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Hi...I my Mum has PMR and can't take Steroids..She is very depressed...Any advice would be great:}

Posted , 7 users are following.

jane37519
jane37519

She has always been life and sole of the party. This not my Mum very down and crying ....

0 likes, 21 replies

21 Replies

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  • lodgerUK_NE
    lodgerUK_NE jane37519

    Posted

    You have been given good advice by Eileen, however one thing that I would mention.

    If your Mother does not take the pred and struggles on, there is a higher risk of GCA raising its head and that is something that no one ever wants to happen.   If you download the British Society of Rheumatologists Guidelines on the Diagnosis and Treatment of Polymylagia Rheumatica (you have been given a link by Eileen to follow), then you will see exactly what you and your Mum are dealing with.

     

  • Sheilamac_Fife
    Sheilamac_Fife jane37519

    Posted

    One of the main side effects from Prednisolone that I have is breathlessness. Of course, I hate it, it is a nuisance and I have to tailor my activities to allow for it, but oh my, I will have that any day over the pain, stiffness and utter misery of untreated PMR. As I see it, it is not forever. I couldn't be active with the PMR pain and at least now, there's lots I can do. I still have a life. I am hoping as the dose comes down that these side effects will lessen.

    i have to say that I found the breathlessness intolerable at first. It was also very frightening! I was on here, asking if others had it as well, but I am used to it now. It bothers other people more than me now.... 

    I imagine your mother is mourning the loss of 'self'. It took me quite a few months to reach the 'acceptance'  that someone else spoke of, but it is essential. We are not what we were. We cannot do as much as we did or just when we want to, but a new version of yourself cones along and if not wonderful, it is ok and as I said earlier, it is not forever! We are not terminal. It could be so much worse. I thank God for Steroids, they gave me my life back!

    Before I was diagnosed, I used a tens machine which enabled me to move a bit. Also found the Aqua aerobics helpful, with a little help from my daughter with the dressing and undressing... I also followed an anti inflammatory diet, still do to some extent. Particularly when I am reducing the Prednisolone.

    How old is your Mum and does she have other medical problems? 

    I do hope that that we will find her on here to chat to, one of these days. It's great to speak to people who have been there and truly understand. It helped me to get things into perspective. So many people are so much worse off than me. 

    Tell her her that we are thinking of her. X

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