PMR onset under 55?

I was 52 when diagnosed with PMR. I didn't get off prednisone completely until I was 66. I will be 70 this year.

Technically, I still have PMR. I'm still being treated except not with prednisone. My rheumatologist just thinks I might be in remission.

I wonder if the younger a person is--- do they have PMR longer? Nobody seems to want to answer this question.

I began having symptoms at 54. Of course I didn't know it at the time but it was PMR. Weeks went by numerous doctors couldn't pinpoint it. Then symptoms of GCA started. Still no diagnosis. I was sent to Infectious diseases. He gave me a physical and took more blood. It was at this point I decided to start my own investigation. I found a 50 something year old in the UK who had a blog. Everything he said pointed to my symptoms. It was around this time I started seeing double and had black dots in my vision. I also had severe depression. The next day I called the doctor and asked him if he had ever heard of giant cell arteritis. He laughed a little and said that was the first thing he thought of when he saw me, but you're way too young to have it. I asked if I could be tested for it and he said he would call me right back. After speaking to a rheumatologist he sent me to the drugstore to get prednisone and told me to take it right away. The rheumatologist told him that she thought that I had giant cell arthritis and I was in jeopardy of losing my eyesight. The next day I was taken in for a biopsy which confirmed what I had suspected. My PMR went away almost immediately but I had GCA for 4 years, with a relapse. I took my last shot of Actemra Nov 14, 2021. Yes, a day I'll never forget.

There are very few people around 50yo diagnosed with PMR and practically none under 50. That's mostly because doctors are instructed not to diagnose PMR under 50 because people under 50 don't get it... So the records show nobody under 50 getting (or rather being diagnosed with) PMR, and the myth continues. What a Catch22 that is.

So when an "expert" tells us nobody under 50 gets PMR, we need to remember that under 50 something else must be diagnosed, even when the symptoms are the same as PMR. How they think the body knows we are 50, I have no idea.

Hi. I was 46 years old when diagnosed with PMR. I am now 53. I have been on prednisone for 7 years. I have recently had a bone density scan and have the bone density of an 85 year old. I have since decided to go off prednisone and I am now in pain again. I want to try and do everything I can do improve my bone density.
Everything I read says it only last for 2 years! But maybe if you get it young it lasts for longer. My doctor doesn’t seem to care (or have time to care I suppose).
Does anyone have any natural treatment that has helped? Either with reducing pain or improving bone density?

If you can afford it, pemf and hbot. Also need to purchase equipment or be in a location where you can but treatments. So not cheap.

Hi @tarshamaree, I would like to add my welcome to Connect along with @freeme and others. Sorry to hear you got PMR at the young age of 46. Seven years is a long time to deal with it. I'm not sure I would cold turkey stop taking prednisone without discussing a plan with your doctor or rheumatologist. That likely is contributing to more pain. It can be difficult to taper off. Took me 3 and half years the first time and six years later it came back again and I was able to taper off in 1 and half years. Mostly due to lifestyle changes with eating healthier and more exercise. You might find this information helpful:
--- Polymyalgia Rheumatica Diet: Do's and Don'ts: https://www.healthline.com/health/polymyalgia-rheumatica-diet

Hello. I am 54 and was diagnosed about 3 years ago. I have added flax seed oil, a gluten free diet, green tea, and a liquid calcium supplement to my prednisone regimen. But as I’m tapering (down to 3 mg and only reducing by a 1/2 mg monthly) I am still in pain. We’re looking at very low dose naltrexone as a possibility (another thread here talks about those currently using it).
Hang in there♥️

my doctor put me on a weekly dose of 70mg. alendronate (Fosamax) to mitigate the side effect of prednisone on bone density.

Calcium supplements along with Vit K and Vit D should be added to a calcium rich diet. Leafy greens, sardines, tofu, seeds, beans, and dairy products are a few great sources of calcium.

My doctor also has prescribed a Fosamax type drug weekly as I have osteoporosis.

Weight bearing exercises are also important to maintain bone health.

I was diagnosed with PMR and GCA at the same time when I was 54. PMR went away almost immediately after starting Pred but the GCA lingered. I was on 80mg a day for 8 months and then switched to Actemra. Took that until Nov 2021 when I was declared in remission and have been ever since.