Pammie, JustJayne, Morwe, Mrs K and Kate:11 March 2010

Posted , 4 users are following.

3 years ago in November, five people who posted on this site - got together and formed pmrfighters. On 10 March 2010 a new Charity will be launched called PMR-GCA UK.

The five people who posted on the site - still do - and have learnt a great deal since that time.

We will all be together in London the day after (11th) and from 11am - 4pm will be in the lounge bar at the Premier Inn County Hall, Belvedere Road London, SE1 within walking distance of Waterloo station and loads of buses.

Email us on this site and let us know if you might come to see us and have a chat. There are no freebies, pay for your own liquid refreshments. We just thought you might want to meet up with other people who have PMR and GCA.

0 likes, 5 replies

5 Replies

  • Posted

    I love this site even though I seldom comment. The PMR fighters are a wonderful group and your tireless and helpful replies are great. If I could be in London on March 10th I'd be with you just to meet you all. I just passed my third anniversary with PMR and thought I was starting to conquer it (3mg dropping to 2.5) when my last bloodwork showed that my CRP had gone up. At the moment I am alternating the two doses with more bloodwork scheduled soon to determine what we (my rheumatologist and I) should do next. It's a discouraging disease but what can one do but press on?

    Ironically I was visiting London in January and was knocked flat on my face in an underground station by a young woman who ran in front of me. I was cut, subsequently sported two black eyes, and probably cracked a rib or two. I wonder if that very hard fall could have contributed to the rise in my CRP? Has anyone had experience with a relapse following a bad fall or other accident? Best wishes to all. You are the greatest.

    Jill

  • Posted

    MsJH

    Yes, I did - I fell and my CRP shot up like nothing on earth. Luckily no other symptoms of GCA appeared so after much discussion with my GP, we put it down to the fall and held off putting up the steroids. One month later, bask to where it had been.

    My CRP also shot up way beyond when I had a kidney infection. So now if anything goes awry, we put the GCA on one side and pretend I have not got it and treat whatever and wait and see of the GCA symptoms appear. So far so good. But then I have not had anything since the kidney infection. Fingers crossed.

    Maybe our paths will cross some day.

  • Posted

    Hello Jill

    It sounds as though you are at a similar stage of PMR to me - for me 4 years PMR (the first year undiagnosed and therefore untreated) and another 3 with GCA/PMR, and steroids, and, like, you, I have just reduced from 3, taking 8 weeks this time to do the tapering, finally reaching 2 about 10 days ago. I've had a few painful days, mainly with the top of arms and neck area but thankfully today that's eased. I have blood tests and rheumatology appointment next week so I'm crossing everything that my body is adjusting to the lower dose.

    As to your question re falls, yes I have had a couple of falls and like you, both have resulted in relapses with increased CRP/ESR and pain. In fact, I put my initial PMR down to injury to an already damaged spine following a heavy tumble off a train. A station near Epsom in Surrey has the most unusual deep drop between the train and the platform which has had publicity but apparently nothing can be done about it (or they won't spend the money!!!). It was dark and I wasn't familiar with the station, and, no, I hadn't been drinking :wink: just lots of cuppas at afternoon tea at a posh London hotel celebrating my friend's birthday!!!

    I remember a long time ago someone posting on this site said that she thought PMR was caused by soft tissue injury, which could be borne out by my accident, and I do know of people who have succumbed to PMR following surgery.

    Yes, it would have been lovely to meet you in London on 10/11th March, but we will post and let you know all about it, I'm sure.

    Very best wishes and do hope you are successful in being PMR-free soon.

    MrsO

  • Posted

    Mrs K, will definitely try and get to London on 11 March and have the opportunity to talk with fellow sufferers of this debilitating complaint.

    Am presently trying to reduce steroids from 30mg a day down to 27.5mg (got down to 15mg before Xmas) and am having 1st appt with Rheumy on 22 Feb, although from reading postings, it seems to be a case of more steroids when pain is bad and less when it isn't - its your choice!

    Interesting reading about could injuries start/affect symptoms. I had a bad fall and broke my wrist just over a year ago and had to have it plated and pinned and it was not long after that I started with PMR although it took 6 mths for diagnosis and then it was me who suggested the condition to the Doctor!

    Anyway best get on with some work and especially as last week my 2 bosses told me how well I am looking to which I gave no reply but just smiled sweetly!!:lol:

  • Posted

    Thank you Mrs O, Mrs K and Yvonne for all your helpful replies. I hope that my blood tests later this month will show that my CRP has stabilized. Obviously a bad fall, illness, or surgery is a terrific shock to the system. Such things also make us more vulnerable to viruses if indeed that is what triggers PMR. Interestingly enough I used to visit Sweden a lot and I came down with PMR right after a January visit to Sweden where I seem to remember I fell on my knees on an icy road--not too badly I thought at the time but who knows--and the road was certainly very hard! This anecdotal evidence is hard to pin down. A neighbor ( a mid-seventies man) was diagnosed recently with PMR, though it seems to be a mild case, and he had fallen in the woods while walking his dog. He subsequently complained of pain in one shoulder and was treated for that for a short while until the doctor thought of PMR, probably because of other symptoms. One dose of Prednisone and the fatigue, pain, and malaise lifted. He is doing well with treatment. Still it is hard to avoid falls. None of us falls on purpose or willingly and it could be that we have the PMR first and it makes us tired and prone to lurching and then we fall and the PMR gets worse and we get diagnosed. I usually don't bother about what caused the PMR because I've got it and I must deal with it. Sorry about the long reply. Have a good day.

    --Jill

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