1. < Polymyalgia Rheumatica (PMR)

Precursor symptoms to PMR?

Posted by sticksandbugs @sticksandbugs, Nov 27 9:28am

I was diagnosed with PMR a month ago, after a quick onset of classic symptoms. It hit fast and hard! But, before that, I had been struggling for almost a year with left leg pain (hamstring area) that referred to my knee, very painful, limping etc. I had been seeing an osteopath and massage therapist for treatment. I didn't recall any injury to the hamstring. Now that I've been on prednisone 20 mg/day for a month, my PMR symptoms are slowly resolving, but interestingly the hamstring issue is completely gone! I wonder if it could have been some kind of precursor, or very low level inflammatory issue? Has anybody else noticed 'warning signs' of an impending flare of PMR?

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sticksandbugs | @sticksandbugs | Nov 27 6:37pm
In reply to @ksquiltergirl "Hello Stick I had no idea the jaw pain and electrical taps to the face were..." + (show)
@ksquiltergirl

Hello Stick
I had no idea the jaw pain and electrical taps to the face were a precursor to a flare of PMR.
My PMR started 15 years ago with debilitating pain to my pelvic bones, shoulder and arms. I was prescribed 20 mg to start and told to start weaning down 1 mg. every month. It took about 5 years to get off the meds.
I have had at least 3 flare ups since then, and I am dealing with one now. I am on 8 mg. and the Dr. mentioned when I get down to 5mg., if I am still hurting he is going to try me on Kevzara. I have read the side effects and I am troubled by what they are.
Do you have any info on this med?

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So sorry you’re going through this ❤️ I don’t have any info about anything, unfortunately. Newbie. Also, in Canada, so likely treatment will differ. I see a rheumatologist first time next week so hoping for information. My family doc didn’t even examine me. She listened to me, did blood work that showed elevated CRP last month, repeat CRP this week was even higher (doubled). Have been on prednisone for just over a month. RBCs, hemoglobin, hematocrit low. Ferritin normal. 🤷‍♀️

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sticksandbugs | @sticksandbugs | Nov 27 7:08pm
In reply to @brian326 "Yes I noticed unusual muscle soreness for about 3 months before the full fledged PMR symptoms..." + (show)
@brian326

Yes I noticed unusual muscle soreness for about 3 months before the full fledged PMR symptoms showed up. I would do something like go running or ride a peloton (things I typically was doing weekly), and I might be sore for 5 days. I joked that age was just starting to catch me (56 y/o) but it wasn’t normal. Finally when I got the more classic symptoms I saw a dr and was diagnosed in 4 days.

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My diagnosis so far is family doctor basing it on my reported symptoms, and blood work. I haven’t been examined yet. See rheumatologist next week. I’m not saying family doctor is wrong but I’ve had limited response to prednisone (based on my own ready/research). Looking forward to knowledgeable input from specialist. I’m almost 60, and used to being extremely active. This diagnosis has been a challenge in more ways than just knowing what to call it

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1 reply
DadCue | @dadcue | Nov 27 7:32pm
In reply to @ksquiltergirl "Hello Stick I had no idea the jaw pain and electrical taps to the face were..." + (show)
@ksquiltergirl

Hello Stick
I had no idea the jaw pain and electrical taps to the face were a precursor to a flare of PMR.
My PMR started 15 years ago with debilitating pain to my pelvic bones, shoulder and arms. I was prescribed 20 mg to start and told to start weaning down 1 mg. every month. It took about 5 years to get off the meds.
I have had at least 3 flare ups since then, and I am dealing with one now. I am on 8 mg. and the Dr. mentioned when I get down to 5mg., if I am still hurting he is going to try me on Kevzara. I have read the side effects and I am troubled by what they are.
Do you have any info on this med?

Jump to this post

I will defer to people who have actually taken Kevzara.

I'm on a similar biologic called Actemra. It is similar in the sense that both Kevzara and Actemra block the effects of the Il-6 cytokine that is implicated in PMR and GCA.

There is a good video contained in the following link:
https://www.pmrandil6.com/il-6-and-pmr/
There are additional tabs about the current standards of care and general information about PMR and GCA.
-----------------------
An electrified face isn't a precursor to PMR flares in most people. It was another condition I had that got involved whenever my inflammation wasn't controlled.

