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...:(........

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mrspunkin | @mrspunkin | Aug 3 9:27pm
In reply to @janiceem "I also had no blood markers for PMR--everything was normal, but then again, I had a..." + (show)
@janiceem

I also had no blood markers for PMR--everything was normal, but then again, I had a very mild case. (My symptons started soon after my second Pfyzer vaccination.) I only hurt when laying in bed! As soon as I got up, I was fine! It took 4 months to diagnose and was put on 10 mg. Prednisone. My pain stopped immediately and I tapered off of the Prednisone in about a year. I had one flare up when I contracted COVID in Dec. 2022, but it hasn't flared up since, even though I had COVID again last week for about 5 days. This time it was like having a head cold with no fever and I haven't had a booster since my 2nd vaccination in March of 2021! I do attribute my mild cases to my whole foods, primarily plant-based diet, high in anti-inflammatory foods. I highly recommend it (and I happen to be a registered dietitian.) I also do some sort of exercise class 6 days a week.

Jump to this post

I feel my PMR was brought on either by the vaccine for covid or I had gotten shingles & I wasn't the same for a long time after that. Either way I was in a bad place for a long time til I finally got treatment. I feel sometimes the pain is trying to come back but so far I'm good. I would not wish that pain on anyone. My brother sure doesn't understand. He tells me as you get older you have to get used to differences in your body. While that's true I was getting to where I was almost disabled with the pain. I'm glad I have somewhere I can talk to other people who've had it

REPLY
gailg | @gailg | Aug 7 11:30am

I have been on this blog for several years and it has preserved my sanity. I've seen multiple doctors, and they all say it can't be PMR because I have normal blood markers, but from symptoms I know it is. I can't find a Rheumatologist that will see me because the markers are normal. Long shot, are any of you that have normal markers but are seeing a Rheumatologist in Colorado??

REPLY
1 reply
Teri | @tsc | Aug 8 6:36pm
In reply to @gailg "I have been on this blog for several years and it has preserved my sanity. I've..." + (show)
@gailg

I have been on this blog for several years and it has preserved my sanity. I've seen multiple doctors, and they all say it can't be PMR because I have normal blood markers, but from symptoms I know it is. I can't find a Rheumatologist that will see me because the markers are normal. Long shot, are any of you that have normal markers but are seeing a Rheumatologist in Colorado??

Jump to this post

Hi @gailg, I can't answer your question about doctors in Colorado,but I had full onset PMR for about seven months and my inflammation markers were only slightly elevated - such that my PCP took no notice. Eight months later, I had a host of strange symptoms, and my inflammation markers were highly elevated. I had GCA.
Absent the inflammation markers, and with symptoms of PMR, one medical textbook's chapter on PMR suggests a diagnostic trial dose of prednisone, 15 - 20 mg. If there is a dramatic clinical response, it says treat as PMR. If there isn't a response, other disorders to consider - connective tissue disorder, hypothyroidism, infection, malignancy. (Goldman and Sach's Textbook of Medicine)
I also found an article which addresses this isswue.

Table I
A four-point guidance on how to investigate PMR when normal ESR and CRP coexist

1.
In an older person complaining of chronic bilateral shoulder and hip girdle pain associated with inflammatory morning stiffness, a possible PMR can be considered (even if ESR and CRP are both normal) if the proposed therapies do not improve pain and self care
2.
An ultrasound examination of shoulder and hip girdle as well as the measurement of other biomarkers in adjunct to ESR and CRP can give additional information
3.
A fast and significant improvement after a few days (seven days, on average) of low-dosed prednisone can confirm the first diagnostic suspicion, but it should be kept in mind that a watchful follow-up is mandatory
4.
Several diseases can mimic PMR in some clinical features and in positive response to low-dose prednisone. They must be carefully excluded (not only at the beginning but also after follow-ups). The possibility of occult GCA should be investigated.

Here's the link to the article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/
I wish you the best, and an answer!

REPLY
1 reply
gailg | @gailg | Aug 9 9:31am
In reply to @tsc "Hi @gailg, I can't answer your question about doctors in Colorado,but I had full onset PMR..." + (show)
@tsc

Hi @gailg, I can't answer your question about doctors in Colorado,but I had full onset PMR for about seven months and my inflammation markers were only slightly elevated - such that my PCP took no notice. Eight months later, I had a host of strange symptoms, and my inflammation markers were highly elevated. I had GCA.
Absent the inflammation markers, and with symptoms of PMR, one medical textbook's chapter on PMR suggests a diagnostic trial dose of prednisone, 15 - 20 mg. If there is a dramatic clinical response, it says treat as PMR. If there isn't a response, other disorders to consider - connective tissue disorder, hypothyroidism, infection, malignancy. (Goldman and Sach's Textbook of Medicine)
I also found an article which addresses this isswue.

