Can PMR come on more gradually?

Posted by becky72 @becky72, Jun 30, 2023

Three to four years ago I had a lot of stiffness on,ly when riding in a car even for short distances. No pain but just weakness in kegs and stiffness after sitting. I went from walking 4 miles a day to not being able to walk much at all. Attributed it to afib which was permanent, the. This past December I worked out in 35 degrees all day…..overly cold and tired. Them the symptoms came in like everyone talks about. I could barely move…..searing burning pain and stiffness everywhere. Doctor gave me two ten day bursts of prednisone which helped immediately. I still have stiffness and extreme fatigue on many days. I finally got into a rheumatologist who said he couldn’t help me because my blood work didn’t show but a tiny bit of inflammation.so I take Tylenol and sleep two hours nearly every day. My primary doctor said I was a classic example of PMR but she did not take blood work when I was having flare.rheumatologist said he could not diagnose PMR without inflammatory markers. I can put up with stiffness but fatigue is so hard to deal with. Any ideas on this mess?

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

My first time with PMR came on as what I would consider gradually. Started having soreness in my feet, legs and finally shoulders and arms over a period of 4 or 5 months before I finally went to the doctor and got a referral to a rheumatologist. As far as your rheumatologist not being able to diagnose PMR without inflammatory markers that's just not the case according to many well versed and trained rheumatologist. Here's a discussion on the topic:
--- PMR diagnosis without markers in blood work: https://connect.mayoclinic.org/discussion/pmr-diagnosis-without-markers-in-blood-work/

Here are a few references on the topic of PMR with no inflammatory markers:
— 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/
— Polymyalgia Rheumatica with Normal Inflammatory Markers: https://www.amjmed.com/article/S0002-9343(18)30112-8/fulltext

Have you thought about getting a second opinion or possible seeing a rheumatologist who might be more familiar with diagnosing PMR?

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Thank you for replying. I went back to my results. My CRP was 19.6 . He said he had no way of telling what caused this inflammation so could not go along with PMR diagnosis of primary doctor. He also said I would have to be in a flare for him to take proper blood work. I didn’t see a sed rate but he did a rheumatoid arthritis panel and they were all normal. My primary doctor had given me two short bursts of 20 prednisone which stopped it in its tracks almost immediately. I am using Tylenol now for stiffness and some pain. I can handle that but it is the fatigue which is overpowering. I waited 7 months for an appointment with him and he said there was nothing he could do.

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@becky72

Thank you for replying. I went back to my results. My CRP was 19.6 . He said he had no way of telling what caused this inflammation so could not go along with PMR diagnosis of primary doctor. He also said I would have to be in a flare for him to take proper blood work. I didn’t see a sed rate but he did a rheumatoid arthritis panel and they were all normal. My primary doctor had given me two short bursts of 20 prednisone which stopped it in its tracks almost immediately. I am using Tylenol now for stiffness and some pain. I can handle that but it is the fatigue which is overpowering. I waited 7 months for an appointment with him and he said there was nothing he could do.

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I think if it were me, I would ask for a second opinion from another rheumatologist. Especially given that you mentioned the prednisone helped immediately. Here's another reference on the topic.

"Normal ESR and CRP should not stop to include PMR in differential diagnosis."
--- Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: https://academic.oup.com/rheumatology/article/58/5/921/5285558

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That Rheumatologist is an idiot and apparently not versed on PMR at all, thank the Lord your regular doctor knew what was going on. Unbelievable that the first doctor still has his license.

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Absolutely get another opinion or better yet, another doctor. The fact that the prednisone worked so quickly is a good sign you have PMR. What you need to do is to get that inflammation under control as to avoid GCA. Giant Cell Arteritis. That's very serious and could cause blindness.
Further, as you have probably read, we are all on long term prednisone and tapering . Some have stalled at certain doses but to only get short bursts isn't helpful in the long run.
I suggest you call your primary and tell them you need a referral to a rheumatologist asap. Good luck and let us know how it goes.

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Echoing the other great advice you’re receiving here(!):

-I would get a second opinion. I have seronegative spondyloarthropathy (meaning no elevated inflammatory markers) and a Mayo Clinic rheumatologist missed it. I saw three other rheumatologists, who did narrow down to the correct diagnosis.

Also my pain was so bad that they proposed empiric treatment (meaning trial and error—try the treatment to prove the condition) because my quality of life and pain was so affected.

-I know the wait list might be insanely long, but maybe you could get lucky? When my dad got PMR, the clinic I looked up had online booking and I was able to check regularly and for him a sooner appointment.

Or with that clinic (which I know is not usual) the rheumatologist said if I or my dad’s doctor would have called and asked for an urgent appointment, they could have tried to find someone to help.

-If that isn’t an option, can you work with your PCP to treat/manage the suspected PMR since they believe it’s a PMR diagnosis? Some in the forum have shared that have excellent experiences working with their PCPs.

My aunt is an internist/PCP and she told me she’s treated many cases of PMR. She is in a rural area where rheumatologists are not so accessible.

-Others have said this, but long term prednisone with monitored tapering is the standard of care… Prednisone in short bursts will help almost anything, but with PMR, it’s going to come right back. It’s still possible it could be a different inflammatory condition but in theory if it was PMR on prednisone if your body can tolerate it would improve but other symptoms of the other condition(s) would manifest.

