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Contributors' Brief Histories

Posted , 46 users are following.

EmisModerator
EmisModerator

A thread for users to put a precis of their story.

EMIS Moderator

9 likes, 200 replies

200 Replies

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  • mrs_k
    mrs_k

    Posted

    I am a GCA person only. I do not have PMR.

    I was nearly 69 when I started out on this journey am now 73.

    Diagnosed Feb 1969 started on 60mg, two flare ups in the first two years.

    July 2011 now on 2.5mg and hoping.

    Member of PMR & GCA UK North East Support Group, which is a registered charity.

    Mrs K

  • Nefret
    Nefret

    Posted

    PMR diagnosed at age 57, but had it for some time before diagnosis. GCA diagnosis followed 4/5 years later. Have been on Prednisolone for 9.5 years now in varying doses. Also on Methotrexate.

    Have accumulated a fair number of accompanying conditions on the journey, late-onset asthma, T2 diabetes, spinal osteoporosis, Polyarthritis, Fibromyalgia - plus a few more odds and ends.

    Currently helping to set up a Support Group in my area - we seem to be getting quite busy!

    Nefret/Catie

    • hope4cure
      hope4cure Nefret

      Posted

      We have a support group in oir area thru the hospital.. It a gps way to meet people same health issues. Every month we have a special speaker to help on any no of things to help. Sometime we meet at the aqua center and do water exercises taught by a volunteer PT expert.

      TC.

      CHEERS

      HOPE

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    I was diagnosed with PMR and GCA in 2007 at the age of 65 and prescribed a starting dose of 40mgs Prednisolone.

    Now, 4 years later and with a couple of flares along the way, I have reduced to half a mg a day.

    I am a member of the new Surrey Support Group and also of the National Organisation, PMRGCAuk.

    MrsO

  • fiftiesgirl
    fiftiesgirl

    Posted

    PMR diagnosed in December 2010 at the age of 59. Had it for many months prior to diagnosis.

    Prednisolone starting dose of 15mg, upped to 20mg to control symptoms. Slowly reducing 1mg a month and now successfully and comfortably on 12mg.

    Member of PMR & GCA UK North East Support Group.

  • Dublin,_Ireland
    Dublin,_Ireland

    Posted

    PMR diagnosed in April 2010 at age 51. Also have osteoporosis of spine and Pernicious Anaemia.

    Started on 40mgs pred with a couple of flares in 1st year that interfered with reduction.

    Could not get below 10mgs and diagnosed May 2011 as also having \"Late Onset Rheumatoid Arthritis\" so now taking Methotrexate 20mgs weekly with Pred 10mgs daily.

    Pauline.

  • RD_Swede
    RD_Swede

    Posted

    Was diagnosed in April 2005 – pmr and GCA. Started on 20 mg, which I later understood was too low dose for GCA. Managed to get down to 10 mg easily and also 5 mg. Then it took me a year to get below 5 mg. I started thinking of how to do it and then came up with what has been called Ragnar´s method on this forum (see more on Our stories on the pmr-gca-northeast.org website). For somebody who doesn´t succeed, it is of course possible to extend the tapering even longer than I did. I was free from pred in December 2008 and have had no flare-ups.
    • hope4cure
      hope4cure RD_Swede

      Posted

      THANKX for sharing UR web site enjoyed it tremendously.

      in the US.

      Cheers

      HOPE

  • Mrs_G
    Mrs_G

    Posted

    I had PMR for the first time in 2002 when I was 54 It started slowly but gained speed rapidly and by the time I started my steroids in Oct 2002 I was having difficulty with any movement The steroids worked like a dream for me I started on 20mg and was on 1mg in 12 months I was left on that for a further 15months and the only side effects I had was weight gain and tiredness which was probably steroids withdrawel

    Clear for over 3 years than back again Bloods much higher this time Started on 20mg in October 2008 got to 4mgs in 14 months then back to 15mg in 15 months ! Roller coaster since then Now trying to get below 4 mg for the 2nd time It will be 3 years since this new bout by October this year

    I have to have bloods under 5 to feel well although the normal range is much higher

  • MsK
    MsK

    Posted

    I was diagnosed with PMR in June 2008 after a stressful year.

    My initial blood test results:

    ESR: 84

    CRP: 58

    I was prescribed 10 mg Prednisolone with good effect. This was reduced to 7.5 after two weeks.

    Due to my sensitivity to Prednisolone I decided to come off it which took me about 10 months.

    Around the same time I was diagnosed with osteoporosis and osteoarthritis.

