medscape.com/viewarticle/au...
It is reasonably easy to read and definitely one to keep in the armoury for when you meet an ignorant doctor who tries to imply symptoms are "all in your head". It isn't acceptable and is something to put your foot down about.
It would be so good if some doctors were made aware of the importance of a correct diagnosis. I suppose they make mistakes on young people with cancer etc who go back to them dozens of time, who then die due to mis diagnosis and it still continues to happen.
Thank you so much for including that link. We realise that our Mother at 78 was misdiagnosed in Jan 1998.
She woke up with the classic shoulder pains of PMR and went to a private hospital to a bed overseen by a well known Rheumi. He did various tests but did not try steroids. Getting fed up he referred her to a Psychartrist. He said it was Histerical conversion syndrome. Our mother knew this was not correct as she taught psychology and knew it was vascular or the like.
Sadly we believed the medics and to cut a long story short she died in the June. An autopsy was carried out because a reason of death could not be agreed in the NHS hospital where she ended up.
Now having PMR myself and remembering our Mother had suffered the same in 1990, I am very convinced that she had PMR again.
It has been a real learning curve for the family but even so my own GP left me undiagnosed for 7 months until I asked for a ESR test She kept telling me I was old. I wish I had insisted on a second opinion for our Mother and myself for that matter.
AI is coming. I am easily diagnosed with PMR by AI.
Perhaps we can get rid of the rheumatologists and replace them with AI!!
We'll have to amend the stuff online so it gets ALL the finer points. I use it a bit but always check it and there is ALWAYS something that goes so far but not far enough.
Thanks for this Pro. Will you post it on the Lupus HU forum too?
Already on mentioned on there-know PMRpro will read this-
healthunlocked.com/lupusuk/...
Here too wasn't it? But the article in Medscape was easy to read I thought
Yep,it is…
I read an article recently that research is ongoing that is showing that Fibromyalgia is an auto- immune disease!....oh dear....if so there are an awful lot of mis-diagnosed people.....it wouldn't surprise me though....
Been disputed for a while - I suppose one of them has to be right!!
sciencedirect.com/science/a....
But interest is increasing - and might well account for the people like you who are told it is fibro not PMR but pred does help. There is an overlap with other diseases anyway but it may go further than that,
I was diagnosed with Fibromyalgia in 1997 but don't really feel it's relevant. Maybe because there's So many issues overshadowing it?
Janet
Complicated situation, but with me steroids have helped which with Fibromyalgia they are not supposed to!
Very interesting article. I've had PMR since October 2009, just after my 59th birthday, and was put on Pred in July 2010, and am currently on 4mg per day.
The long time between onset of symptoms and eventual diagnosis was due to the 'specialist' at Barnet General Hospital, who knew I was suffering extreme pain and stiffness, yet was reluctant to come up with any kind of explanation for it, and I can't remember him ordering any tests other than ESR. The ESR was 60 something, so he knew something was going on, but he told me he didn't want to put me on steroids because I'd be, "on them for years."
Eventually, after he'd tried various things, including strong painkillers, diclofenac, and even steroid injections into my lower back, he finally gave up and put me on Prednisolone, at a starting dose of 15mg per day. The difference was immediate! The day after my first Pred dose I was leaping around like a teenager, with no pain or stiffness at all. I'd got my life back!
Since then I reduced my dosage over time to 4mg per day, and despite having to vastly increase the dosage temporarily due to 2 episodes of GCA, managed to reduce back to 4mg, where I was stable.
When I was seen by a rheumatologist 2 years ago (for the first time in 13 years!), without any form of physical examination, or even asking me any questions about how I was, the first thing she said to me was, "You don't have PMR anymore!" My immediate reply was, "Have you told my PMR that?" Which shocked her somewhat, and she was much less aggressive after that.
She had decided that just because I'd been on Pred for a long time, that the illness had gone into recession, even though she had done no investigation to prove this. By the end of the meeting, I agreed to try and reduce my Pred, even though I'd been stable for several years on 4mg per day.
Anyway, I did reduce to 3mg per day, and over a period of a year gradually lost my energy, strength and stamina, to the point that I was virtually housebound, and very depressed. So at the end of last August I decided to increase my Pred back up to 4mg per day, and have now stabilised once more, although still rather low on energy and stamina, despite my strength returning to more or less previous levels.
It annoys me that just because they read a few hard to digest books about clinical diagnosis years ago, they think they're experts, but a long time ago I was told a truism, and it's this;
If someone tells you they've got 20 years experience, it means they have 1 year's experience, and it's 20 years old!
The high status medical people get in society is in their heads, not mine. To me they are service personnel, who should try to keep their customers (patients) on side, and not talk down to them.
So now I treat medical professionals the same as I treat the bus driver. As long as he/she sticks to the route I want to follow, I'll thank them when I get off the bus, but if they deviate, or mess me about for any reason, then they get no thanks from me, even if they eventually manage to get me where I was trying to go in the first place.
