How old are you ?

I was wondering how old other people with PMR are ?

I was 52 when I first had symptoms, both my GP and Consultant say I am too young to have it - seem to have proved them wrong 😰

It did take five months to finally see the consultant and he has sent me for MRI scans, chest X-ray, hand X-ray and abdominal ultrasound.

I was due to see him in 4 months but he called me to say he wasn't happy with results and have to see him in 2 months now - hoping his diagnosis doesn't change from PMR!

22 Replies

  • I got PMR at 52 as well but not properly diagnosed until I had a PET scan 2 years later, because I was also deemed too young. Now 56 and still have it!

  • I was diagnosed in June and am also 52. Rheumy thinks I may have PMR and fibromyalgia. Have not worked since June. Just have too much pain and fatigue. On 20 mg prednisone and tapering. The tapering process should be very telling (if I have relapses etc. we know it's the PMR).

    Because I'm an atypical patient, like you, seems they are still investigating all the alternative diagnoses. My GP, rheumy and physical therapist are working well together. Oncologist reviewed labs and took more blood tests to rule out cancer. Had X-rays and MRIs of the shoulders, hips and lower back. MRI of lower back revealed Degenerative Disk Disease (DDD) and two herniated disks. MRI of hips led to a pelvic ultrasound to view ovarian cysts. Waiting for results of that. One thing leads to another. Feel like we're still looking for some underlying cause of the illness-especially in light of my age!

  • I was diagnosed with PMR in august aged 51

  • HI

    I am 61 diagnosed in August thus year but feel I have had it for several years before

    I have a underactive thyroid and was always fobbed of by GP that I had a thyroid condition and CFS ? so what did I expect .

    But having a diagnosis helps.

    Best Wishes Rose

  • Diagnosed at 57 also have fibromyalgia and have had that for several years pre pmr

  • Hi, I was diagnosed aged 52. My GP had"no idea what could be wrong with you". 4 months after 1st symptoms saw rheumatologist who diagnosed pmr. That was all in 2013. Following 1 flare am currently on 7mgs. Regards, tinq

  • Age 53, diagnosed in late June. Still being tested for other possibilities but appears to be PMR/GCA due to my response to steroids (plus who knows what else). Have not been able to taper down much further than 45 from 60 without issues so now I'm on methotrexate. Tomorrow is my third dose of MTX and then hopefully we can get the steroids down.

    Good luck!!

  • I was diagnosed eventually at age 49 with pmr & gca. Previously diagnosed with Fibromyalgia. Now 50 and retired on ill health.

  • Hi Apaininthe

    I am 54 and have just had my first Rheumy consult, I was started on 30mg Pred for PMR 10 days ago and saw the Rheumy on Monday, He immediately sent me to Ophthalmologist and now i am booked for a Temporal Artery Biopsy on Monday, hopefully it will rule out GSA ! Both doctors said i was too young but they had seen it happen before regardless of age. Doc also mentioned another possible diagnosis but because i had already started steroids he couldn't do the blood test and didn't want to stop steroids incase of GCA .

    Good luck, hopefully if the consultant was very worried he would see you sooner than 2 months?

  • Having a negative TAB does not rule out GCA - having a positive one, on the other hand, is proof that it IS. The giant cells they look for can skip sections of the blood vessels or it may not be present in the temporal artery - it affects a lot of arteries but the temporal artery happens to be handy to get at.

  • I was 58 when diagnosed 14 months ago. Had a lot of weird changing symptoms for about a year before that, which in hindsight, I think was the beginning of my PMR.

  • I was diagnosed in December 2014 aged 51 and half exactly but I now know Pmr was brewing for at least a year before hand as I had problems with pains in my neck and shoulders and an almost constant headache. I could.never get comfortable in bed and used to dread having to go to bed. A sinus operation in November 2014 finally beought the Pmr to the fore and I was in complete agony for 4 and a half weeks until diagosis. The pred was a miracle although it took me another 2 months to be able to go back to work due to recovering from the fatigue of all the pain. The fatigue continues to be a problem and am currently off work this week due to exhaustion. Compared to some I seem to be struggling to reduce the pred and am currently on 9 mgs from 15mgs in December. The lowest I got to was 8 and a half for 2 weeks before the pains all started to return.

  • I was diagnosed at 54 with pmr and gca at 58, still have it.

  • I was given a probable diagnosis of PMR just before my 49th Birthday. I already had fibromyalgia, so initially it was thought I was just going through a bad patch with that. I responded fantastically to 30mg of pred, but struggled to reduce. My rheumy believes I have a combination of PMR and seronegative RA, so I'm on methotrexate as well which is helping. She has never ruled PMR out, as she says that although it is more common in older people it can happen in people under 50.

  • hi i was 59( March) but i am sure if i had of gone to the Drs 5-6 years ago when i was a stiff and sore . hips thighs back and neck i may have been on Pred then

    i was started on 20m for 2 weeks and it was a miracle drug worked in 6hrs

    now reducing and trying 9mg

    good Luck :)

  • People as young as 38 have been diagnosed with PMR, so their argument doesn't hold water. Granted there aren't very many, but that could be because they are initially misdiagnosed in the early stages. I believe that as the condition becomes more well known and recognised we will see more and more younger people diagnosed. Personally I started symptoms at the age of 50 ish, but I didn't go to the doctor's for a couple of years about it and then I wasn't diagnosed immediately.

  • I was 46 when my pmr started, followed 18 month later with GCA. I'm now 50, both are still going strong 🙂

  • Hi I'm 55 and was diagnosed 5 weeks ago. Down to 10mg from 20 and this is day 3 of 10. Had trouble sleeping last night but other than that SO far so good. Lucky enough to have private medical cover and seeing rheumatologist againtomorrow getting bone scan results.

  • I was diagnosed 6 months ago I am 55 but looking back I've had symptoms probably since I was 54.

  • I was still 51 when the very first symptoms appeared. Took 5 years to get a diagnosis and even then it was disputed! The international guidelines say quite clearly that it should be considered in any patient with relevant symptoms who is over 50. And GCA has been proven in more than one far younger patient - and the oft-quoted case was in a 37-year old man. And it was definitely GCA since it was the pathologist who found it.

  • I was 75 when I was diagnosed - never heard of this disease before and was advised that it usually hits women in their 70's. I guess that has been knocked into a cocked hat now that people are being diagnosed in their 40's, 50's and 60's. We're all in this together and this site is great.

  • Symptoms started at 52, diagnosed at 53, am now 54.

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