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Oh nooooo......not again !

Posted , 13 users are following.

rocketman42
rocketman42

I have been using the DSNS method to decrease from 11.5 to 11. I have gotten to 1 day old (11.5) to 5 days new (11) and was doing fine. I was starting with 1 old and 6 new when on the fourth day I started to feel terrible again. So on the fourth day I added .5 to bring the total for the day to 11.5 and obtained some relief. 

The million dollar question is what do I do now ? 

Stay on 11.5 for a few days and try to pick up at 1 old 6 new? Go back to 1 old and 5 new? Start over again from the beginning?

Desperate not to lose the gains I made so all suggestions are greatly appreciated.

Thank you !

 

0 likes, 54 replies

54 Replies

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  • Mrs_CJ
    Mrs_CJ rocketman42

    Posted

    Hi scotth42,

    I am at a lower dose than you - currently at 3 1/2 prednisone for PMR. I too sometimes have issues when I am on the last half of the DSNS.  By the way, I reduce by only 1/4 mg. 

    Sometimes I do what others have said....go back on the old dose for awhile and then try again. 

    Sometimes i I take the old dose for 3-5 days, then go back a few steps on the DSNS (so maybe go back to alternate days) and then try to continue the reduction plan. I’ve had good luck with this a couple times but not with my most recent reduction attempt.....that one I gave up reducing and will try again after awhile. 

    Just don’t mess around with reducing and end up with a flare!  It’s not worth it!

  • DebbieHurts
    DebbieHurts rocketman42

    Posted

    I am having the same problem, very early on my try to get down by Slow method.  I've been on 20m down to 19m just for three weeks and the last few days I've been miserable.  Should I go up .5 or start over or what?  It is so maddening for me.  I hope you find an answer soon.

    • EileenH
      EileenH DebbieHurts

      Posted

      Are they SURE it is "just" PMR? Difficulty reducing at that level can be a sign it isn't.

    • Michdonn
      Michdonn DebbieHurts

      Posted

      DebbieHurts, I know that everyone is different, but I had to be on 30 mg for about 6 weeks before I stabilized and started to taper. I used a modified DSNS, then stayed on my new dose for 2 weeks before starting to taper again. I also don't taper if I have any PMR pain, minor flare, increase my Pred, stabilize then continue. The process has worked for me. Good luck, think positive and try smiling. ??

    • Michdonn
      Michdonn EileenH

      Posted

      EileenH, had my appointment with my Rheumy yesterday, thought she might give me a hard time on tapering from 8 to 7.5 mg, but she didn't and didn't push for another drug. Pleasant Surprise! Think positive and smiling.??

    • Michdonn
      Michdonn EileenH

      Posted

      Oh EileenH, she did mention that a year ago I was in a wheelchair. Told her that I feel great and back riding my bicycle. What a difference a year makes. Thanks again for your help! ☺️
    • Michdonn
      Michdonn rocketman42

      Posted

      scotth42, hope so I have given her a lot of information, most of which comes from this forum. Last year when I was tapering from 8 it was taper directly to 7, then taper to 6 mg. Now okay taper 7.5 alternate your days. I tapering the DSNS method and have been. I am in no rush. Good luck on your journey. Try to think positive and smile. ☺️
    • DebbieHurts
      DebbieHurts Michdonn

      Posted

      I would love love to try 30mg for 6 weeks!  I am always feeling the pain flare, though it is barely barable at 20mg and she wants me to get down from there to 10.  I am going to take some of these comments for her to read.  She'll probably resent that.  She's a marvelous person, but very sure that it isn't PMR that I have.  Maybe she is right?  I have two more tests to take, one for endocrinlogy, the other for nerves in my lower legs.

    • DebbieHurts
      DebbieHurts EileenH

      Posted

      Eileen, yes, I'm the one with the dr who is trying to find some other reason for my misery.  I really appreciate her taking me on, since my regular dr seems too busy.  In my body's opinion, it tells me I have fibromyalgia, polymyalgia and super sensitivity to pain and they all gather together to hurt me.  But I don't know how to treat myself.  Really I know I should exercise and eat better, but too painful to get to it!

    • Michdonn
      Michdonn DebbieHurts

      Posted

      Well DebbieHurts, I was in real trouble, I could not walk, wheelchair, could not put my shirt on my wife had to help me then she would have to button it and I need to help me get off the toilet. No DebbieHurts, I would wish that on anyone, plus the side effects are terrible, but better than the PMR pain. But with the help of this forum and studying PMR. I learned to take control of my destiny on my PMR journey. Having the support of my wife and now two other doctors makes this possible. Staying positive and smiling. ☺️
    • Michdonn
      Michdonn DebbieHurts

      Posted

      Thanks DebbieHurts, I consider myself to be a very lucky guy. I will be 81 this year and worked at my passion since I was a teenager at two different ski areas this season and have been invited back to both areas for next season. At this age ones never knows how long one can continue, but feel like I still have some good years ahead of me. I try to stay positive and keep a smile on my face. ☺️
    • DebbieHurts
      DebbieHurts Michdonn

      Posted

      You are doing great.  I'm the opposite sort of.  I'm 64 with chronic depression.  I want to be positive and I'm good at smiling through the storms, but I often feel hopeless and can't "snap out of it."  Skiing is out of my reach.  I too cold by nature.  Tennis was my game as a younger woman, and just looking at people at play makes me nostalgic.

    • Michdonn
      Michdonn DebbieHurts

      Posted

      DebbieHurts, tennis is a goal, start walking all the time thinking when I get strong enough I be able to get back on the court. Learn to listen to your body, set a goal to go out and walk a distance, walk that distance for several times till you feel you can increase by a small margin. Do not over do it, but be consistent, and always be thinking positive, smile. Good luck it is not easy but a young lady like you can do it! ☺️
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