1. < Polymyalgia Rheumatica (PMR)

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.

vellen | @vellen | Jul 1, 2023
In reply to @southtexas "That’s terrible, I’m sorry, my understanding is if you go too long with PMR untreated it..." + (show)
@southtexas

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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This is exactly why we take the prednisone. Well, and to lower the pain of course.

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cpd54 | @cpd54 | Jul 2, 2023
In reply to @becky72 "Thanks for all the good information. You nailed it about the rural areas…..i am in an..." + (show)
@becky72

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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I feel you about no prednisone because of existing eye conditions. I haven’t been officially diagnosed with PMR because like you my rheumatologist isnt playing along. And going to another is not an Option because he is the only one in my area. So, what I’ve done successfully to help my symptoms, is eat a AIP diet. Very restrictive but really simple to follow. Meat, vegetables (except nightshade) and fruit. I also take supplements for osteoporosis that maybe helping PMR…good luck to you on your journey.

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seniormed | @seniormed | Jul 2, 2023

If you have difficulty accessing an experienced rheumatologist don’t give up.
A good general internist or your primary could fill the gap. The inflammatory
lab markers can vary and don’t always make the diagnosis. It may help to revisit your primary and ask if they might consider testing you with an HS-CRP,a bit more sensitive. A therapeutic trial of 15 mg prednisone for 14 days
could present some evidence of your pathology if there are no contraindications.
I have seen improvement in my symptoms with the Mediterranean low gluten
dietary routine which is less restricted if you can be consistent. Doctors can
gaslight us unintentionally if they are “too busy” or mindset bound. If all else
fails travel to a medical center.In our seventies we deserve the best health span and ability to enjoy retirement.

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lizward46 | @lizward46 | Jul 2, 2023
In reply to @emo "Echoing the other great advice you’re receiving here(!): -I would get a second opinion. I have..." + (show)
@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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I would like to weigh in about PMR coming on gradually. My symptoms began in Jan. 2023 with sore hip flexors. I thought it was too much exercising and figured it would go away. It didn’t, but stayed the same for another couple of months. I was able to pretty much do my normal activities. We took a long trip out of the country in April and then I noticed great difficulty getting on and off the tour bus. By the time we returned home my hip pain had increased. I went to two orthopedic dr. who said it was osteoarthritis and they sent me to PT. Pain was getting worse, PT didn’t help and then my PT referred me to a rheumatologist. At that point I couldn’t get out of bed by myself, walking was a shuffle and getting up from a sitting position was very painful. Pain was bilateral in hips, lower back, across shoulder blades and in my neck. PMR was diagnosed and I am now on prednisone and tapering. So yes, PMR can be a gradual decline. The prednisone seemed like a miracle drug even though I know that it is not always a long term solution because of side effects. How to mitigate side effects: diet(anti inflammatory), exercise (not too strenuous), supplements (calcium, vit D, vit K, Pepcid). I have blood work every month and see my rheumatologist once a month. I too had trouble getting that first appointment. I asked to be put on a cancellation list and miraculously was able to see the dr. very quickly. I wish you well on this journey. PMR has takes up way too much space in my brain but if I can be of help to anyone who is suffering with this condition I feel better. Carpe Diem

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1 reply
drsterny | @drsterny | Jul 2, 2023

I'm a 70 y/o Psychologist who because of a lifetime of OA, learned to live with chronic pain. I thought I had it all settled. 8 months ago I start non productive sneezing, serial, every morning. I winter in FL and thought when I got there the sneezing would stop. I progressed to a viral outbreak that went through my system. It ended with PMR like pain and inability to move. I had the same experience you described with a lack of Markers. I've been on steroids 15 down to 1. I have increased pain (terrible) and still don't have a DX. Going to new Docs NOW---again,

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emo | @emo | Jul 2, 2023
In reply to @becky72 "Thanks for all the good information. You nailed it about the rural areas…..i am in an..." + (show)
@becky72

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.

Jump to this post

We’re all rooting for you. I know what you mean about turning to the forums… It’s funny because some doctor folks get annoyed with internet research >_< I’d disagree, as long as we research and share information wisely.

My father’s PCP’s team also didn’t believe us when we brought our concerns to them—it took multiple phone calls, and their MD on call in immediate care refused to see us even after we had lab results strongly suspicious of PMR.

I have a theory that PMR gets missed because it often affects older people with other pre-existing conditions and either we can try to explain it away, or the healthcare providers can. It’s frustrating to me.

We’ll never know if not treating the PMR quickly enough was the reason, but within 2 weeks of getting diagnosed (but weeks after having symptoms), he had a stroke. He was never screened for GCA (which can cause a stroke). His PCP prescribed a lower dose of prednisone after my mom left 3 phone messages and the aforementioned visit to their urgent care. They didn’t even give us a referral to a rheumatologist and presumably didn’t attempt to consult with one at least for short term feedback.

Glad you’re finding help here and wishing you all the best.