Table I
A four-point guidance on how to investigate PMR when normal ESR and CRP coexist

1.
In an older person complaining of chronic bilateral shoulder and hip girdle pain associated with inflammatory morning stiffness, a possible PMR can be considered (even if ESR and CRP are both normal) if the proposed therapies do not improve pain and self care
2.
An ultrasound examination of shoulder and hip girdle as well as the measurement of other biomarkers in adjunct to ESR and CRP can give additional information
3.
A fast and significant improvement after a few days (seven days, on average) of low-dosed prednisone can confirm the first diagnostic suspicion, but it should be kept in mind that a watchful follow-up is mandatory
4.
Several diseases can mimic PMR in some clinical features and in positive response to low-dose prednisone. They must be carefully excluded (not only at the beginning but also after follow-ups). The possibility of occult GCA should be investigated.

Here's the link to the article:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/
I wish you the best, and an answer!

Jump to this post

Thanks so much for your response. A lot of it I knew but good to hear it again and of course the link to the article. I'm still trying to find a Rheumatologist that will see me with normal markers. Just had another blood test and hoping at this point that they are not normal.

REPLY
2 replies
janiceem | @janiceem | Aug 9 11:11am
In reply to @gailg "Thanks so much for your response. A lot of it I knew but good to hear..." + (show)
@gailg

Thanks so much for your response. A lot of it I knew but good to hear it again and of course the link to the article. I'm still trying to find a Rheumatologist that will see me with normal markers. Just had another blood test and hoping at this point that they are not normal.

Jump to this post

Hi Gail, I had normal blood markers and my rheumatologist knew right away what I had. I think that you just need to seek out an experienced rheumatologist who has seen it all. BTW, I did go to a second rheumatologist who thought I had cervical issues that caused my pain, but that didn't make sense since I had leg pain as well as upper arm/shoulder pain.

REPLY
2 replies
Teri | @tsc | Aug 9 2:16pm
In reply to @gailg "Thanks so much for your response. A lot of it I knew but good to hear..." + (show)
@gailg

Thanks so much for your response. A lot of it I knew but good to hear it again and of course the link to the article. I'm still trying to find a Rheumatologist that will see me with normal markers. Just had another blood test and hoping at this point that they are not normal.

Jump to this post

Just wondering if fibromyalgia was ruled out for you.

I self diagnosed and thought I had that for the longest time.

REPLY
1 reply
gailg | @gailg | Aug 9 3:13pm
In reply to @janiceem "Hi Gail, I had normal blood markers and my rheumatologist knew right away what I had...." + (show)
@janiceem

Hi Gail, I had normal blood markers and my rheumatologist knew right away what I had. I think that you just need to seek out an experienced rheumatologist who has seen it all. BTW, I did go to a second rheumatologist who thought I had cervical issues that caused my pain, but that didn't make sense since I had leg pain as well as upper arm/shoulder pain.

Jump to this post

Glad to hear your experience. Right now I am doing my best to find someone who will see me. Even with abnormal blood markers, waits are 9-12 months here.

REPLY
1 reply
janiceem | @janiceem | Aug 9 4:41pm
In reply to @gailg "Glad to hear your experience. Right now I am doing my best to find someone who..." + (show)
@gailg

Glad to hear your experience. Right now I am doing my best to find someone who will see me. Even with abnormal blood markers, waits are 9-12 months here.

Jump to this post

Wow! That wait is awful! Is it an insurance issue or where you are located?

REPLY
1 reply
gailg | @gailg | Aug 10 12:56pm
In reply to @janiceem "Hi Gail, I had normal blood markers and my rheumatologist knew right away what I had...." + (show)
@janiceem

Hi Gail, I had normal blood markers and my rheumatologist knew right away what I had. I think that you just need to seek out an experienced rheumatologist who has seen it all. BTW, I did go to a second rheumatologist who thought I had cervical issues that caused my pain, but that didn't make sense since I had leg pain as well as upper arm/shoulder pain.

Jump to this post

Thanks, I'm trying. Neurologists thought I had back issues when I had the hip pain, and neck issues when I had the shoulder pain. What a roller coaster.

REPLY
gailg | @gailg | Aug 10 12:57pm
In reply to @tsc "Just wondering if fibromyalgia was ruled out for you. I self diagnosed and thought I had..." + (show)
@tsc

Just wondering if fibromyalgia was ruled out for you.

I self diagnosed and thought I had that for the longest time.

Jump to this post

Nobody has ever mentioned that. But my symptoms are always bilateral as they move around.

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