    I reduced my pain and stiffness by approx 50% through a change of diet, gentle exercise, acupuncture, pain killer (paracetamol). A low carb diet helped me to decrease my inflammation. I take Vitamin D3 regularly.

    I still have good and bad days.

    My latest blood test is fairly good:

    ESR: 28

    CRP: 17

    I try to keep up my appearances and stay positive.

    This forum has really helped me a lot.

    MsK

    • Jlmitch2004
      Jlmitch2004 MsK

      Posted

      Hi MsK, could you tell me more about your change of diet?  My mum has just been diagnosed and I'm trying to research PMR to understand it and help her improve her current condition.  She has lost a lot of weight and is very weak.  Thanks,  Jayne
  • mollycoo
    mollycoo

    Posted

    Diagnosed October 2010 at age 66. Mostly rear thigh pain, hardly any neck/shoulder/arm pain. Put on 15mg. Started reducing 1st December, 1mg at a time, 2 weeks on each dose until 9mg, then reduced by 1/2mg at a time until 7mg, then new dose once weekly then twice weekly and so on, now doing 6665 next will be 665 then 65 then 655, 6555 and so on until down to 5mg. It's very slow, but so far very sure. I'm told I shall need to hold 5mg for some considerable time. No flares so far, just some days more painful than others! At the last blood test ESR was 15, CRP 4.

    Molly.

  • BettyE
    BettyE

    Posted

    [quote:f4e7cd0d5f]Like Mrs.G. I am in my second dose of PMR. First time aged 67. Clear after 3 years. Returned 5 years later.

    FIRST TIME

    Severe initial pain in arms completely and immediately controlled. Starting dose 30mgs. 2 or 3 glitches during reduction but nothing prolonged. Some sleep probs, slight moon face raised BP for a time temporary hair loss were only adverse effects of Prednisolone. No weight gain. Felt well.

    SECOND TIME Pain never completely controlled. Starting dose 15. Reductions more of a problem. Severe and serious side effects meant I was weaned off steroids for a time but had to go back on 15 due to pain. Mood swings, panic attacks, raised BP extreme muscle weakness. Felt very ill until GP suggested taking Pred. at night.Unusual but worked for me.

    [/quote:f4e7cd0d5f]

  • EileenH
    EileenH

    Posted

    The first real symptom that sent me to the doctor was thigh claudication when I used the crosstrainer in the gym when I was about 52 but most of that summer I had noticed increasing difficulty doing step aerobics - I had no \"spring\" in my feet! Then bicep pain when carrying things on my arm started. Over the next five and half years I returned to the GP as joint pain and tendonitis developed - \"Your bloods are normal...\" was always the response.

    After a TGA (transient global amnesia) two and half years ago the PMR hit me like a ton of bricks but the bloods were still normal - so according to the GP there was nothing wrong. After 3 or 4 months of reading online I had a eureka moment whilst reading a medical blog where a GP described a patient, wondering what he should do. She had PMR, responded in hours to pred. Her symptoms were so like mine I asked my GP who then referred me to a rheumatologist who grudgingly gave me pred for 6 weeks. I took the first dose at 10am and at 4pm was able for the first time for years to walk downstairs like an adult not a toddler. The rheumy wouldn't listen when i told him about the dramatic response to pred but another GP in my practice was convinced enough to continue the pred.

    I have been down to below 7.5mg per day briefly but do much better around 8.5 to 9mg, although I took it as 17.5mg every second day. I recently was put back to 15mg because there is a query of possible GCA - which may be the reason for the difficulty getting below 9mg.

    I have a background in medical science and use that to research the questions you ask and try to give you some answers and explanations. I have learnt so much and met some great people through the forums so I hope you don't mind me spouting at you :wink: :lol:

    EileenH

    • Danrower
      Danrower EileenH

      Posted

      I've reread your entry here, and we have very similar profiles: blood test in the "normal" range, unexplained symptoms for years, so functioning normally. Then a traumatic event which precipitates PMR flare. My first encounter was @ 52, with a fall while skating, fully torn rotator cuff. 3 weeks later, PMR flare, never diagnosed. I thought I had Rheumatiod onset. It resolved  in about 8 months, while I recovered from shoulder surgery. Fot 10 years I had mild , transient symptoms, (hips mostly). Untreated and undiagnosed.  Last year, unexpected unhappy divorce, settle in 2 months, 1 month later, The BIG PMR. I think stress is a misnomer for precipatory event, I think trauma would be a better description. Perhaps your TGA was traumatic? !!! Of course. I am looking for patterns. Solutions. Thanks Eileen.
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