1. < Polymyalgia Rheumatica (PMR)
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Is it really PMR if symptoms aren't upon awakening?

Posted by joyl263 @joyl263, May 1 8:43am

I have been following multiple groups including this one to see if anyone's experience is similar to mine. I have the classic PMR symptoms (hip, thigh, shoulder and upper back ache, fatigue and weakness)except that I wake up feeling fairly pain-free in the morning. Then as I go about my day and start to get active the pain comes on with the fatigue. Rest and over the counter pain meds seem to help. I do get the stiffness in those same places after brief rest and when I'm trying to get up. My lab work shows some inflammation. I have two other autoimmune diseases, Vitiligo and alopecia areata. It's so confusing to me that I don't have the worst of my symptoms when I wake up. I wonder if there's anyone else out there that has a similar experience or am I misdiagnosed? I do see a rheumatologist and I was diagnosed after finding relief with prednisone. I ended up being on it for 9 months and slow tapering off and within a week my symptoms came back. Now she wants to start me on kevzara.

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

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joyl263 | @joyl263 | May 6 8:57am
In reply to @janiceem "I had such a mild case that I only hurt while I was in bed. It..." + (show)
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I had such a mild case that I only hurt while I was in bed. It took 4 months to diagnose because my labs were normal. Predisone immediately took away my pain and I tapered off of it in about a year. I started with just 10 mg. Hope this helps.

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@janiceem did your symptoms return after the taper?

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janiceem | @janiceem | May 6 7:54pm
In reply to @csimmonds "@janiceem My experience is similar to yours. I started with higher dose of prednisone probably because..." + (show)
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@janiceem My experience is similar to yours. I started with higher dose of prednisone probably because inflammation marker was high at beginning. It has been a year and a month and I have tapered to 1 but have trouble going lower, even 1mg every other. I am at a point of deciding whether to go off prednisone and accept my pain in bed, which is getting worse.. Every morning I have to remind myself that it will get better when I get out of bed, start moving, and even do some stretching exercises. Such a strange disease.

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@csimmonds I empathize with you. FYI, I did continue my routine of exercise classes the whole time-- pilates, Zumba, aquatic fitness class, and yoga. But I did lower my light weights to 4# because 5# seemed to cause me lingering pain overnight. Not sure why.

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janiceem | @janiceem | May 6 7:55pm
In reply to @joyl263 "@janiceem did your symptoms return after the taper?" + (show)
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@janiceem did your symptoms return after the taper?

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@joyl263 Not really, but I did have to lighten my weights to 4# versus 5# to avoid some lingering pain overnight. Not sure why.

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suetex | @suetex | May 7 11:50am
In reply to @judy15 "@suetex What was the medicine in the Medicare?" + (show)
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@suetex
What was the medicine in the Medicare?

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@judy15 Yes, I bileave it was. But pred is pretty cheap.

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stonewheel | @stonewheel | May 8 5:07pm
In reply to @maye33 "My pmr pain was worst overnight disrupting sleep and relieved somewhat by getting up in the..." + (show)
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My pmr pain was worst overnight disrupting sleep and relieved somewhat by getting up in the morning.
An atypical pmr presentation, but positively confirmed by PET scan.

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@maye33 My PMR pain woke me up at night (pre-dawn hours) too, but struggling to get out of bed and then off of the toilet was nearly impossible and dreaded due to the pain.
Me, Kevzara 4 months, just tapered to 5mg Prednisone.

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maye33 | @maye33 | May 8 6:35pm
In reply to @stonewheel "@maye33 My PMR pain woke me up at night (pre-dawn hours) too, but struggling to get..." + (show)
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@maye33 My PMR pain woke me up at night (pre-dawn hours) too, but struggling to get out of bed and then off of the toilet was nearly impossible and dreaded due to the pain.
Me, Kevzara 4 months, just tapered to 5mg Prednisone.

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@stonewheel 5mg pred , that sounds like good progress, long may it continue.
All the best to you .

