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Experiences with PMR

Posted , 8 users are following.

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Guest

I am taking Prednisolone for Polymyalgia Rheumatica and would be interested to hear about your experiences with this steroid for this illness. I took 15mg for four weeks and have been on 10mg for two weeks. My shoulders and hips improved quickly but my hands, wrists, ankles and feet are still very stiff. I realise it's going to be a long haul and that everyone is different, but it would be good to hear how you are doing. Also about side effects e.g. weight gain--is it inevitable, when does it kick in, can it be avoided/minimised with diet and exercise?

Would love to hear from anyone who is or has been here.

0 likes, 20 replies

20 Replies

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  • Green_Granny
    Green_Granny

    Posted

    Hello Pauline, What a lovely positive attitude! You are so right, and mostly I feel the same except the odd day when I have to up the pred dose!

    My husband retired early, (when there wasn't a recession )and we went on a \"Coping with Retirement\" course. Somebody quoted \"I married him for richer, for poorer, but not for lunch\". Might have been you Eileen!

    Have turned off the central heating here, really mild, certainly no snow.

    Hope you are all at the right temperature for you, Green Granny

  • Mrs_G
    Mrs_G

    Posted

    That is all so true Pauline and very well put

    I have certainly had my low moments When I had PMR the first time before I started on steroids the pain on waking and not beiing able to turn over without crying was frightenning as I had been very fit horseriding Gym etc and I jusy didnt know what it was Luckily that bout went very easily with steroids

    This 2nd bout hasnt and early this year after 15mths on steroids when I went back to square one and with the snow I was house bound and that was also a real low

    Im 62 and now unfortunately have many friends who have gone through or are going through Cancer and I know what my choice would be PMR every time !! My sister in law also has a much rarer immune system diease which she went down with at the same time as my first bout of PMR and she now has very reduced mobility and her bones joints and muscles are in a very bad way so I tell myself PMR isnt so bad ( most of the time ) !!

    I feel lucky I have a very supportive husband and a great Dr as I know a lot of people seem to be ignorred by their Drs

    Im trying to be good with my eating now and have started mild exercise again Ive just come back from another holiday ( have lots ) !! and the travelling was no problem ( this time ) but the extra food and vino was !!!! so back to essentials now

    Thank you also to Eileen It is so helpful to have someone who has the knowledge of all the medical info and jargon

    Best wishes to all

    Mrs G

  • pam41628
    pam41628 Guest

    Posted

    Hi,

    Am selfdiagnosing myself with PMR. Have been getting stiffer over last couple of years (so stilff that getting out of a car after an hour I can't stand straight for a couple minutes. Started having aches and pains in hips and then terrible pain in upper arms especially at night (and can't reach my arms up to comb my hair in morning) Have been following a regime reccommended by my sister (who works in a health food store, and adding ideas from others online. Have noticed after 10 days some relief.

    2 tsp apple cider in water first thing in morning

    1 tbsp 3-6-9 Udo's oil and 1 tumeric daily

    Reduce or eliminate coffee, alcohol, sugar and wheat

    epsom salts bath in evening

    Hot shower in AM relieves stiffness

    Ibuprofen or Tylenol for pain and a spray with Ilex that soothes especially sore muscles

    Anyone else try alternatives to Prednisone? I used prednisone once in my life and hope I never have to again (could not sleep) My daughter took it and gained a lot of weight and got the moon face

    • MrsO-UK_Surrey
      MrsO-UK_Surrey pam41628

      Posted

      Pam, it's good to hear that you have found some relief from your pain with your daily regime, whatever might be your diagnosis.  However, do bear in mind that if you have untreated inflammation coursing through your body that does turn out to be caused by PMR, it is unlikely that you will have any long-term solution.  You could even be putting yourself at risk from other more serious illnesses, including the linked condition GCA/temporal arteritis, which needs a much higher steroid dose to prevent the untreated inflammation causing a risk to your eyesight.  

      The anti-inflammatory foods etc that you are trying can help to relieve the pain and stiffness of PMR - the foods, including turmeric and oily fish helped in my case, but this was alongside the steroids and not alone.

       I spent very many months in bed with undiagnosed, therefore untreated, PMR, and relied on Ibuprofen and Paracetamol just to get me to hospital appointments by ambulance and wheelchair.  I recovered spontaneously within a year, only to succumb a couple of months later to a return of all the pain including more symptoms, and both GCA and PMR were diagnosed, needing 40mg of steroids daily to save my eyesight.

      I really hope tht your present regime works for you so that you don't suffer a similar experience.

      Have you had ESR and CRP blood tests to see if they show inflammation?  If they do, then you need treatment, but even if they don't it doesn't mean to say you don't have PMR - approaching a quarter of sufferers have normal markers.

    • EileenH
      EileenH pam41628

      Posted

      I had PMR for over 5 years from when the first signs appeared and managed with even less than you - no wheat, virtually no coffee as I tend not to drink it at home, not a lot of sugar (never buy sugar and can't eat most commercial stuff because of the no wheat and don't bake). Not prepared to give up wine though.  I couldn't have a bath - I'd never have got out again! Showers were good. Ibuprofen did almost nothing but I won't take it much anyway.

      As I say, I did OK for 5+ years and then the 10 ton truck arrived and I couldn't move. Things improved a bit over the next 6 months but in the entire 6 years I never had a day without pain and my life was VERY restricted, especially in the final 6 months when I was unable to drive for another reason and that left me pretty much housebound for some time. Six hours after taking 15mg of pred I was able to get up the stairs normally, not on hands and knees - literally.

      Three years ago I had a major flare because a new version of pred didn't work for me. I was worse than originally and it took me 18 months after being switched to yet another form of pred to recover to be able to walk for half an hour without crutches. With this new pred I have lost weight and am almost back to where I was pre-PMR even though I am still on a low dose of pred. 

      Given the choice of pred, fat and moon face and constant pain there is no choice. Ibuprofen barely worked for me and left a friend in A&E with a coffee grounds gastric bleed after 3 doses that she was told to take for PMR by her GP. I will not take more than the odd dose for a headache. 

      As MrsO has explained - the pred also acts on the uncontrolled inflammation going on in the body during PMR which left alone can make other cardiovascular illness much more likely, including stroke and heart disease, and also predisposes us to certain sorts of cancer.

      It isn't as simple as pred = bad, no pred = good. I've been accused in the past of being in the pocket of the pharmaceutical business - far from it. But you need all the facts before rejecting pred. And if you are unlucky enough to progress to GCA then please don't reject the idea of taking pred. If you do and the GCA affects certain arteries in the head then you are risking losing your sight - and it is irreversible.

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