1. < Polymyalgia Rheumatica (PMR)

PMR and Inflammation Markers

Posted by lisa7707 @lisa7707, May 2, 2023

I was diagnosed with PMR in December and placed on prednisone which took most of my pain away. Saw rheum for first time in early March and she had me split dose the pred and my residual morning stiffness disappeared but my CRP is still climbing. When will this stop? Rheum added methotrexate which I don’t have many issues with other than fatigue and headache for a day or so. Don’t have labs for another week. BTW rheum said it was RA likely more than PMR because I had hand symptoms- all of my RA tests are negative so she has diagnosed me with inflammatory arthritis. Sorry for long post

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

DadCue | @dadcue | May 3, 2023

PMR was diagnosed 15 years ago ... long before Covid was a thing. I can't remember a single time that my inflammation markers were within the normal range after PMR was diagnosed. That might be an indicator that there is something more going on than PMR alone.

Your inflammatory markers may never decrease if you have both PMR and inflammatory arthritis. I was diagnosed with inflammatory arthritis about 15 years before PMR came along for the ride.

Before PMR was diagnosed, my flares of inflammatory arthritis were treated with a high dose of prednisone followed by a fast taper. After PMR was diagnosed, my rheumatologist wanted me to find a "stable dose" of prednisone that worked for all my symptoms. She let me decide what dose of prednisone I took. I started at 40 mg but was able to taper down to 30 mg. I thought my pain was reasonably well controlled on 30 mg of prednisone.

My rheumatologist thought 30 mg was too much prednisone for PMR. My rheumatologist said I should increase to 35 mg when my inflammation markers were still high on 30 mg.

I have been off prednisone for 3 years in spite of taking prednisone for 12 years. An endocrinologist said I might need to take prednisone for the rest of my life because of adrenal insufficiency caused by long term prednisone use. When your cortisol level is low, your body loses the ability to "regulate" inflammation. Any type of infection or additional stress will cause your inflammation levels to increase. You either live with higher than normal inflammation levels or take more prednisone. Unfortunately, an increase in pain might make it difficult to hold the line and not to take more prednisone.

REPLY
1 reply
lisa7707 | @lisa7707 | May 3, 2023
In reply to @dadcue "PMR was diagnosed 15 years ago ... long before Covid was a thing. I can't remember..." + (show)
@dadcue

PMR was diagnosed 15 years ago ... long before Covid was a thing. I can't remember a single time that my inflammation markers were within the normal range after PMR was diagnosed. That might be an indicator that there is something more going on than PMR alone.

Your inflammatory markers may never decrease if you have both PMR and inflammatory arthritis. I was diagnosed with inflammatory arthritis about 15 years before PMR came along for the ride.

Before PMR was diagnosed, my flares of inflammatory arthritis were treated with a high dose of prednisone followed by a fast taper. After PMR was diagnosed, my rheumatologist wanted me to find a "stable dose" of prednisone that worked for all my symptoms. She let me decide what dose of prednisone I took. I started at 40 mg but was able to taper down to 30 mg. I thought my pain was reasonably well controlled on 30 mg of prednisone.

My rheumatologist thought 30 mg was too much prednisone for PMR. My rheumatologist said I should increase to 35 mg when my inflammation markers were still high on 30 mg.

I have been off prednisone for 3 years in spite of taking prednisone for 12 years. An endocrinologist said I might need to take prednisone for the rest of my life because of adrenal insufficiency caused by long term prednisone use. When your cortisol level is low, your body loses the ability to "regulate" inflammation. Any type of infection or additional stress will cause your inflammation levels to increase. You either live with higher than normal inflammation levels or take more prednisone. Unfortunately, an increase in pain might make it difficult to hold the line and not to take more prednisone.

Jump to this post

I am only on 8 mg in morning and down to 4 in evening and have no symptoms at this dose but sounds like she wants my markers to decrease before she starts tapering more so that is why I am anxious for CRP to go down at least instead of up regardless of what I am taking.

REPLY
lizbethobrien | @lizbethobrien | May 4, 2023
In reply to @gailg "Doctors "think" I may have PMR, nearly 3 years into it still negative markers but all..." + (show)
@gailg

Doctors "think" I may have PMR, nearly 3 years into it still negative markers but all the other symptoms are spot on. Since negative markers they won't prescribe prednisone. Just want to say, the pain/weakness progressed from hips/thighs, to shoulders/arms, and onto hands. I lost strength in my hands and they were very painful. The doctors tried to tell me it was Carpal Tunnel but I knew it wasn't. My hands are now pretty much Ok but I've had a relapse in hips/thighs. I live on Ibuprofen and really question what the doctors really know about this.