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Teri | @tsc | Jul 2, 2023
In reply to @becky72 "Thank you for replying. I went back to my results. My CRP was 19.6 . He..." + (show)
@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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Hi @becky72, I had severe fatigue after the onset of symptoms. I could manage a walk, but after that just sat around for the rest of the day, doing only what was necessary. Bloodwork showed I had anemia related to the PMR and GCA I was later diagnosed with. It is called anemia of chronic inflammation. Do you know if you're anemic?

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paulagcl | @paulagcl | Jul 3, 2023

I had the same experience of it coming on gradually until a more severe attack. Now looking back the pain pattern was classic. Three doctors missed this. Finally a new primary care dr (because I had moved to a new city) caught it.

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sandmason | @sandmason | Jul 3, 2023
In reply to @lizward46 "I would like to weigh in about PMR coming on gradually. My symptoms began in Jan...." + (show)
@lizward46

I would like to weigh in about PMR coming on gradually. My symptoms began in Jan. 2023 with sore hip flexors. I thought it was too much exercising and figured it would go away. It didn’t, but stayed the same for another couple of months. I was able to pretty much do my normal activities. We took a long trip out of the country in April and then I noticed great difficulty getting on and off the tour bus. By the time we returned home my hip pain had increased. I went to two orthopedic dr. who said it was osteoarthritis and they sent me to PT. Pain was getting worse, PT didn’t help and then my PT referred me to a rheumatologist. At that point I couldn’t get out of bed by myself, walking was a shuffle and getting up from a sitting position was very painful. Pain was bilateral in hips, lower back, across shoulder blades and in my neck. PMR was diagnosed and I am now on prednisone and tapering. So yes, PMR can be a gradual decline. The prednisone seemed like a miracle drug even though I know that it is not always a long term solution because of side effects. How to mitigate side effects: diet(anti inflammatory), exercise (not too strenuous), supplements (calcium, vit D, vit K, Pepcid). I have blood work every month and see my rheumatologist once a month. I too had trouble getting that first appointment. I asked to be put on a cancellation list and miraculously was able to see the dr. very quickly. I wish you well on this journey. PMR has takes up way too much space in my brain but if I can be of help to anyone who is suffering with this condition I feel better. Carpe Diem

Jump to this post

Me too, one shoulder started feeling inflammatory months before, then I tore a hamstring which took a month to get better, then suddenly the inner hips had me crouching to even walk. I was playing an excessive amount of pickleball and blamed it on that, I truly thought I needed an orthopedist and was thinking I suddenly had severe osteoarthritis and needed a double hip replacement. Never a twinge from either hip in my life, age 71.
It dawned on me that this was PMR when BOTH shoulders and hips suddenly hurt equally. I couldn't get out of bed. I started 20mg myself, no doctor, tho my husband is an internist and we always have lots of steroids on hand at home.
Meanwhile no rheum in our area will take PMR patients, they expect primary care docs to deal with it. Medicare pays nothing and there are a lot of us with PMR. Patients end up managing their own tapers anyway and it can go on for years.

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1 reply
emo | @emo | Jul 3, 2023
In reply to @sandmason "Me too, one shoulder started feeling inflammatory months before, then I tore a hamstring which took..." + (show)
@sandmason

Me too, one shoulder started feeling inflammatory months before, then I tore a hamstring which took a month to get better, then suddenly the inner hips had me crouching to even walk. I was playing an excessive amount of pickleball and blamed it on that, I truly thought I needed an orthopedist and was thinking I suddenly had severe osteoarthritis and needed a double hip replacement. Never a twinge from either hip in my life, age 71.
It dawned on me that this was PMR when BOTH shoulders and hips suddenly hurt equally. I couldn't get out of bed. I started 20mg myself, no doctor, tho my husband is an internist and we always have lots of steroids on hand at home.
Meanwhile no rheum in our area will take PMR patients, they expect primary care docs to deal with it. Medicare pays nothing and there are a lot of us with PMR. Patients end up managing their own tapers anyway and it can go on for years.

Jump to this post

I completely agree about patients needing to manage on their own… I just end up feeling like a football being tossed between a rheumatologist, PCP and other specialists. Everyone shrugs and says, “Not it.”

I have fibromyalgia, and it’s like that—my rheumatologist (who treats me for a different condition) told me she’s able to be “selective” and doesn’t treat fibromyalgia, which is typically treated by a PCP (???) My dad is the one with PMR.

Thankfully, we did find a rheumatologist who treats PMR and she’s very nice. But most of the decisions and interpretation fall on us.

After seeing him go through all his health conditions (he had a stroke last year 2 weeks after diagnosis of PMR), I’m convinced he would have died if not for my mom’s and my experience knowing we’d have to advocate for him in the medical system. She’s a retired RN and I’m used to being dismissed from having chronic pain conditions. Still, I didn’t realize it would he so hard to get help, get coverage, and get providers to listen. I wished I would have been able to prescribe what he needs!

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