It is possible to have multiple autoimmune or other health conditions at the same time, unfortunately.

I’m wishing you all the best. I know a lot of this was said already, but sometimes also it helps to know we’re not alone.

Oh, I almost forgot. Your first question was about if PMR can come on gradually. I think so? My dad is the one with PMR, and it was like the short ramp up that you describe until suddenly he couldn’t get out of bed.

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@emo

Echoing the other great advice you’re receiving here(!):

-I would get a second opinion. I have seronegative spondyloarthropathy (meaning no elevated inflammatory markers) and a Mayo Clinic rheumatologist missed it. I saw three other rheumatologists, who did narrow down to the correct diagnosis.

Also my pain was so bad that they proposed empiric treatment (meaning trial and error—try the treatment to prove the condition) because my quality of life and pain was so affected.

-I know the wait list might be insanely long, but maybe you could get lucky? When my dad got PMR, the clinic I looked up had online booking and I was able to check regularly and for him a sooner appointment.

Or with that clinic (which I know is not usual) the rheumatologist said if I or my dad’s doctor would have called and asked for an urgent appointment, they could have tried to find someone to help.

-If that isn’t an option, can you work with your PCP to treat/manage the suspected PMR since they believe it’s a PMR diagnosis? Some in the forum have shared that have excellent experiences working with their PCPs.

My aunt is an internist/PCP and she told me she’s treated many cases of PMR. She is in a rural area where rheumatologists are not so accessible.

-Others have said this, but long term prednisone with monitored tapering is the standard of care… Prednisone in short bursts will help almost anything, but with PMR, it’s going to come right back. It’s still possible it could be a different inflammatory condition but in theory if it was PMR on prednisone if your body can tolerate it would improve but other symptoms of the other condition(s) would manifest.

It is possible to have multiple autoimmune or other health conditions at the same time, unfortunately.

I’m wishing you all the best. I know a lot of this was said already, but sometimes also it helps to know we’re not alone.

Oh, I almost forgot. Your first question was about if PMR can come on gradually. I think so? My dad is the one with PMR, and it was like the short ramp up that you describe until suddenly he couldn’t get out of bed.

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Good point about finding an appointment sooner. Sometimes you need to exaggerate though PMR shouldn't require that. Make sure the receptionist alerts the doctor as to your complaint, they just schedule people in. Some places will put you on a waiting list if you ask and can go in at a moments notice.

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@southtexas

That Rheumatologist is an idiot and apparently not versed on PMR at all, thank the Lord your regular doctor knew what was going on. Unbelievable that the first doctor still has his license.

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I agree and to think I waited 7 months to see him

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@emo

Echoing the other great advice you’re receiving here(!):

-I would get a second opinion. I have seronegative spondyloarthropathy (meaning no elevated inflammatory markers) and a Mayo Clinic rheumatologist missed it. I saw three other rheumatologists, who did narrow down to the correct diagnosis.

Also my pain was so bad that they proposed empiric treatment (meaning trial and error—try the treatment to prove the condition) because my quality of life and pain was so affected.

-I know the wait list might be insanely long, but maybe you could get lucky? When my dad got PMR, the clinic I looked up had online booking and I was able to check regularly and for him a sooner appointment.

Or with that clinic (which I know is not usual) the rheumatologist said if I or my dad’s doctor would have called and asked for an urgent appointment, they could have tried to find someone to help.

-If that isn’t an option, can you work with your PCP to treat/manage the suspected PMR since they believe it’s a PMR diagnosis? Some in the forum have shared that have excellent experiences working with their PCPs.

My aunt is an internist/PCP and she told me she’s treated many cases of PMR. She is in a rural area where rheumatologists are not so accessible.

-Others have said this, but long term prednisone with monitored tapering is the standard of care… Prednisone in short bursts will help almost anything, but with PMR, it’s going to come right back. It’s still possible it could be a different inflammatory condition but in theory if it was PMR on prednisone if your body can tolerate it would improve but other symptoms of the other condition(s) would manifest.

It is possible to have multiple autoimmune or other health conditions at the same time, unfortunately.

I’m wishing you all the best. I know a lot of this was said already, but sometimes also it helps to know we’re not alone.

Oh, I almost forgot. Your first question was about if PMR can come on gradually. I think so? My dad is the one with PMR, and it was like the short ramp up that you describe until suddenly he couldn’t get out of bed.

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Thanks for all the good information. You nailed it about the rural areas…..i am in an area where Kentucky, southern illinois, and southern indiana pretty much share the specialist pool so waiting lists are long. I am terrified of losing sight in my other eye and my eye surgeon has put his thoughts into this ………no prednisone. I know without a doubt if I reach the point I did when it came on, i have to take it. The forums are the only place that understand the kind of pain you go through. Because I have permanent afib I figured and so did my doctor that the stiffness and weak legs was from that .anyway, the information on this site is so helpful and I appreciate it so much.

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@becky72

I agree and to think I waited 7 months to see him

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That’s terrible, I’m sorry, my understanding is if you go too long with PMR untreated it could turn into GCA in some cases. Prednisone is a miracle drug in my opinion.

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