1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

polymyalgia

Posted , 5 users are following.

sybil
sybil

[color=darkred:78d04c8bca][/color:78d04c8bca]

I'm from the USA and there are nosuch forums here. I have pmr and am now on 1.5 mg daily and take 0.5 mg at night so I won't wake up stiff. I have been on the dreaded prednisone for two years and want to get off it.

I have had to go down veryslowly , about 0.25 mg every 2 to 3 weeks. My body can feel 0.25 mg.

0 likes, 7 replies

7 Replies

  • buddy1
    buddy1

    Posted

    hello i am new to the forums . i have just been diognosed with pmr four weeks ago. i have just taken my first dose of prednisolone today and have mixed feelings about them. scary really when you read about the side effects but i cant wait to get some relief from all this pain that i have had for going on four years now. if you ever want to get in touch and email about your condition you are very welcome
  • rml313
    rml313

    Posted

    Iam from the usa also, diognosed with pmr 6\19 \12 . I take 10mg prednisone worked very weii with in 24 hours. I can not find a forum here i feel kind of alone, I dont know anyone else with pmr Iam 67 & male
  • carolk
    carolk

    Posted

    welcome to you all you will find lots of support on this and other forums so if you have any queries that we canhelp wth just post themon this site and you will find people will answer .buddy 1 you feelings about steroids are understandable but basically these are the only drugs that control not cure this condition ,there are side effects but you have to balance that with the pain relief you can get if you are on the right dose of steroids and reduce at a slow steady rate according to your symptoms ,so stick with us buddy rmi/313 and sybyl we will listen and help carolk
  • EileenH
    EileenH

    Posted

    To the USA friends - we're not biased, you are very welcome here! If you look at the pinned bit at the top of the PMR thread you should be able to find links to another UK forum where we have a load of other folks from your side of the pond. Not as serious and staid as here - we have a good laugh over there too. Might not be your cup of coffee (well, I can't say tea can i?) but give it a whirl!

    Buddy - pred is not the enemy. It is allowing you to have a life and with care you will not suffer too badly with the side-efects. If you read the side -effects lists of almost anything you would never take it. Aspirin is horrendous! And you can buy it OTC. Like paracetamol (sorry can't remember your names for them offhand) which kills you quite easily by finishing off your liver. Pred has 82 plus side-effects. Noone gets them all. Some get almost none. And guys are different (well, we knew that anyway) in their response to both pred and course of PMR.

    Eileen

  • sybil
    sybil

    Posted

    Update on sybil from 2007

    I have been taking 1.0 mg prednisone as maintenance for the last 2-3 years. My internist says that if I

    take it early in the am, the effects on my body are not too bad as your own body produces a steroid surge early in am. I have tried to get down to 0.5 mg but never have really done it as feel very stiff.

    My suggestion is to do something to fend off stiffness. I gave up yoga but the last 2 years I have practised qi gong (like tai chi) only made for health and usually done by older people. This seems to help if one practices every day. There are probably other good activities too.

  • skybluepink
    skybluepink

    Posted

    When I visit the Inspire website Isn't that in USA ?
  • carolk
    carolk

    Posted

    not aware of this inspire website in uk carolk
Back to top

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.