 months. Healthy, highly active 83YO with no other illnesses or disabilities. Classic bilateral pain symptoms with elevated inflammation markers that quickly declined after starting 15mg Prednisolone and have remained normal ever since. Taper completed April 2023. However - over the entire period with Prednisolone and after ending my taper - bilateral pain (shoulders, arms, wrists, hands, hips) remained much the same. Worst in the early hours of morning. Alleviated by running and gym work. No signs of arthritis - my affliction seems to be entirely centred in the tendons with pain as the central manifestation. From my treating doctor’s point of view I am an atypical case for whom there is nothing much to be done. He has prescribed low dose Naltrexone (LDN) solely because I requested it as an experiment.

REPLY
1 reply
khmc | @khmc | Apr 12, 2023
In reply to @everettcatlin "I Am newly diagnosed with PMR but for years have been hurting. I have had pain..." + (show)
@everettcatlin

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.

Jump to this post

I think you are reducing too fast. Go from 20mg to 17.5 wait to see how you, feel then 15mg then 12.5 then 10 mg. It needs to be slow and steady, depending on how YOU feel after each change.

REPLY
robin1040 | @robin1040 | Apr 12, 2023
In reply to @michwest "My rheumatologist is a bit puzzled as to why I still have pmr pain but have..." + (show)
@michwest

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.

Jump to this post

Hi, I’m very active 56 yo diagnosed w PMR Nov 2022. My labs were always normal so it was a few months before I got a the diagnosis- & yes, suffering all the while. I’m currently on methotrexate (get some nausea & headache) & 5mg prednisone. I was hoping to get off the prednisone but am not able to yet. Nice to read about other people’s experiences on here.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Apr 12, 2023
In reply to @robin1040 "Hi, I’m very active 56 yo diagnosed w PMR Nov 2022. My labs were always normal..." + (show)
@robin1040

Hi, I’m very active 56 yo diagnosed w PMR Nov 2022. My labs were always normal so it was a few months before I got a the diagnosis- & yes, suffering all the while. I’m currently on methotrexate (get some nausea & headache) & 5mg prednisone. I was hoping to get off the prednisone but am not able to yet. Nice to read about other people’s experiences on here.

Jump to this post

Hello @robin1040, Welcome to Connect. I think we all wanted to be done with prednisone as soon as possible when we were first diagnosed with PMR but each of us are different and tapering slowly is the way to get off with a better chance of not having to go back on it. My first time with PMR took 3-1/2 years to taper off. Second time took 1-1/2 years or so. I made lifestyle changes the second time around and ate healthier which helped quite a bit for me. You might find the following discussion helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/.

One thing I found helpful was keeping a daily log. Do you keep a daily log with your pain level when you wake up and your dosage of prednisone for the day?

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