Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Hi there- So sorry to hear about your pain, and the hair loss. I'm not a doctor of course, but could you talk to your rheumatologist again about your symptoms and if they feel certain it's PMR?

It sounds like you all may be considering other diagnoses now. As @johnbishop mentioned, there are several other conditions that can mimic PMR. And just to make things more confusing, you could of course have PMR and also have other conditions, such as a rotator cuff issue, etc.

If it is PMR, it's possible you may not have been on either a high enough dose of prednisone to start, or perhaps you weren't on it long enough? My father is the one with PMR (I am his caregiver, along with my mom), and he started with 20 mg and had significant (though not complete) relief. He ultimately had to go up to 30 mg for some time until his symptoms were nearly completely resolved, and only then did he start tapering very slowly. If he had a flare, then he had to slightly increase his dose until things were stable again, before continuing the taper.

I have not yet been diagnosed with pmr. I have rheumatologist appt in 2 weeks. I do have all the symptoms and more symptoms that may be something else also. My pain level goes up and down, I may be at a 4 out of 10 for a few days and go to a 7 for a few days.
I am very much afraid of prednisone and wonder if anyone has managed to deal with this with just diet and supplements.

@bren2023, Diet and lifestyle changes certainly helped with my second time around with PMR and made it easier to taper off of prednisone in a shorter period of time (1 and half years vs 3 and half years the first time around with PMR).

--- Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet

There are a lot of different conditions that mimic PMR that your rheumatologist may take into consideration -- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica.

None of us like taking prednisone but it may be the best alternative to control the PMR and hopefully get it back into remission. There is another discussion on the topic that you might find helpful:
--- PMR: Are there treatment alternatives to Prednisone?: https://connect.mayoclinic.org/discussion/alternatives-to-prednisone/.

Can you let us know what you find out at your upcoming appointment with the rheumatologist?

I was diagnosed with PMR in 2015. I too was/am apprehensive about Prednisone having known too many people that struggled to get off of it. I discussed this at length with my rheumatologist and decided to forego Prednisone.

My primary care physician recommended two Aleve twice a day for inflammation. It worked really well . . . however, I am concerned about taking medications for extended periods of time because of the possible long-term impact.

After chatting with an acquaintance of mine who has rheumatic arthritis, she told me she uses an herbal anti-inflammatory, Zyflamend. It's turmeric-based and I don't have the concerns about ingesting it that I do with prescription medications. I ordered it via Amazon and have been taking two capsules every day for several years. It works well about 95% of the time. If I have more pain than usual (usually less than once a month), I will take two Aleve.

Good luck!

Thanks, I will look for it on amazon. I am only taking ibuprofen right now and using voltaren gel externally, which helps some. I don't know what to do for the extreme exhaustion.
I follow a very strict anti inflammatory diet and take many supplements.

My father (I am his caregiver; he has PMR) takes low dose naltrexone (LDN) for fatigue. It's also thought to have an anti-inflammatory effect. It's believed to increase endorphins in the body and modulate glial cells, which when overactive contribute to chronic pain.

It's by prescription from a compounding pharmacy because it's a tiny fraction of the regular dose of naltrexone. At such small doses, it's used off label for chronic pain and chronic fatigue conditions, and some autoimmune conditions. While it's not a supplement as you're considering, my dad and I are both very sensitive to medications and have not experienced side effects. It's very low risk. It used to fly much more under the radar, but now it seems more people are looking into it because of it's potential utility with long covid.

He does take predisone. His PMR was severe and the risk of GCA very high; despite the risks of prednisone I don't believe an anti-inflammatory diet, supplements or NSAIDs (which are contraindicated for him) would have been effective enough. But of course each situation is different and it comes down to personal preference and health needs.

Though not an immunologist, my biggest surprise was how totally debilitating it was. At one point my arms were so painful, I told my husband if someone asked me if I wanted to cut them off, I’d have to consider it. Another time I thought “Oh my lord, just shoot me.” Was dx’d in April and doing quite well now. Happy to have my arms!!

I agree - arms are very handy.

When PMR first hit, I couldn't use my arms to get out of bed. Had to wiggle until I could hook a leg over the side, then slide to a standing position while clutching a flat pillow to my side. Fortunately, "only" my upper arms and shoulders have been affected.

Some updates. Latest blood tests showed big spike in sed rate, an increase in C Reactive Protein although still in acceptable range. Stopping Methotrexate, not having any effect and staying on 15 MG Prednisone for now. Rheumatologist still thinks Smoldering Myeloma is making PMR harder to treat. Seeing heme/onc next week and will have to see if ahe has an opinion on this.

I have many PMR symptoms but my bloodwork did not support this diagnosis. Therefore, I am stuck with pain and stiffness, fatigue, intermittent low-grade fevers, and muscle weakness with no treatment. It started in my shoulders, neck, and upper arms but now my hips and thighs feel the same. In January of this year, I was an active, energetic 69-year-old female with only moderate osteoarthritis. Now getting through each day can feel like a major challenge. I have to pace myself and also am my husband’s full-time caregiver. I’m worried that if my bloodwork doesn’t show any inflammation/autoimmune evidence, my doctor will never consider that this might be PMR and try steroid treatment. I know the risks of steroids, but how I feel matches many PMR testimonials, and I’m not doing well at all. My doctor referred me to a neurologist, but the appointment isn’t until March 5, 2024. I feel that a trial of steroid treatment might be warranted. Do doctors ever prescribe that without the corresponding bloodwork results (elevated sed rate and C-Reactive Protein)? I welcome any help and would like to know if others have experienced this situation.