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Polymialgia and treatment with steriods

Posted , 5 users are following.

gwennym
gwennym

Hello there sufferers, I started with Polmialgia withour knowing.It was only by asking my doctor what I had that made me feel so ill and in pain all the way round my chest with nasty headache. My legs hurt so much and my feet felt swollen. My GP put me on Prednisalone and within a few days I felt marvellous. During this time I had to do a test on a running machine for a test on my heart because I was having trouble breathing on standing up after having been sitting for any length of time. Of course the maching showed that I did marvellous because I was on the predisilone. :roll: The specialist wont know this if he doesnt read what drugs I was on :!: I am just suffering my second dose of Polimyalgia and feel lousy with pains around my chest and in my legs and also coughing up some muck from my chest. Hope sufferers out there are coping but not a lot of people know about Polimyalgia and they dont believe it can be so horrible.

3 likes, 7 replies

7 Replies

  • Guest
    Guest

    Posted

    gwennym

    Sorry to see that you are having a second go at PMR. How long were you free of PMR?

    Have you seen a Rheumatologist to confirm it is PMR back again?

    I also can be very breathless when rising from sitting - but then I realised a part of the problem was water retention.

    I don't know anybody in my circle, with or without PMR and GCA, who has not had a cough and coughing up muck this year. Mine started 29th December and its still with me - although I now can sleep for a couple of hours, before waking up as I have slid down the bed. Propped up is better for me.

    There are quite a few of us 'out there' and there is a new National Organisation called PMR-GCA UK in the process of being set-up and should be launched, with charitable status within the next few months the aim is research into cause and cure or friendlier medication and, most important, support and self- help groups.

    So, I know of nearly 1,000 sufferers who are either in a Support - Self Help Group or in contact by email. So hang on in there - we will get there eventually and you will get through this once again.

    mavru (used to be Mrs K)

    • beatrice74480
      beatrice74480 Guest

      Posted

      I have had PMR for 21 months and on Pred they have worked for me so far, put up with a weight gain of 7lbs and a puffy face, now I am struggling on 3 for 3 days and 2 for 1 day, it seems to be not too bad but I suffer with the hand pain, and some neck discomfort, occasionally take paracetomal and at this stage think myself lucky. However what concerns me is that I get up in mornings not too stiff in shoulders and not painful really but as soon as I take pred symptoms seem to kick in, I feel better the days I am 2 but dont want to risk a flare up.It also is affecting my energy levels as I reduce, I am 75yrs of age , very active and play Crown Green bowls Summer and Winter, against men I might add. Any suggestions please would be helpful, at the end of day my energy levels are very good
    • grey_lady
      grey_lady beatrice74480

      Posted

      hopefully nearly at the end of my PMR now on after 18 months . 3gm pred per day , will try and lower to 2 next month ,when I lower  I get sore for a week or so I use co~ codomal when bad at night as seems to help me next day , but I prefer to be using parecetamol morning and night, I am a diabetic  and have a few other probs but keep going on. I try to get exercise and am planning more now feeling better ,stay on  2 pred for a few weeks ,slowly, slowly  cuttng down is the best plan  1 grm per month your body will tell you if you are overdoing it (I am coming up 69)
    • beatrice74480
      beatrice74480 grey_lady

      Posted

      Saw my doc this week as I am down to 2 pred daily and no symptoms at the moment he wants me to stay on 2 for a month and then 1 for 2months so hopefully by April pred free which will be two years exactly from when diagnosed. Although he did say avoid stress as it triggers things off ,as my husband has memory loss to a degree not entirely possible
  • masjid
    masjid gwennym

    Posted

    Hi Gwennym,  So sympathise - had similar problem which started over 10 years ago.  At that time a blood test was used to confirm, but mine proved negative, so only other diagnosis was assumed to be fibromyalgia.  However goalposts have now been shifted and PMR doesn't necessarily have a positive test, so I have also been on prednisalone, which I weaned myself off over 8 months.  Since then, I have recently suffered a broken wrist and been diagnosed with osteoporosis.  Have to confess I obviously failed to notice that the use of prednisalone over an extended period, i.e. more than a few months, can have a detrimental effect on bones!  Just mention this to make you and maybe others in the forum aware of the downsides of steroids.  Good luck, Masjid
    • ptolemy
      ptolemy masjid

      Posted

      It is normal for people diagnosed with PMR to have a DEXA scan to check bone density. I had mine about three months after diagnosis when I had been on pred for three months, luckily I was OK so I just take vit D and calcium.
    • masjid
      masjid ptolemy

      Posted

      Hi,  Unfortunately, I was not given a DEXA scan and it wasn't even suggested and due to my age (oap's take note!) even having suffered a broken wrist, it wasn't even suggested then, the assumption being that everyone over a certain age, must have osteoporosis.  I therefore paid for it myself - cost at my NHS hospital was £178 - as I wanted to have a more accurate picture of what was happening to my bones.
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