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reets70 | @reets70 | Nov 28 6:13am
In reply to @dadcue ""Has anybody else noticed 'warning signs' of an impending flare of PMR?" -------------------------- YES! I had..." + (show)
@dadcue

"Has anybody else noticed 'warning signs' of an impending flare of PMR?"
--------------------------
YES! I had trigeminal neuralgia (TN) and that always got worse before a flare of PMR. I absolutely could not let TN get riled up. I could handle "random electrical zaps" to my face once in a while. When those electrical zaps would happen more often ... sheer panic would start to set in. The stress of TN is hard to describe. TN isn't called the "suicide disease" for no reason. I used to call TN my "inflammation alarm." There was no amount of prednisone that I wouldn't take in a sometimes futile attempt to get my inflammation levels back down.

"Trigeminal neuralgia (TN), also known as "suicide disease", is a chronic pain disorder that causes severe facial pain and can lead to mental anguish:"
https://arizonapain.com/trigeminal-neuralgia-suicide-disease/
--------------------
It was pathetic to have to anticipate impending doom that those electrical shocks would cause. There was no amount of Prednisone I would NOT take to make those electrical shocks stop. When they would happen in pairs and triplets, I knew it was just a matter of time until the full on electricity would start.

The sad thing was that I knew that prednisone helped but I got push-back from neurologists who said TN was NOT treated with Prednisone. I would counter and say the stuff they treated me with was making TN worse.

I the end ... there was some redeeming value when a neurosurgeon said that people with TN usually had a list of pain medications a mile long to treat TN. He was amazed that he didn't see any pain medications listed for me. I told him that I only took Prednisone because nothing else worked. I think I noticed one eyebrow go up on the face of the neurosurgeon when I said that.

After surgery for trigeminal neuralgia, the surgeon said prednisone was helping the inflammation and swelling in the area around my brain stem where the problem was. Fortunately surgery stopped TN from happening at all so Prednisone wasn't the best solution.

The problem was a vascular issue that was compressing my trigeminal nerve. Inflammation and swelling can cause a lot of pain depending on where it occurs.

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I can’t believe I actually have TN, but I’ve been suffering with those electrical ,shocks for years, interestingly, when I was diagnosed with PMR year and a half ago, I was prescribed methylprednisolone for six months, now prednisone, and I haven’t had one “shock” since then!
I can barely walk straight, but no shocks to the head!

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1 reply
DadCue | @dadcue | Nov 28 7:07am
In reply to @reets70 "I can’t believe I actually have TN, but I’ve been suffering with those electrical ,shocks for..." + (show)
@reets70

I can’t believe I actually have TN, but I’ve been suffering with those electrical ,shocks for years, interestingly, when I was diagnosed with PMR year and a half ago, I was prescribed methylprednisolone for six months, now prednisone, and I haven’t had one “shock” since then!
I can barely walk straight, but no shocks to the head!

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I'm sorry that you have experienced the electrical shocks to the face.

For me ... the fact that I took Prednisone instead of seeking surgical intervention for trigeminal neuralgia was part of the problem.
https://pubmed.ncbi.nlm.nih.gov/36113711/
However, it was also good that Prednisone helped temporarily at least. It was hard to gauge how much Prednisone to take for trigeminal neuralgia. The pain was so severe it forced me to take a lot of Prednisone.

How much and when to take prednisone for PMR was difficult too. It was all just a guess and doing the best you can.

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pdxmac | @pdxmac | Nov 28 11:55am

I limped along with fairly debilitating neck and shoulder pain for more than a year before it spread to my back and hips and my PCP finally said - "I think this might be PMR". Now I finally have a good rheumatologist and I've been on steroids for 15 months. I have only been able to taper down to 10 mg due to a rough start with my first rheumatologist. At least the trend line is good and I have this wonderful forum. I get so much more out of this than I do any other source.

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1 reply
sharon44r | @sharon44r | Nov 29 10:12am
In reply to @dadcue "I had more energy and motivation and interest in things too. I didn't have a care..." + (show)
@dadcue

I had more energy and motivation and interest in things too. I didn't have a care in the world. I didn't seem to have any need to sleep because I was feeling no pain and an abundance of energy.