Sorry for the long rant, but as I've had 2 'specialists' muck me about, I felt it needed saying.
"If someone tells you they've got 20 years experience, it means they have 1 year's experience, and it's 20 years old!"
I like that!! I have atrial fibrillation and woke with a pulse of 190+ one Sunday morning, a few days before my husband died. Even I wasn't going to "wait and see" and the emergency crew including doctor blue-lighted me to the local ED where they pumped in a few drugs and sorted it out. The emergency doctor and ED were amazing but I was sent upstairs to the ward for more comfortable monitoring were I was not pleased to see the duty doc was one I had had a few run-ins with over my very sick husband, Luckily, she just announced she would read my notes outside first - and I didn't see her again until about 3pm when she appeared to ask if I would like to spend the night there or go home. I restrained myself from saying "not b£^^&$ likely" and elected to go home to my dying husband. She then handed me a discharge note and revised medications list, announcing she had stopped all my cardiac medications!! Asked why she informed me "they are obviously doing nothing", I pointed out I was exhausted and under great stress. Apparently that was my fault. And I got the "20 years of experience" line! Because she had worked in medicine for 20 years, SHE also had experience she claimed I could take the stuff if I liked (I did) and AVOID STRESS. I ignored her, continued with my drugs and requested a PROPER cardiologist opinion. Who rolled her eyes and agreed with me. That doctor and a male senior colleague have a reputation - both of them also confirmed it with their management of my husband. Quite a few locals apparently ask to go to the hospital 30km away to avoid them!!
It took 2 years before a GP who knew her stuff diagnosed my PMR. My own doctor persistently told me it was a wrench injury.
Eventually, I fell out of bed because I could no longer sit up. Full dose ibuprofen had kept me going, but falling backwards in the shower twice because I couldn't balance told me I must see someone else.
I was put on high dose pred and later saw a specialist who diagnosed PMR and sent a stiff letter to my GP.
I had tried to keep working, but my workmates all thought I was a malingerer.
The depression that caused was hard to live with.
I agree, the fact that the longer it takes to get treatment, the more powerful the illness becomes, causing depression and I think that the illness is much more likely to return.
Mine has never left!!!I was a mug, I believed in continuity of care and was a bit slow to recognise the very NICE GP didn't think out of the box. I worked out what it was - but the GP didn't have the confidence so sent me to a rheumy who was fairly useless and obviously thought PMR was beneath him. I refused his offer of suplhasalazine as I was about to move here to Italy but a different GP, a woman who been parttime or on maty leave for years, agreed with me that PMR was pretty likely after a magic response to 15mg pred that the rheumy wasn't interested in. My doctors here have never nagged about pred and I have a top expert now who put me on Actemra which reduced the pred I needed a lot. But I need both.
In the UK, there are doctors and then there are doctors where the NHS is concerned.
I was diagnosed by an elderly specialist. He was pleased with my progress. He retired soon after, and going for check ups after that became a nightmare. I, apparently, was never reducing pred fast enough.
I've been on high doses twice more since the initial one, but only up to 10mgs because I knew it was back so took the extra immediately and it worked. Falling down the stairs twice was not advisable for a woman in her 70s who kept a cat which was prone to diving in front to be first, therefore tripping me up. PMR has always affected my chest muscles making it hard to keep my balance.
The higher doses do affect your appearance and mood, but 5 mgs? I have good bone strength and my eyes are in good shape.
Even the doctor who yelled at me had to confess that my body seemed to like the drug.
You know my story. Diagnosed with PMR for 6 years by my first rheumatologist. It wasn't PMR. It was autoimmune vasculitis. (My blood test for vasculitis was positive. Every year. With rising antibodies. Rheumy 1 still said PMR.)
My new doctor told me I'm the luckiest patient he's ever met because my body is "highly responsive" to steroids. Refusing to come off the steroids Rheumy 1 prescribed likely kept me ok-ish ... until they didn't. I went from clear lungs to interstitial lung disease. I got a pulmonologist who looked at my CT scan and practically screamed: "this looks like vasculitis!" He encouraged me to get a new doctor (with more experience) at a major teaching hospital.
I've had 4 rituximab infusions so far. My CRP and ESR are normal. Everything attributed to vasculitis in my lungs has cleared. I'm down to 1/2 mg of prednisone after 8+ years. There is no sign of active disease. The scarring damage is forever but it's minimal. I need an inhaler now and then. I've had some mid-range hearing loss. My balance is not great.
Pro tip to my first doctor: Apparently PMR and my actual disease present in much the same way in the beginning. You should have looked into it further with my positive test for ANCA vasculitis and my other issues. Instead you said it was unlikely. And would be an uncommon presentation.
I love this PMR group. I got support. I got great advice on steroids and tapering. And I still drop in to visit because of that. My best wishes to all.
All about Arthritis and the Ignored foods that can worsen arthritis
feels like a vice
PMR misunderstood by the medical community
