What age were you diagnosed?

@maye33

Funny thing ... my doctor told me rigor mortis goes away quickly on its own but PMR doesn't. Since I was stiff and sore for weeks ... she didn't think I had rigor mortis. 🥳 party time!

At first --- I actually thought it was a blessing to be diagnosed with PMR. I was prescribed more prednisone than I needed. For many years before PMR - I hoarded leftover Prednisone that my ophthalmologist prescribed to me for flares of uveitis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
and
https://www.ncbi.nlm.nih.gov/books/NBK551523/
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I once messaged my PCP because I thought I would need 100 mg of prednisone for a few days. My PCP immediately called me back on the phone and asked me if I was sure 100 mg for a week would be enough!!!

Dadcue
Oh my goodness 100mg not enough!
Evidently you’ve come through a lot !

I just thank my luck stars I was diagnosed in the age of biologic treatments.

Your Dr is both humorous and correct about the very different prognostic outcomes between Rigor mortis and PMR !

@maye33

Prednisone was a friend of mine at a relatively young age before I ever heard of biologic treatments. PMR entered the scene almost 20 years ago when I was 52 but there weren't any biologics to treat PMR back then.

My rheumatologist received authorization to treat me with Actemra about 7 years ago. Now I thank my lucky stars that I' have been off Prednisone for 5 years and in the age of biologic treatments.

My rheumatologist also says that I have been though a lot including decades of Prednisone use. He says it would have been impossible to adequately treat everything when everything started so Prednisone was the best option at the time.

Some of my problems required surgical corrections. Prednisone deceived me and made me think those problems could be managed with Prednisone too.

I was 54 when I diagnosed myself with PMR. I say this because, when I first complained of my symptoms, my primary care physician and rheumatologist both disagreed with my own PMR assessment. In light of my normal inflammation results, they both believed that I was too young to have PMR and insisted instead that I had arthritis on my shoulders and hips. I had done a lot of research on my own and ruled out many other disorders with similar, but not identical bilateral pain. When the x-rays showed that I did not have arthritis, I insisted on getting on low-dose prednisone starting at 20 mg. Except for lingering mild bursitis on my right shoulder, my symptoms disappeared within 48 hours. My rheumatologist wanted me to taper off pred quickly, but I explained to her that a quick taper will result in relapses, according to published studies. I tapered down to 10 mg after one month then subsequently reduced the dosage by 1 mg every month. I am now down to 5 mg and doing well. One thing I have learned with taking prednisone is that any other pain not symptomatic of PMR (such as pre-existing pain from osteoarthritis on my lower back) will initially get better but will start coming back as you taper down. Therefore it is extremely important to distinguish whether your increasing pain is symptomatic of a PMR flare or a different condition. Finally, I believe that the cause of my PMR onset is accumulated stress and possibly perimenopausal factors as well. I am Southeast Asian with no familial history of PMR. Looking back, I think my PMR symptoms started in March when I first experienced pain on one shoulder which started spreading on both sides of my neck, shoulder, and hip girdle. Luckily, I diligently researched my symptoms and condition and was able to guide my doctors in treating me properly.

@e441300
I had exactly the same experience, doctor could not believe I had PMR 9 years ago because I was only 49, and CPR wasn’t sky high. I had a lot of stress and was also perimenopausal. Took 15mg of prednisone, symptoms gone.
Now after 10 years PMR hit me again and this time luckily it was diagnosed on a PET scan.
I experience like you that the severe back pain I had before PMR is now gone with the prednisone, unfortunately I realize it will come back when tapering down.
I think doctors should learn they have to listen more to their patients because we know best what is happening with our bodies. Not always follow what is written in the medical data.

57yo, diagnosed last spring. Miserable and on methylprednisolone, tried methotrexate could not tolerate, trying not to take a biologic

@ndep
I agree. We must be proactive with regards to our health. I have read about so many people in this forum who have either been misdiagnosed or undiagnosed and, consequently, have suffered for years with PMR because they rely on doctors who are not educated sufficiently about PMR. My rheumatologist now understands that we have to go by my symptoms rather than my lab results in treating my PMR. Btw, when you relapsed, how were your symptoms? Were they as painful/severe as the first time or not? And how long did it take you to taper off completely from prednisone the first time? Thank you so much for your input and I sincerely hope we all get better soon.

I was 62. Relapsed the following year. A flare 10 years later. Relapsed the following year. Prednisone gives immediate relief making physical functioning possible. BUT I don't want to be hooked on it and I don't want to spend another year getting off of it. It damages the body.

@leighton68 I iterated the methylprefnisone (in the initial steroid pack , they called it) much better than Prednisone. I was treated by my PCP. I told him I preferred the Methylprednisone and he said No because Prednisone is the “go to” medication that rheumatologists use.
Now , after a Prednisone induced blood clot and three days in the hospital, I’m in the care of a rheumatologist. I want the biologic to get of the Predsisone ASAP.
Good luck and I wish you the very best in what I hope is a brief chapter in a long healthy life.

@stonewheel oh no! Sending you healing energy! Methylprednisolone is terrible, my ears ring so loud, brain fog, messes with my digestion, mood swings and I've put on 15 pounds! I just started LD naltrexone, I'm crossing fingers, im not gonna do the biologic, I want to get to the root cause, seeing a functional doctor in a few weeks. Good luck, hope you are on the mend soon