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PMR, ACTEMRA, Pred Taper

Posted , 6 users are following.

kathy67492
kathy67492

I have had PMR FOR 3-1/2 years...tapering from 15m as low as 7-1/2m.

i had my second infusion of Actemra yesterday. Overall I would say things are better. Problem is, because I feel better, I have engaged in over-activity!

I have had three flares in the past month, BUT, have recovered overnight!

Normally it would take me 2 weeks to settle back down after a flare (reducing on the DSNS method 1/2m at a time). I am experiencing a lot of fatigue...still taking deep, hour-long naps. After the first infusion I reduced 1 whole milligram, from 8 to 7!! I feel that I have kind of muddled thru, but am moving forward. After two more weeks, if I feel ready, I will drop to 6m!! Don't even want to think about that!! The infusion itself is a non-event...takes a little over an hour...not at all uncomfortable. The good days are better...I need to control the activity level. Activity-wise I am talking about tennis, golf, grandkids, errands, etc.....really one big activity per day...rest periods are essential.

trying to void the in-line chatter about the drug... lots of bad side effects!

we will see. I did feel that a bump back up to my "comfort dose" of 8m would make the days better...but the whole point of this treatment is to taper the prednisone.

1 like, 9 replies

9 Replies

  • amkoffee
    amkoffee kathy67492

    Posted

    You can go up several mg for a few days and then drop back down to your original dosage without having to taper. So if you think it's just going to

  • amkoffee
    amkoffee kathy67492

    Posted

    Oops pressed the button by mistake.

    So if you think it's just going to be a quick flare then you can just drop back down at the end of your flare as long as it hasn't been more then a few days.

  • celia14153
    celia14153 kathy67492

    Posted

    I think we all muddle through because our responses are completely individual and can vary from day to day. I also understand why you don't want to read about side effects - they may be catching! However, these too vary and some of the hints, (yoghurt in the morning when you take the tablets to help your digestion), can be helpful. It sounds as if you're doing really well, coming to the last lap, raring to go and get the whole thing over with. Just keep the naps, adjust the dosage, enjoy the grandchildren...😀

    • kathy67492
      kathy67492 celia14153

      Posted

      This treatment is offering me "something else to try"...I have been reluctant to add any other med to the prednisone. I am hoping that the zapping of the il6 in my system will help wake up my adrenals...?...not sure how all that works. The medical profession sure does hate the prednisone!!

  • EileenH
    EileenH kathy67492

    Posted

    "the whole point of this treatment is to taper the prednisone."

    It is - but it can only happen as quickly as your adrenal gland function wakes up. If it is sluggish - your reduction has to be slower. After over 3 years - it is likely to take longer than someone who only started on pred a few months ago.

    • kathy67492
      kathy67492 EileenH

      Posted

      My rheumatoid will do blood work again in 4 weeks. Did SED rate a week ago, it was 5 (originally 87, 3 years ago). I know that doesn't tell the whole story. My white blood cell count is elevated still...and my triglycerides are elevated. Also, my blood pressure was up a little from normal (probably the stress of the infusion!). I wonder when they could do the adrenal function test..?..when I am completely off the prednisone maybe.

      cannot imagine that! Wishing you a good weekend...lots of rest!..that's the secret😊

    • EileenH
      EileenH kathy67492

      Posted

      No, if you are on pred it can still be done but the results are interpreted differently. There is no point until you are at about 5mg or less. And leaving it until you are off pred is a bit late if you do have poor adrenal function - but you would know. Increasing fatigue as you reduce the pred is a very likely sign.
    • kathy67492
      kathy67492 EileenH

      Posted

      Thanks...good to know. Allegedly I should be on 5m some time in the next few months!?! Ha!
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