Jump to this post

These are my thoughts based listening to doctors who have treated PMR. Markers are not always present, PMR is always treated with prednisone, and if you do have PMR which is being treated with prednisone your symptoms in most cases improve or go away almost within days of being on prednisone. This is one of the tale tale signs that it is PMR. Plus when they taper you off the prednisone and symptoms return, it is another strong indicator that you have PMR. I would seek a second and third opinion

REPLY
lizbethobrien | @lizbethobrien | May 4, 2023
In reply to @gailg "Doctors "think" I may have PMR, nearly 3 years into it still negative markers but all..." + (show)
@gailg

Doctors "think" I may have PMR, nearly 3 years into it still negative markers but all the other symptoms are spot on. Since negative markers they won't prescribe prednisone. Just want to say, the pain/weakness progressed from hips/thighs, to shoulders/arms, and onto hands. I lost strength in my hands and they were very painful. The doctors tried to tell me it was Carpal Tunnel but I knew it wasn't. My hands are now pretty much Ok but I've had a relapse in hips/thighs. I live on Ibuprofen and really question what the doctors really know about this.

Jump to this post

These are my thoughts based listening to doctors who have treated PMR. Markers are not always present, PMR is always treated with prednisone, and if you do have PMR which is being treated with prednisone your symptoms in most cases improve or go away almost within days of being on prednisone. This is one of the tale tale signs that it is PMR. Plus when they taper you off the prednisone and symptoms return, it is another strong indicator that you have PMR. I would seek a second and third opinion In addition, I had hand involvement too. At night it was at its worse I would have to soak them in hot water to make the pain subside. I to believe the onset of PMR could possibly be related to covid.

REPLY
gailg | @gailg | May 4, 2023

Thank you for your thoughts and insight. I am so glad I finally found this site. If I had seen it before, I would have done things differently. How long were you on Prednisone and have you had any side effects?

REPLY
1 reply
robin1040 | @robin1040 | May 4, 2023
In reply to @gailg "Doctors "think" I may have PMR, nearly 3 years into it still negative markers but all..." + (show)
@gailg

Doctors "think" I may have PMR, nearly 3 years into it still negative markers but all the other symptoms are spot on. Since negative markers they won't prescribe prednisone. Just want to say, the pain/weakness progressed from hips/thighs, to shoulders/arms, and onto hands. I lost strength in my hands and they were very painful. The doctors tried to tell me it was Carpal Tunnel but I knew it wasn't. My hands are now pretty much Ok but I've had a relapse in hips/thighs. I live on Ibuprofen and really question what the doctors really know about this.

Jump to this post

I have negative markers too and prednisone is the only thing that’s given me relief. They should at least let you try it.

REPLY
lisa7707 | @lisa7707 | May 4, 2023
In reply to @gailg "Thank you for your thoughts and insight. I am so glad I finally found this site...." + (show)
@gailg

Thank you for your thoughts and insight. I am so glad I finally found this site. If I had seen it before, I would have done things differently. How long were you on Prednisone and have you had any side effects?

Jump to this post

I have been on prednisone only since January and have horrible lower leg cramping and thinning skin. I haven’t gotten my Dexa scan results yet but I go to gym almost everyday and lift hard to prevent bone issues as much as I can.

REPLY
reets70 | @reets70 | May 6, 2023
In reply to @sharonanng "I have had a similar experience. My RA tests are also negative. My rheumatologist changed my..." + (show)
@sharonanng

I have had a similar experience. My RA tests are also negative. My rheumatologist changed my diagnosis from PMR to inflammatory polyarthritis and put me on hydroxychloroquine. I am down to 4 mg of prednisone, still have considerable hand issues and have seen a hand therapist which seems to have helped somewhat. My muscle aches and stiffness are minor and short-lived. An interesting journey.
A side note, I notice there are fewer PMR posts lately. I am interested to know if PMR activity on this site earlier was due to both the COVID vaccinations and COVID infections. Now that COVID is waning, are there fewer cases of PMR and other inflammatory conditions?

Jump to this post

I was just diagnosed two months ago and I haven’t been vaccinated since last September. I too have negative RA tests, but I have been suffering with arthritis issues for many years. I’m also on hydroxychloroquine for a lupus antibody for many years. Don’t know what that. One action is, if any.

REPLY
reets70 | @reets70 | May 6, 2023
In reply to @lisa7707 "When do inflammation markers go down though while on meds. Obviously my actual question got mixed..." + (show)
@lisa7707

When do inflammation markers go down though while on meds. Obviously my actual question got mixed in with all my history. Thanks

Jump to this post

My inflammation marker went down the first month on prednisolone.

REPLY
View MoreView Less
Please sign in or register to post a reply.