Recently I have been reading a number of sad cases where PMR sufferers have had trouble convincing their GP (or Rheumatologist) that they have PMR. This set me reflecting on my own case.
It was the fact that I mentioned to (a young locum) GP that my sister has PMR that encouraged her to investigate my pain. She did all the tests, confirmed my PMR (I suspect she was up-to-speed anyway) and put me immediately on prednisalone.
So, just a tip - look at your families to see if anyone else has PMR and mention it (loudly) to your GP. It's not a proven fact but there is a suspicion that there might be a genetic connection.
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ChinaWuntoo
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This is good advice. My great grandmother went blind and experienced dreadful headaches. There just weren’t the diagnostic tools back then. On the other side of the family my paternal grandmother lost her sight with deceminated sclerosis type symptoms. My Rheumatologist was interested in this history and it prompted a head MRI scan. This eventually led to my own, less than obvious diagnosis of LV/GCA.
Nothing of concern. My Rheumatologist said that they weren’t very good for GCA because the brain is too active, always lighting up, I think she said. My eventual diagnosis was by Ultrasound. The MRI was part of a process of elimination.
I THINK a plain MRI doesn't show much except structures, for inflammation they need to use high resolution MRI and contrast. Recommendation 4 explains it (in medical science-speak)
Yes! My brother has it and one of my doctors at the practice I attend, has a Father and a Sister with it. There is definitely a genetic connection.
All my immediate family have died in their sixties. My father and two sisters from cancer, so know that is genetic, but also lifetime choices....all were smokers. I've never touched alcohol or ciggies, so maybe I will dodge that bullet !!
My GP completely missed my PMR. I ended up through the awful pain that I couldn't stand any longer took myself off privately. Firstly a private GP who suspected PMR or RA. Then I saw there resident rheumatologist....loads of blood test taken and X-ray, and yes PMR was diagnosed. Dreadful that I had to pay out a lot of money to find out something my GP should have known. I then went on to get GCA after tapering to 8 mg from the original dose of 15 mg. After taking the first 3 tablets (15 mg) the pain that I'd suffered for months and months and over Christmas too last year vanished. Really hoping after having taken 40 mg to protect eyes from GCA that when I finally get down to 8 mg again it won't rear it's ugly head
Not sure how much we should blame our GPs. Which is why I posted this about family - it's a good clue for them. But of course, I suppose that most people with PMR don't know about this Forum until after diagnosis - more's the pity - and may not think to discover whether other family members have PMR.
I'm not really defending GPs (or perhaps I am) because (a hobbyhorse of mine) if they are older or if they are trained in the southern hemisphere they probably didn't cover it in their training. It seems from anecdotal evidence that young GPs trained in UK are much more likely to recognise PMR.
I'm on a very slow taper from 10mg to 9mg and so far so good. Except for fatigue, dizziness and lethargy!
"It seems from anecdotal evidence that young GPs trained in UK are much more likely to recognise PMR."
It may well also depend on the medical school but at some of them it is almost certainly due to the energetic activities of the former NE PMRGCA charity about education.
Both my maternal grandmother and aunt had something they called rheumatism. As a child I remember them both suffering similar symptoms to me. My Aunt was always tired and often couldn't get out of bed. My grandmother couldn't walk far and used to waddle like John Wayne in a nappy! All things I recognise now I guess it's possible they both had PMR.
I didn't meet my father until I was in my thirties. He told me about his mother who had rheumatism and went blind! I guess that could also have been PMR.
So looks to me like there could be a family connection with the women in my family.
hi yes my husband had pmr 8 years ago it came back about 9 weeks ago and they are treating him for arthritis which he hasnt got ,we had to change doctors surgery as are old one closed ,so we no longer see the doctor who diagnosed him 8 years ago . everything is the same the pain in shoulders very little sleep but cannot convince doctors its pmr its like living in a nightmare , nobody wants to go on steroids but its the only thing that can really take it away
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I guess it's possible they both had PMR.
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