Any others besides me 55 and younger?

[Kberly]

I was “finally” diagnosed with PMR (2 yr journey) at 54 yrs old. I just turned 55 and know this is unusual to contract at younger age. I’m wondering how many out there are also facing this at a younger than avg age? I want so badly for this to not be the prospect for the next 40-50 years of my life (all my grandmothers have lived to late 90’s and 100’s). I’m otherwise heathy, fit, travel, hike, and active. I keep trying to slooowwly taper unsuccessfully, but 4-5mg seems to be the amt that keeps me moving. Interestingly, I just discovered I have Lyme’s disease (Borrelia & also Bavarensis) and Mold mycotoxins so thinking that plus COVID triggered PMR. Anyone else dealing with this in their 50’s and would like to connect for support?

[PMRpro Ambassador]

I was still 51 when my first symptoms of PMR appeared but wasn't diagnosed for another 5 years. There have been a lot on the forum diagnosed in their 50s, several of us in our early 50s, Prof Sarah Mackie in Leeds says she has several patients in their 40s. But most are no longer here because they got off pred after 4 or 5 years and sailed off into the sunset. It is very unusual for PMR to last as long as you fear although there is a growing band of "10 years and counting" on here. Probably 90%+ get off pred - just not that many are off in the 2 to 3 years so many doctors think is normal. Why we have no idea - although I found an early paper recently which says

"The median duration of therapy was 37.3 months. It was estimated that 40 percent of patients will require therapy longer than four years. Corticosteroids were permanently discontinued in 31 patients after a mean of 23.7 months of therapy."

pubmed.ncbi.nlm.nih.gov/403...

What seems to have stuck is that "23.7 months of therapy" - and NOT the "40% require therapy for more than 4 years" which is far more in line with our experiences.

[Kberly in reply to PMRpro]

VERY interesting data/study information. Thanks for sharing. And that's encouraging that I might just beat this thing and live a normal life beyond PMR.

[sidra1968]

Yes, I got it at 53.. diagnosed a few months before turning 55 last May. Opposite of you though, not many family members makes it past 60 here (cancer, always..sister already with bad one at 51), so I guess I have that going or me. NOT, lol. I have lived accordingly at least, traveling when young and healthy, never taking anything for granted, etc.

My doc did do the whole "you're young". and I said that is relative, I'm not "that" young, really...and am NOT young to a 30 year old and told him of others on this site younger than me. He acquiesced after he ruled all else out (he was thorough, I will give him that), and after my ESR went UP after a month on 30 mg..he's been good ever since.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

You are not that unusual .. and please don't get fixated by the 2 year scenario - PMR is a self limiting disease, so that means it goes when its ready, not when doctor says it should.

A series of links to look at -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Kberly in reply to DorsetLady]

Great campaigns to help the uninformed! My Rheumy didn't say 2 years, he said 3-5, and that the younger you contract it you tend to go longer with it. Here's to the waiting (raises glass of wine).

[PMRpro Ambassador in reply to Kberly]

He sounds sensible - that is what we'd say was about right though some of us go a LOT longer than 5 years ...

[LucilleG]

I was 56 years old when I first noticed the symptoms just over 3 years ago. I started out at 40 mg and am now down to 4.25 mg. I also have longevity in my family (grandparents living into their late 90s and early 100s, along with their Ancestors also living into their 100s...my mom is 90 and in good health - still independent and living on her own).

Just in case you haven't read this article by Dr. Sarah Mackie...

rheumnow.com/blog/when-pmr-...

[Mamamia21]

I was 48 when I was diagnosed and am now 56. I am feeling really good at the moment and have been reducing steadily now for over 18 months. Started on 25mg in 2016 but am now on 4mg, heading to 3.5mg 😊. Its a journey that takes time and patience but you will find your path...

[Bramble2000]

Hi, mine started at age 48. Was diagnosed with a frozen shoulder. My Rheumatologist told me I categorically didn’t have PMR as I was too young. My symptoms were typical and inflammatory markers in the blood with high. I had a trial of Pred via my GP which worked within hours but still the Rheumy said I didn’t have it. I spent about 18 months basically bed ridden. Eventually he ordered a PET/CT scan which lit up like a Christmas Tree. No apology of course. I’ve really struggled with the Pred due to side effects. I really wouldn’t wish this on anyone!

[krillemy]

Hi

Welcome. I got sick at 51, and due to no raised CRP and especially age, doctors dismissed PMR even though prednisolone 15 mg did the trick. It has been a journey and still is after 5 years. But the past year, I have had a Rheumatologist that treats it as PMR. So, I am on 10 mg prednisolone after up and down and periods without any medication (not happening again). I have taken MTX for the past 6 months, not sure how much good it does, but I hope to be able to cope on 10 mg aided by the MTX... and we all wait for it to burn out

[cranberryt]

I was just shy of 49 when I was diagnosed in 2019. I am almost at 5 years and down to 1mg. I definitely have to live life slower and I still have good days and bad days (mostly fatigue). But the low dose still manages the pain and stiffness. I have had to adjust my lifestyle for sure but have no problem staying at 1mg forever if needed.

[OilyWiggles]

53 here. I diagnosed myself after developing symptoms late last year. It took over a month to get an official diagnosis and a prednisolone prescription (which seemed too long to me, but others seem to have worse experiences). I'm on 10 mg OD at the moment. I'm looking into TRT to counteract the muscle wasting effects of both the atrophy while unable to move and the prednisolone itself (my testosterone level was already low before PMR/pred).

I really dislike prednisolone - I feel like I'm rushing on adrenaline all the time and can't sleep more than five hours per night (which triggers my migraines).

[Avadip12]

yes I was 50 yrs . Had 2 years prior being treated as fibromyalgia. I am now 68 and still need low dose steroids , and suffer daily stiffness. But the overall problem if dreadful fatigue.

[cmToddy]

Hi there. Just letting you know I had most PMR symptoms in my early 30s and I remember it all so well. I was told at the time I had depression and I took a course of Propropanol for 9 months. It cleared after a difficult 2 years. I had still never heard the term PMR when it returned at the age of 66. This time at least I had the steroids. I am now 70 and am now at 1 mg daily. Good luck to you.