Granted, I was on a rather high dose of prednisone. I was also on the verge of going blind in one eye. I told my ophthalmologist that I "didn't care if I lost my vision because I felt great." My ophthalmologist simply said he didn't want me to feel too good about the situation! He wanted me to reduce my prednisone dose rather quickly.

What prednisone dose people can tolerate is highly variable. My self imposed limit was 60 mg and up to 100 mg for a few days if that's what was needed. For some people their tolerance is much lower. For other people their tolerance level is higher. The problem is, people typically aren't aware what their tolerance is when they have just started taking prednisone.

Prednisone can also mask pain that has nothing to do with PMR. It is nice not to have any pain but not all pain is PMR pain. For most conditions there are better treatment options. There are other things besides prednisone that can be done.

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What helped you besides prednisone.. I tried methotrexate and it did nithing. I can’t get below 5 mg after 2 1/2 years

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2 replies
DadCue | @dadcue | Nov 29 10:51am
In reply to @sharon44r "What helped you besides prednisone.. I tried methotrexate and it did nithing. I can’t get below..." + (show)
@sharon44r

What helped you besides prednisone.. I tried methotrexate and it did nithing. I can’t get below 5 mg after 2 1/2 years

Jump to this post

A long list of medications were tried. I started with 40 mg of Prednisone and NSAIDS were used sparingly as needed. Celebrex was said to cause the least amount of GI problems but then they said that wasn't true and NSAIDS were completely stopped. Methotrexate was then used as my first DMARD followed by Leflunomide.

I was also being treated for trigeminal neuralgia and every neuropathic pain medication under the sun was used. I hated all of them and they just made things worse. Neuroleptics drugs included Lyrica , Dilantin, Tegretol and Neurontin.

When severe spinal stenosis was discovered, muscle relaxants were used and I found Cyclobenzaprine (Flexeril) to be helpful.

Ultimately, Actemra (IL-6 inhibitor) got me off Prednisone after more than 12 years. Humira (TNF-inhibitor) wasn't any help for PMR but might work for inflammatory arthritis.

I currently don't take Prednisone or anything else for pain. I just do a monthly infusion of Actemra (tocilizumab). My PCP recently asked me if I needed anything for pain. When I said nothing other than Actemra. she said Actemra was NOT a pain medication! She said Actemra treated "inflammation" and if I needed anything for "pain" to let her know.

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glinda47 | @glinda47 | Nov 29 11:10am

I am 100% pro science and believe in vaccines. Having said that, I did get my 3rd or 4th covid shot (booster) in Nov '23 and the PMR started in my thighs in Jan '24. I don't think they're related but who knows.
The other thing that occurred about 6 mos prior was that I stepped up my exercise program to include a lot more pressure on my thighs. When the PMR pain hit, I was completely sure that I had over-exercised. Which may have been the case. When it spread to my shoulders, I knew something more was going on.
I do think there are things that cause PMR but no $ to do the research.
I will say I'm iffy about getting the current covid booster. Haven't had any shots of any kind since pmr.
Best to you. Hope your recovery is swift.

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2 replies
laurapmr | @laurapmr | Nov 29 9:07pm
In reply to @glinda47 "I am 100% pro science and believe in vaccines. Having said that, I did get my..." + (show)
@glinda47

I am 100% pro science and believe in vaccines. Having said that, I did get my 3rd or 4th covid shot (booster) in Nov '23 and the PMR started in my thighs in Jan '24. I don't think they're related but who knows.
The other thing that occurred about 6 mos prior was that I stepped up my exercise program to include a lot more pressure on my thighs. When the PMR pain hit, I was completely sure that I had over-exercised. Which may have been the case. When it spread to my shoulders, I knew something more was going on.
I do think there are things that cause PMR but no $ to do the research.
I will say I'm iffy about getting the current covid booster. Haven't had any shots of any kind since pmr.
Best to you. Hope your recovery is swift.

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My symptoms started after a Covid vaccine. While I’m seeing a rheumatologist successfully now with prednisone treatment, my primary care, doc advised me, and I totally agree, not to get any more Covid vaccines.

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