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I need to confirm how to handle a flare

Posted , 10 users are following.

amkoffee
amkoffee

Well my rheumatologist wanted me to get my prednisone dosage down faster than I was going which was a half of a milligram every two to three weeks. She was concerned that the prednisone was the reason for my broken ankle. When she asked me to do this I was on 15 mg and had never been successful to get lower than 11 mg. Last week Monday I started 9 mg and I was doing good and I was real happy about that until today. I am in a lot of pain and so I just took 2 mg extra prednisone today. I'm really hoping that this is just a flare and will be temporary and I can go back down to 9 mg in a couple of days. If I have been good for a week wouldn't it be logical to think it's a flare and not that my body can't handle 9 milligrams? And do you think Ann extra 2 mg a day will be enough?

0 likes, 14 replies

14 Replies

  • Michdonn
    Michdonn amkoffee

    Posted

    Amkoffee, do you split your dosage? The problem is everyone is different, I was at 8 tapering to 7 when I had my bad flare, ended up on 30 to get relief. On a couple of minor flares, I increased by 4 & 6 mg for few days, if feeling good when back to my DSNS taper level and have been okay. I never taper if I have any PMR pain, stay at that dosage or increase. Thinking positive with a smile. ??

    • amkoffee
      amkoffee Michdonn

      Posted

      I do not split my dose currently. I take it all early in the morning. I have split my dose in the past and I can't remember why I stopped doing that. But the 2 mg of Prednisone that I took this afternoon really did little to nothing for my pain. It's really hard sometimes for me to judge what my pain is from. I've had chronic pain in my lower back for 11 years and so when it hurts more then normal the only way I know it caused by PMR is that my pain medication does not work to help with the pain. And my hands and forearms which is another place I feel it, I have arthritis in both hands and once again I don't know for sure if it's from the arthritis or the PMR. But like my back I got no relief from my pain meds so again I have to assume that the pain is from my PMR. Maybe I should have taken more than 2 mg. So you usually go up 4 to 6 milligrams a day for a few days? I was afraid that 2mg might not be enough. So do you think I would get any relief if I were to take 2 or 4 more mg now many hours after I had taken the other 2 mg?

    • Michdonn
      Michdonn amkoffee

      Posted

      Amkoffee, I am a big baby after my flare, if were me, I would take the 4 and would do so for a few days, hopefully you will feel better. Then drop back to the high level of your taper. That is what I have done. I know that we are all different, but that is what has worked for me. Hope you feel better, think positive and smile. Smiling ☺️
  • DebbieHurts
    DebbieHurts amkoffee

    Posted

    I have done this, too, taking an extra bit of pred. when I am in too much Poly. pain that doesn't respond to pain pills.  I've been on 19 going down to 18 this past week and got so I was crying with pain.  I took a 5mg tablet and in a few hours felt almost normal for half a day, but I went back to 19 and I feel the old pain coming back.  I can't seem to reduce at all.

    • amkoffee
      amkoffee DebbieHurts

      Posted

      Don't feel too bad I haven't been able to reduce either much either. And I did end up crying last night. I just got to the end of my rope with the pain. I'm just surprised I was able to fall asleep and I'm glad for that. I hope things work out for you with your tapering.

    • Michdonn
      Michdonn DebbieHurts

      Posted

      DebbieHurts, are you using the DSNS method to reduce 1 mg?
  • Silver49
    Silver49 amkoffee

    Posted

    It is sometimes difficult to know with pain, when reducing. I am following the DSNS method and yesterday I was in a lot of pain but I had very early starts two days in a row and a lot of stress. I also found myself sitting too much due to circumstances outwith my control. Today I didn't have the early start and I have been busy, on my feet more and feel no pain. I find sitting too long not helpful but we are all different. I am reducing from 3mg to 2.5 at present. I hope your pain will be under control very soon. At the beginning of my journey I had to sit more and pace myself.

     

    • amkoffee
      amkoffee Silver49

      Posted

      Well I've been at this reducing since September 2016, and I've never successfully got below 11. This is why I was so excited when I got down to 9 mg and didn't experience any PMR pain. As far as the sitting goes I have a broken ankle and I'm not allowed to walk on it. (It's been 12 weeks) Therefore I am stuck in my bed or my scooter if I need to go somewhere. It has really done horrible things to my body I never would have expected. For example I've had some horrible back pain but eventually the pain subsided, well at least to its normal state. My hands started hurting and that's from holding my body weight up when I transfer from one place to another. (ie my bed to my scooter or my scooter to the toilet.)

    • Silver49
      Silver49 amkoffee

      Posted

      Your situation is different to mine, amkoffee. I appreciate that it is much more difficult to move around. It sounds very similar to the one of a friend Inwas with yesterday though she is now off Pred but has much more to contend with than I.
  • amkoffee
    amkoffee

    Posted

    I sent my rheumatologist an email about my problem and she wants me to come in today to check my inflammation marker. I know that I can still be suffering from PMR even with normal inflammation markers but it does seem a good place to start in any event.
  • Silver49
    Silver49 amkoffee

    Posted

    I'm sorry but for some reason the reply sent before I had finished. No wonder you were excited about reducing and now frustration. It must be so difficult not to let it get you down. I don't know what to advise re the flare as the pain from your ankle and back will be part of the whole picture and means you may need more Pred than you have already taken to settle the flare. Hopefully, you can increase it and then drop more quickly to where you are comfortable. Best wishes for an easing.

    • amkoffee
      amkoffee Silver49

      Posted

      Believe it or not there was only a day or two that my foot ever really hurt bad enough to bother me. And when I fell and not only broke my ankle but I sprained the other ankle as well. So for quite a while I had two boots on. But in the last few weeks I've been able to take my boot off my sprained ankle and it is all healed up. Now my back is a whole different story.

    • Silver49
      Silver49 amkoffee

      Posted

      I'm glad to read that the ankles do not give painful problems. I know a number of people who have back problems and it affects so much of their daily life. It must be so difficult for you and to have PMR on top plus the issues you are presently experiencing. I hope your Haematologist can solve the iron deficiency problem soon. 

  • EileenH
    EileenH amkoffee

    Posted

    if it is a flare - the most likely cause is that you have reduced to a dose below what YOU need to manage the inflammation. I don't know if 2mg will be enough - when you reduce too quickly then you lose the overview and when you flare you have no idea where you got to the dose being too low.

    More haste - less speed... And reducing post trauma is a fraught experience anyway.

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