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Embril fail....moving to infusions

Posted , 9 users are following.

halw
halw

here the short of it.  I'm 57, diagnosed almost one year ago.  On methotrexate, hydroxychloroquine, folic acid, calcium, prednisone (tried to taper but cannt get below 15mg a day) and have been on Embril since July, 5 months.  Still out of control;; couple good weeks, then slammed.  Also taking sulindac (NSAIDs). I feel like I'm always on the border of a flair, and with the help of a sinus infection, I was wiped out for 6 days.  Now the ra dr thinks I should keep with Embril for 4 more weeks and the jump ship to an infusion.   

Not exited about this being hooked up to a bag thing and trying out another biologic.  

Im thinking I need a support group or something.  I'm getting very discouraged.  Any words of wisdom on this would help.  Thanks

1 like, 18 replies

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  • Guest
    Guest halw

    Posted

    I'm in the dark here, I thought when one medicine didn't work, they discontinued it and tried another. So far I have taken plaqineil and now I am on methotrexate & folic acid. I take predisone when I have flares but not everyday. What i am wondering is why can't you just stop taking the predisone? What does it do to you and what happens when you stop cold turkey? 
    • Rowbirdie
      Rowbirdie Guest

      Posted

      I think it s recent research that suggests giving combination therapy, 2 or 3 DMARDS for newly diagnosed RA - (early diagnosis and aggressive treatment. )That means those of us with severe symptoms can also have a biologic added after about 6 months .When they find what works , then doses are reduced or meds withdrawn I believe. I haven't got there yet!

      also with the pred. If it's less than certain number of days then no taper needed but if you take it for a length of time you have to taper so the adrenal gland has a chance to kick in again.

      Basically as I understand it, it's all about finding what works. If something works stick with it. If it doesn't they ' up' the dose or add another med.

    • halw
      halw Rowbirdie

      Posted

      Yup Row, I think you are right with what I understand has been my dr's direction.  Start with Methotrex and pred to get it out of acute flair, then add drugs until one starts working well and then taper off the pred first.  I think that's the plan I was hoping to be on after I started Embril.  Now, for me, it is not giving the relief or preventing the flairs, a second DMards and a new biologic is the way forward....in otherwords, keep trying til something works so I can taper pred, which I've been on for 10 months.  

      Thanks to everyone on this post who has responded.  I feel like you all know what I'm talking about and experiencing.  Thanks. 

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