Encouragement

Posted , 4 users are following.

I would like to offer some encouragement to all you PMR sufferers. This is my first post for over 3 years when I was in despair because of the effects that steroids were having on my stomach. I could see no light at the end of the tunnel. No matter how I tried, I couldn't reduce the dose to below 10mg without the aching starting again and my ESR shooting up. It was over 100 when I was first diagnosed in October 2006! In February this year I finally took my last prednisolone! That was more than 4 years since I began - much longer than the 18 months that I had expected! Over the last 18 months I dropped my dose very, very gradually and after lots of ups and I finally made it. Rather than cutting tablets in half I took a different dose on alternate days e.g 2mg and 1mg. After a month of that I would then take 2mg twice a week and 1mg on the other five days.

I tried to get as much exercise as I could - even when I didn't feel like it I would go for a walk or a swim. Swimming is excellent for PMR and you feel much better afterwards. Aqua-aerobics is also good - the water supports your muscles.

One thing which helped enormously was one of those heated pads - like a mini electric blanket. Sitting in an armchair with that against my back was wonderful - so comforting!

I hope it may help some of you to know that it is possible to recover from PMR - don't despair! A positive mental attitude is also very important in the fight against this miserable disease! Best wishes to all of you

0 likes, 5 replies

5 Replies

  • Posted

    GrannyAnne

    I often wondered about you and now I know.

    I am so pleased that your PMR has gone away and hopefully will never ever come back.

    Good Health in the future.

  • Posted

    Thank you for that GrannyAnn. It IS hard to believe there will ever be an end to the pains and weariness and the blasted Prednisolone.

    What's the saying? Nil Desperandum or something like that.

    Best wishes for the future.

  • Posted

    Hello granny anne

    It's lovely to hear from you again after all this time and even better to hear that you took the final step to zero Pred in February. We love to hear these 'good luck' stories and really do appreciate you taking the time to post - big lift for everyone's morale, especially the 'newbies' to this distressing disease.

    I have had a journey with PMR and GCA on a similar timescale to your's, starting on 40mgs in March 2007 and now on half a mg with everything crossed that I, too, will get to zero in the not too distant future.

    Like you, I also found a heat pad invaluable in the early days - the outside temperature in this part of the country will do as good a job today, I feel!

    My very best wishes for a future free of PMR - well done!

    MrsO

  • Posted

    Hi everyone,

    thanks for your good wishes. Nice to hear from Mrs K and Mrs O - you both helped me enormously in those dark days when I first came across this forum. Hopefully you will both soon be free from the steroids, but I'm sure you will continue to support others with your posts. I found this site extremely helpful but when I began to feel better I stopped reading it as I found that it focussed my mind too much on my condition. I decided that when I was steroid-free I would come back with the good news! I still feel a bit achy sometimes but it never stops me from doing anything and you probably can't get to 62 without a few aches and pains! I'm convinced that my PMR was triggered by stress so I now try to be as chilled-out as possible - not always easy!

    Best wishes, Granny Anne

  • Posted

    Hi Granny Anne

    So pleased to hear you are now off the steroids

    I unfortunately have had PMR twice and in the over 3 years in the middle I did feel back to normal completely Perhaps too much so !! I did lots of physical work in the summer moved 10 ton of stone !!!! and overdid it also that year I had lots of throat bugs so I would just say to you really look after yourself If I ever rid myself of this again I shall look after myself

    So congratulations and take care !

    Mrs G

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.