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Another helpful web site

Posted , 5 users are following.

Wallis
Wallis

Hi all, poking around on the computer late at night and found a site which might be of help to people new to this pmr malarkey. Specially if you're awaiting diagnosis or your doctor is dithering.... Tills, Bob maybe?

Google 'yourtotalhealth' and it'll come up as the main site, go into the A-Z and find polymyalgia rheumatica. Click on that, then click again on fibromyalgia and pain disorders. Once you're at that page you click again on poly rheu.. (under the blue heading Health Guides) and you've got seven pages of what I thought was really helpful information. Including 'questions to ask your doctor' (but not [i:ded3007980]Why Me[/i:ded3007980]!!!)

Hey it's 1230am so it's now my birthday, and my pmr (if it is that) is definitely on the mend. Perhaps this is going to be a good year!

Best wishes, Wallis x

0 likes, 8 replies

8 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Oooooh, I hope I'm the first to say MANY HAPPY BIRTHDAY WISHES, Wallis, and here's hoping it's the year that your PMR takes a leap off the Planet. Thank you for what sounds like more interesting information (we can't get enough of it, can we?). I will look at it later......hope the website doesn't crash today with all of us GOOGLING it.

    Have a lovely birthday - hope you're doing something special....ENJOY!

    :P :P :P

  • Guest
    Guest

    Posted

    Happy Birthday Wallis. Hope it's a good one!

    Thank you so much for thinking of Bob and me. I will look at the website later.

    I think I am faring a little better than Bob who seems to have hit a brick wall with his doctor!

  • Green_Granny
    Green_Granny

    Posted

    Happy Birthday Wallis :D Thanks for letting us know about this site. Really useful about the things PMR could be mistaken for as well. Bit surprised that in the States NSAIDS are stll used with Pred!! It made me appreciate our NHS, despite our complaints about different doctors - think how much it could cost us otherwise! I kept getting an annoying little pop up about stopping smoking but maybe I was doing something stupid with my new laptop so...

    Have a good day, green granny

  • Guest
    Guest

    Posted

    found your site after searching around, very interesting, and have put it on my favourites. cheers. m edwards.
  • odiecass
    odiecass

    Posted

    NSAIDS are NOT used with Preds in my part of the States. One of the first things my GP and Rhuemy told me was not to take any NSAIDS while on Prednisone. My GP prescribed Percosets for the pain in the morning. They are addictive but used sensibly they work for that early morning pain and allow me to get off to work in the morning. Boy its hard to get below 5mg even dropping to 4 1/2 is tough
  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Odiecass - Yes, as you say, it's \"tough\" trying to get below 5mgs. I am trying to follow Ragnar's regime but tapering even more slowly. Each reduction seems to take longer than the one previously, this time taking 7/8 weeks so far trying to taper from 3 to 2mgs. I am crossing everything that I will achieve the same successful end result as Ragnar.....being PMR/GCA and steroid-free! I wish you the same success.
  • Guest
    Guest

    Posted

    I'm finding getting down from 5mg quite difficult too. I tried the 5mg one day, 4.5 mg the next recommended dose and got quite sore, so went back up to 5mg daily. Then I tried 5mg daily, except Saturday when I took 4.5mg. Felt fine, so I'm now on 5mg, with 4.5mg on Saturdays and Wednesdays. I'm a bit sore at times, so will keep on this regime for the next few weeks.

    This site has been a lifeline for me. Thank you everybody.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello Andrea - this week, I'm doing 2 for 5 days and then 2.5 for one day and then hoping after 8 weeks of slowly tapering by about half a mg a week I will reach 2 permanently without any extra increase in the achiness (or the blood tests). I'm wondering if there's anyone else \"looking in\" at the moment who is struggling at this very low dose? Do hope you successfully get to 4 eventually.
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