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jabrown0407 | @jabrown0407 | May 8 10:01pm

I asked my AI tool what, other than PMR, you might have - since AI does not Dx problems and it skirts being accountable for practicing medicine here is the list of tests it suggested might be checked -
ESR & CRP; Thyroid panel; CK (muscle enzyme); Vitamin D; CBC & metabolic panel; ANA, RF, CCP (if autoimmune suspicion is higher);
Medication review (especially statins);
X‑rays of hips/spine if mechanical disease suspected

Here is the list the problems it might be according to my AI Bestie -
Mechanical or degenerative spine/hip disease
Fibromyalgia
Hypothyroidism
Statin‑associated muscle symptoms
Inflammatory myopathy (mild forms) - this is uncommon
Early seronegative rheumatoid arthritis
Bursitis or tendon inflammation
Especially: Trochanteric bursitis; Subacromial bursitis; Gluteal tendinopathy (I had trochanter bursitis Dx when PMR came on - it is chronic now)
Viral or post‑viral inflammatory syndromes - These can mimic PMR for weeks to months

Personally, I would not want to start a biologic until most of the items above have been eliminated as causes. The issue I would have is that the pain not being there in the mornings until you get active is really outside of the PMR disease profile. I realize that PMR presents differently in everyone, so it could be PMR. I hope your journey is successful.

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joyl263 | @joyl263 | May 9 8:03am
In reply to @jabrown0407 "I asked my AI tool what, other than PMR, you might have - since AI does..." + (show)
Profile picture for jabrown0407 @jabrown0407

I asked my AI tool what, other than PMR, you might have - since AI does not Dx problems and it skirts being accountable for practicing medicine here is the list of tests it suggested might be checked -
ESR & CRP; Thyroid panel; CK (muscle enzyme); Vitamin D; CBC & metabolic panel; ANA, RF, CCP (if autoimmune suspicion is higher);
Medication review (especially statins);
X‑rays of hips/spine if mechanical disease suspected

Here is the list the problems it might be according to my AI Bestie -
Mechanical or degenerative spine/hip disease
Fibromyalgia
Hypothyroidism
Statin‑associated muscle symptoms
Inflammatory myopathy (mild forms) - this is uncommon
Early seronegative rheumatoid arthritis
Bursitis or tendon inflammation
Especially: Trochanteric bursitis; Subacromial bursitis; Gluteal tendinopathy (I had trochanter bursitis Dx when PMR came on - it is chronic now)
Viral or post‑viral inflammatory syndromes - These can mimic PMR for weeks to months

Personally, I would not want to start a biologic until most of the items above have been eliminated as causes. The issue I would have is that the pain not being there in the mornings until you get active is really outside of the PMR disease profile. I realize that PMR presents differently in everyone, so it could be PMR. I hope your journey is successful.

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@jabrown0407 I saw the best endocrinologist in our area and he did diagnose me with Hashimoto's but said there are no symptoms with it????? Feel like most doctors just don't have the time or the interest to get to the bottom of my symptoms.

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jabrown0407 | @jabrown0407 | May 9 10:09am
In reply to @joyl263 "@jabrown0407 I saw the best endocrinologist in our area and he did diagnose me with Hashimoto's..." + (show)
Profile picture for joyl263 @joyl263

@jabrown0407 I saw the best endocrinologist in our area and he did diagnose me with Hashimoto's but said there are no symptoms with it????? Feel like most doctors just don't have the time or the interest to get to the bottom of my symptoms.

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@joyl263 A quick google search of the internet will get you to creditable sources that will list the most common symptoms for hypothyroidism. Symptoms vary widely because it is a hormone problem and people react differently. There are some that are very common, some not so much. Spend some time checking it out. Not sure how low you were or how long it will take to get you regulated - mine took about a year and a half. They have to go very slowly because if the doctor Rx's too much it can kill you - not what either of you want. I tell my endo doc that watching her make changes is like watching frozen molasses drip. Very different than rheumatology.

You might keep looking at some of the other problems, because the symptoms you described certainly do not all fit thyroid deficiency. Hang in there.

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