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Is there anything that helps during pred taper?

Posted , 4 users are following.

karen0310
karen0310

It appears that I am very sensitive to the withdrawal effects when decreasing the dose of Prednisone. After a couple trial-&-error attempts, I found a schedule in another thread that has been extremely helpful. It's taken many, many weeks to get from 20 to 17.5mg.

Then I got pneumonia, for the 3rd time in 6 months, and the pulmonologist put me on a rapid 40-30-20 taper. I was nervous, but she promised the withdrawal effects aren't bad at high doses. The 40 to 30 drop was OK. The 30 to 20 drop is a crisis. I feel like I'm made of lead, hurting all over (joints and muscles--and I rarely have muscle pain with my RA), can't eat. I am pretty sure this is due to the prednisone, and not a flare, because the symptoms are a little bit different, and this happened before when I tried to decrease the dose too fast.

Is there anything I can do now to relieve these symptoms? Pain meds aren't helping. I've greatly increased water intake, thinking I can flush it out. I'm running out of sick days at work! But there's no way I can lie around like a slug there and people not notice.

0 likes, 8 replies

8 Replies

  • Rowbirdie
    Rowbirdie karen0310

    Posted

    Hi Karen

    Just wondering if your RA is well controlled with other meds? I was out on orednisolone tablets 18 months ago to help while waiting for RA meds to work but they began on 20mg . Then reduced by 5 mg weekly- got stuck on 10mg for a long while, then on 7 and half for 6 months. Now a biologic is working I am on a slow taper of 1mg every 2 months and currently on 2 mg. my rheumy said the aches it produces on reduction are the body adjusting to making own corticosteroid again, not resurgence of RA. It is hard to get off but I msurprised you are on such high doses. But I think slow tapering is the only answer, sorry to say.

    • karen0310
      karen0310 Rowbirdie

      Posted

      It's really not well-controlled. It's like I'm stuck in a mild flare 90% of the time, with an occasional very bad flare. During a bad one over the summer, my rheumatologist upped the prednisone to 20mg. I was on MTX, plaquenil, and trying Humira at the time. Pred was meant to be temporary bridge. Then in October I got pneumonia, and they took me off everything but the pred. There's something growing in one lung, but tests & scans & cultures all inconclusive; don't know what it is. I was allowed to start Cimzia in December anyway, then immediately got pneumonia again.

      My rheumatologist wanted me to decrease pred to 15mg while beginning Cimzia. She insisted dropping 20 to 15 would be fine. It wasn't. It was exactly like this. So I had to go back up to 20, then drop a fraction mg at a time. Between the pneumonias & the withdrawal symptoms, I feel so rotten. I want to be positive & have a good outlook, but I can't tell if the Cimzia is helping, or not.

  • barbara58180
    barbara58180 karen0310

    Posted

    Not everyone can go that fast. I can't either. If I am on 40 for pheumonia, than I have to go to 35, 30 25, ect. at least 5 days at a time.

    However, I can't even take it at all anymore,.

    don't let anyone push you do go faster than YOUR BODY can do it! It is, after all, your body, and you know it better thank anyone, even a doctor.!!

    Good Luck!

    • karen0310
      karen0310 barbara58180

      Posted

      Thanks! Next time I'll know to say no. Wheezing & shortness of breath are preferable to this lead feeling!
    • barbara58180
      barbara58180 karen0310

      Posted

      Karen,

      One more thought. I kept getting pheumonia/ or bronchitis while on Orencia. And finally stopped it. It ust weakend my immune system too much. It's possible that boith the prednisone AND the CIMZA are doing that. Did you know that pednisone lowers immune systym , too?

      So, both COULD be contributiong to your getting pneumonia. . I don;t really know. . BUt in my case, I had to stop Orencia, which worked really well for me, but I was sick too often.

      Good luck!

      Also, if you've been on a high dose for a while, your adrenal glands just might not kick in that fast.

  • barbara58180
    barbara58180 karen0310

    Posted

    Do you experience any depression as a side effect of the prednisone taper, or after?
    • karen0310
      karen0310 barbara58180

      Posted

      I've been treated for depression for years before being diagnosed with RA. I am aware that can be one of the withdrawal effects, but I don't think I have any more depression than usual. :0)

      I have an appointment with Rheumatologist in 2 weeks. She said if the Cimzia doesn't work, we will try infusions next, but I can't remember of which drug.

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