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.

everettcatlin | @everettcatlin | Apr 12, 2023
In reply to @johnbishop "Hi @everettcatlin, There are a couple of other discussions you might find helpful for tapering off..." + (show)
@johnbishop

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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John just wanted to let you and others that I asked my GP to set me up with a rheumatologist. I am now waiting for the referral. My last blood test on the 6Th. my numbers up. Question How do I find My thread and reply directly to it? I hate computers.

Thanks
Everett Catlin

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 12, 2023
In reply to @everettcatlin "John just wanted to let you and others that I asked my GP to set me..." + (show)
@everettcatlin

John just wanted to let you and others that I asked my GP to set me up with a rheumatologist. I am now waiting for the referral. My last blood test on the 6Th. my numbers up. Question How do I find My thread and reply directly to it? I hate computers.

Thanks
Everett Catlin

Jump to this post

To find all of your previous discussions and comments just click on your member name @everettcatlin or go to the top of any Connect page and click your profile icon and select Profile & Settings. You will see links at the left for Comments, Discussions and more.

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robin1040 | @robin1040 | Apr 12, 2023

Thanks for being a volunteer mentor! You’ve been dealing w this for quite a while. Thanks for the insights. I have a healthy diet/lifestyle already. I don’t keep a daily log. I really don’t have any pain or symptoms on my current regimen except a knee that gets more fluid in it if I do anything rigorous. It seems what ppl are doing for treatment is all over the map. At least I feel like I’m on the right path based on what I’ve read here. Thx

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michwest | @michwest | Apr 13, 2023
In reply to @mimig1234 "I have had normal blood markers since my diagnosis a year and a half ago. Thank..." + (show)
@mimig1234

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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Thank you for sharing this - very helpful to me.

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michwest | @michwest | Apr 13, 2023
In reply to @connelly "I have had PMR now for 16 months. Healthy, highly active 83YO with no other illnesses..." + (show)
@connelly

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.

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Thank you so much @connelly that is encouraging to hear - so similar to my pmr journey. Hope the LDN works!

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everettcatlin | @everettcatlin | Apr 13, 2023
In reply to @johnbishop "Welcome @everettcatlin, From what I've read there are some people who have PMR with normal blood..." + (show)
@johnbishop

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?

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I don't think I am quite getting it, My blood work is not normal.
1. On 24 Nov 2022 my C-Reactive Protein, Quant was 0.6 (H) (-

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 13, 2023
In reply to @everettcatlin "I don't think I am quite getting it, My blood work is not normal. 1. On..." + (show)
@everettcatlin

I don't think I am quite getting it, My blood work is not normal.
1. On 24 Nov 2022 my C-Reactive Protein, Quant was 0.6 (H) (-

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I'm just a patient like you with no medical training. Your doctor or rheumatologist can explain the test results better as relates to your specific condition. From what you mentioned, 0.6 is not high according to what I've read.

"Although “normal” CRP levels vary from lab to lab, it is generally accepted that a value of 0.8-1.0 mg/dL (or 8-10 mg/L) or lower is normal."
--- C Reactive Protein (CRP Blood Test): https://www.testing.com/tests/c-reactive-protein-crp/

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michwest | @michwest | Apr 13, 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.

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That is interesting and thanks for sharing your journey @robin1040. I couldn’t tolerate the methotrexate so trying to taper prednisone without it. I hope it works for you.

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janiceem | @janiceem | Apr 14, 2023

I'm a little confused by @johnlo's post. It sounds like his symptoms got better with each vaccination, which I am surprised to hear. My symptoms appeared soon after my second Pfyzer vaccination--my upper arms and thighs hurt like h*ll, but only when lying down in bed. My inflammatory blood markers have always been normal, but I happen to eat a whole food diet very high in anti-inflammatory foods, which may be helping me. I managed to taper off my low dose of prednisone within a year, but it flared up after I contracted COVID. I am once again tapering off a very low dose of prednisone.

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dstedman62 | @dstedman62 | Apr 17, 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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Yes, mine have been normal for two weeks after starting prednisone. I can feel the information coursing through my body. I started tapering in March. I got from 20mg to 12.5mg when my pain increased to 15! I’m back on 20 mg. I feel like crap! I was at 15 mg for a month and felt better than I do on 20mg so I’m tapering back to 15 starting today. 💕

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