Precursor symptoms to PMR?

Welcome @sticksandbugs, My first time around with PMR started with gout in my right foot that got progressively worse which I let go until I finally had pain that felt like it was everywhere and I couldn't walk. Had a referral from my primary care to a rheumatologist who diagnosed my with PMR. The gout turned out to be a different issue and treated with colchicine. The gout went away but the PMR stayed for 3 and 1/2 years. I also started at 20 mg prednisone.

You have plenty of company here on Connect with us PMR folks. You might want to scan through the other PMR discussions to learn what others have shared. Here's a link that lists the other discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=PMR. You can also change the search phrases for specific topics.

Do you keep a daily log of your level of pain in the morning and the dose of prednisone for the day?

Thank you @johnbishop for the kind welcome. Yes, I have been keeping a daily log, to bring to my first visit with the rheumatologist next week. My family doctor *thought* it might be PMR when I saw her mid-October 2024 (symptoms and blood test results), but I wasn't given much information or what to expect. Just prescribed prednisone and when 15 mg was ineffective she increased to 20 mg and then referred me to a rheumatologist. Kind of at sea here, so very pleased to find this group.

"Has anybody else noticed 'warning signs' of an impending flare of PMR?"
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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/
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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.

@dadcue that is awful, both to have TN and to also have the crazy push back from neuro. You would think they would have more issue with requests for pain meds! Glad the surgery helped. I wonder if you will develop any other warning signs now that you no longer have bouts of TN. Another of my 'warning signs' that I completely disregarded was fatigue/depression/insomnia. I put that down to my personal life circumstances, but now that I've been on prednisone for a month I have more energy and motivation and interest in things, and sleep for consecutive hours at night. Interesting how inflammation manifests.

"Now that I've been on prednisone for a month I have more energy and motivation and interest in things, and sleep for consecutive hours at night."
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This feeling is only temporary. Over time the opposite happens. Don't be deceived by the initial effects of prednisone. Euphoria is one of the common early side effects of prednisone but it typically doesn't last more than a few months at the initial dose. After that, people tend to need more prednisone for the same effect.
https://www.mayoclinicproceedings.org/article/S0025-6196(11)61160-9/fulltext
The medical meaning of euphoria is a "false sense of well being." I don't think people who are doing well need to take Prednisone. However, Prednisone works well for PMR. I just wish people didn't have to take prednisone for years after PMR is diagnosed.

Most medical professionals will "encourage" you to get off Prednisone as soon as possible.

@dadcue good to know! Not sure if I would call it 'euphoria' but definitely feel less depressed. I'll take it though, it's much better than before.

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.

@dadcue 😳 My face when I read this "I told my ophthalmologist that I "didn't care" if I lost my vision because I felt great."

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.

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?