Rhummi

Posted , 12 users are following.

hi all sorry to bother you all on the same subject 're reducing pred

I have just come back from seeing my rheumatologist and again like every time I go see her is not happy because I cannot get below 6mg of pred saying 2 years is long enough to be on pred I should be off them so I've had a blood test and like them all come back with a lot of inflammation so now she don't think it polymialger because I'm on pred I shouldn't have inflammation I told her that's because my body not happy you making reduce when I'm not ready could you advise me please

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  • Posted

    You might want to switch doctors. 2 years is not long enough, I was on 7.5 mg after 2 years. I've had PMR 3 years and 3 months and I've finally reduced to 4 mg but have some stiffness. If inflammation shows in your blood work it's because you are not taking enough Pred to reduce the inflammation. I just don't understand doctors. They cause us so much unnecessary stress. Good luck.

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    • Posted

      thank you for your reply i tried telling her this that some ladies.on this group have had pm r for a few years and they have told me if you have inflammation bout not taking enough pred to stop inflammation and to go back to the does where you didn't have inflammation she not listening grrr

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  • Posted

    I was given some good advice, listen to your body, mine wants be off at 1mg a month at the moment i am on 9mg after four years on pred, i am doing dsns method it works for, other people who know more will belong i am sure to help you. good luck

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  • Posted

    Sorry you have such a rheumy. I would also suggest changing to someone else who is more understanding. Hate to say it but I've heard so many c/o about rheumys and how stingy they are on pred doses. I saw the same thing with my sister. YOU are the one who is suffering and know how you feel. Change!

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  • Posted

    thank you for replying

    I just don't understand them.what do they get by trying to get you off predictions before your body is ready she also mentioned going on to methotrexate I don't know much about it.but I was reading an article in the hospital it says it for rheumatoid arthritis they tried to tell me I had that and not pm r blood test confirmed I didn't have it

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    • Posted

      The doctor should realize that is you do feel better on pred, and your labs are up, that you no doubt have PMR and should help you feel better instead of going into a lot of other dx and prescribing other meds. It seems they want to make it more complicated. Look for a more reasonable docter, don't wait too long!

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    • Posted

      I agree with Elijo and I also refused to go on Methotraxate at my last appointment. 6 mg is fairly low, they just have to give you time for your body to heal. I didn't see the point of adding another dx that can cause more harm.

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  • Posted

    You aren't on a high enough dose to manage your PMR at the moment - the blood markers only remain low as long as the pred dose is high enough. It is always the case that if you take too low a dose of pred, the inflammation will build up again. If any dose of pred did it we wouldn't be started at higher doses and then titrated/tapered down to find the right lower dose.

    Recent work has found the median duration of pred management is 5.9 years - the 2 year story is old hat and she needs to get up to date. These are links to articles about the work, the link to the study for HER benefit is at the end of the article:

    https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    http://rheumnow.com/video/dr-kathryn-dao-steroid-duration-requirements?utm_content=buffercb736&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

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  • Posted

    thank you very much once again I told her that there is people that have had pmr for ten years she insisted that two years is a long time it's normally gone by two years I told her by making me reduce pred too I soon are putting me in a flare they do my head in next time I go see any of them regarding pmr I'll show her these emails

     .Thank you all 
    
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    • Posted

      2 years is a long time? I know someone who has had it for 15 years. Is she for real? Why would you want to constantly fight with her? You don't need the stress and it will make your pain even worse, so get another doctor. Good luck and keep us posted.

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  • Posted

    Why Doctors say its 2 years its so wrong, I am in my 10th year and its taken me ages to get from 5mg down to 4mg. Its even more annoying when someone says to me " oh why have you still got it it only lasts 2 years" Hope you find a new Doctor.

    mary x

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    • Posted

      thank you macaso2 for your reply I keep on trying to get to 51/2 mg a month but i can't do it as it feels like I've gone then rounds with Mike Tyson lol why do they say two years you should be off them now when I said to her there are some people in this group are still on pred for ten years I just don't know all I do know is they blag my head

      Thank you all so very much

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    • Posted

      An early study claimed most people were off pred in 18-24 months. Heaven knows how they did it because more recent work I quoted further up found that only about a third get off in up to 2 years and many require a low dose of pred for up to 10 years. Which really isn't quite the same!

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