How did your PMR start ?

Hi veronica. I had a very bad cough for about 3 weeks in March 2014 which the doc put down to a virus, it took a couple more weeks to recover from this but within 4 weeks of that I woke one morning unable to move my legs. It took another 2 weeks to confirm PMR but I am sure it was the virus that triggered it. Dave

Hi Veronica I'm very interested in this as well, I believe it is a virus that brings it on, I started off with a pain in right side of neck, and then real bad flu like symptoms had that for 3 days and then pains in my thighs until I couldn't walk, to cut a long story short, I was seen by rheumatologist and was diagnosed with PMR and was on 20mg pred for 2 weeks, but they reduced every 5 days when I got to 12.5 pred i went to eat and couldn't open my mouth and couldn't eat and then noticed arteries bulging out at side of temples and then terrible headache, I was admitted to hospital and my dose was increased to 60mg had a biopsy and was positive for GCA , I was in for 4 days and felt good leaving hospital no pains, but next day terrible headaches,

I went back to hospital I don't think they wanted to increase my dose so prescribed strong pain killers but didn't help I was crying with headache, I couldn't put my head on a pillow,

A week later I lost vision in right eye for 15mins had 3 episodes of this, so they increased my dose to 80mg and was fine except for side effects of pred, that was a year ago, I'm down to 12.5mg pain in my neck came back but is gone by about 4oclock in day it's not that bad so that's where I'm at. Hope we all have a good year

Sorry this is so long

No illness. No vaccine recently. Did have a knee replacement in September tho. Symptoms started in early December so...who knows?!

Sometimes there is no reason. People get sick. That's life. 

Had pains in my arms for about a month and it got that I couldn't comb my hair, then started getting 'odd' pains in shoulders and hips.  No colds, no virus (beginnng of June).  Thought I'd ask the doctor what it could be.  He listened intently then said "I know what it is, but on the safe side we'll wait for the results of a blood test.  He rang me up the following day and asked me to go to the surgery.  That was that - PMR.  That was four years ago.  Have had several flares (usually when I got to 5 mgs of Pred), even now am  back to 7 mgs.

PMR is not the illness - it is the name given to a set of symptoms and there are various reasons which need to be ruled out before the diagnosis of polymyalgia rheumatica as we mean is given. It would perhaps be better called a syndrome or pred-responsive PMR.

It is almost certainly a vasculitis (inflamed blood vessels) affecting the very small blood vessels called capillaries which are found in the muscles and that leads to reduced blood flow and poor supply of oxygen and nutrients to the muscles - they don't work as well and the reduced blood flow doesn't clear the products of metabolism away as efficiently. This all leads to the poor muscle function and aches and pains after overdoing it - like having done really strenuous exercise.

It is also almost certainly an autoimmune disorder: that means that your immune system doesn't recognise your body as "self" and attacks various tissues by mistake, as if they were foreign invaders like viruses or bacteria. There are many autoimmune disorders - RA, Type 1 diabetes, MS and many other forms of vasculitis, most of which are far worse than PMR as they cause serious organ damage. That isn't to dismiss PMR as nothing - but it doesn't usually lead to longterm organ damage.

Autoimmune disorders are probably triggered by a whole load of different factors - and the final trigger that makes the immune system go into overdrive can be pretty much anything. There is some genetic link - if you have Scandinavia genes you are more likely to develop PMR/GCA - wherever you live. There are clusters of it occurring - but that may just be that an environmental factor or infection forms the final straw that breaks the immune system's back.

Some recent work suggests there may be a link with herpes in GCA - but again, that could be just one of the factors, not everyone who has herpes develops GCA.

I was fit, no viral history close to it starting - and started noticing it was more difficult to do step classes, the spring had gone out of my legs. I also couldn't sleep with my arms above my head as I usually did. Eventually I was trying to use the cross-trainer at the gym and got awful pain in my thigh muscles after a minute or two - whereas before I'd been able to do 10 minutes at least. My muscles hurt, a bit like they do in flu, and thigh and biceps were worst. But it didn't happen suddenly, it crept up slowly. I've had a couple of severe flares - but both of then were really more due to myofascial pain syndrome than to the PMR. 

I almost died after a bowel obstruction in 2012 - just after my 70th birthday. I had a very long recovery but somehow ended up with bilateral hip bursitis. This lasted 21/2 years despite PT but got decent relief from trigger-point steroid injections. Last August the shoulders started. I thought it was from a new gym exercise but my pain doc suggested I might have an inflammatory disorder. I didn't believe him. We tried curcumin and I felt worse. During that time I developed high altitude sickness on vacation and needed evacuation home after 4 days on oxygen. I vivited my gp and all blood work normal. I deferred my flu and pneumonia shots to the next week because I didn't feel well. After those shots felt worse with a flu type low grade fever feeling. One morning I had so much pain upon awakening I knew something was wrong. I took Naprosyn to get going and it did help alternating with Tylenol. Went back to my gp who blew me off as fibromyalgia despite blood work showing sed rate 47 and hgb of 11. I told him, after researching the medical literature myself, I thought I might have PMR -- he said no. He gave me gabapentin and practically shooed me out the door. I brought my blood work to a physiatrist and a rheumat who treats me now. 

My anemia was investigated and it was attributed to "anemia of inflammation or chronic disease".

Hi Veronica, I had vague PMR symptoms for 9-10 years which GP dismissed twice. Often took ibrufen for early mornings during these years. Then I was working too hard doing major DIY at home as well as doing other part time work. I caught a virus and carried on working, then – wham, my first major flare and could barely move. Then diagnosed with PMR aged 58. Other interesting thing I often wonder about – I had the flu jab that was in the media about being faulty (I think 2013) only 3 months before this major flare and have often wondered whether it contributed.  All the best with your recovery Veronica and thanks for a very interesting post.