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Need an opinion please

Posted , 9 users are following.

amkoffee
amkoffee

I just started tapering down from 15 mg. (I had to start over in May). So I doing real well and I'm tapering by half a milligram every two weeks so last Sunday I got down to 13.5 mg. On Monday I had a tongue biopsy done which has been very painful and because they're testing it for cancer I am obviously on the edge of my seat waiting for the results. (So I'm stressed out) Yesterday I noticed that my hands were hurting. That is typically where my PMR seems to start when I am going into a flare. I know that the biopsy can cause my PMR to flare. My question to you is should I bump back up on my prednisone to 14 mg even 15 mg now or should I wait this out and see how I do. The hand pain I am experiencing is definitely something I can manage with. Right now my biggest concern is eating. The good news is that I've lost 10 pounds!

0 likes, 13 replies

13 Replies

  • kathy61958
    kathy61958 amkoffee

    Posted

    I am all about Doctor input...That disclaimer noted, I wasn't waiting 2 days for my doctor to give his opinion when I was sobbing hysterically. I bumped my own dose. A flare is a flare regardless of what caused it.  My current dose wasn't helping so I went to 25mg  which didn't help either.  30 mg was my magic bullet. I've been on 30 mg for 3 days now and am virtually pain free. After a week I will drop back to 25mg. If my symptoms return, I'll High tail it right back to 30mg. I have a very low pain threshold and I absolutely cannot live with it. I'm not tough, I don't pretend to be.🤷🏼???

    • Michdonn
      Michdonn kathy61958

      Posted

      kathy61958, when tapering from 8 to 7 mg, I flared and had get 30 mg before I got any relief, stay at 30 mg for almost 6 weeks. I did not to reduce while stuffing any PMR pain and wanting to get active again. I had end up in a wheelchair could not move my legs. It took time to get moving again, but I did both mentally and physically. Thinking positively and got that smile back on my face. 🙂

    • EileenH
      EileenH kathy61958

      Posted

      10% is the recommended maximum step-down when tapering and for some people even that is too much.  You cannot stay at 30mg for the entire time, the side effects at high doses are far greater and doctors get very edgy! 
  • jean39702
    jean39702 amkoffee

    Posted

    I checked your previous posts and I do sympathize with your current situation. Based on my own experience, you may have to answer this question yourself based on your experience.  Or you may have a trusted physician to consult.

    Personally, I cannot manage tapering more than .5 mg every month or two. After having a flare last April and increasing back to 15 mg from 10, I am now only tapering to 10.5.  During July I may have overdone things and some of my typical PMR pains may be on the returned. So, again I have to consider what's happening over the next few days and may have to increase again for a bit to get things stabilized again.

    I have absolutely no medical assistance to fall back on living in a small community with locum doctors and no specialists and have to rely on all I've learned after three years on the forums and through my own research and experience.

    Wishing you the best outcomes.

    • amkoffee
      amkoffee jean39702

      Posted

      Thank you for your response. I am very lucky that I have a great rheumatologist but as sweet and caring as she is, I still like to bounce things off of this group first. But I think you are right. Ultimately it's up to me to decide. And I think I'm going to stick with the 13.5 for a while unless the pain gets bad. Then I'll go back up.

    • amkoffee
      amkoffee jean39702

      Posted

      Just curious how do you look up people's prior posts?

    • nick67069
      nick67069 amkoffee

      Posted

      Click on person's name.. You will get their profile, what groups they belong to and recent activities. You can expand the activities to include more history

    • jean39702
      jean39702 amkoffee

      Posted

      If you want to see all discussions in the PMR/CGA discussion group, go to the top of the page and click on the underlined Polymyalgia Rheumatica and CGA discussion group. That should take you to a page which gives you access to all the discussions in the group. You can also start a new discussion from there.
  • nick67069
    nick67069 amkoffee

    Posted

    I have bumped my dose up 1-2mg to compensate for additional stress/physical effort. If it is not serious, it should be handled in a few days. You case is special, because stress will not go away until you get results. Anyhow, if the increase in dose is less then 1 week you can go right back to your initial dose without tapper, so my opinion is that you should increase the dose and make yourself comfortable for a time being.
  • celia14153
    celia14153 amkoffee

    Posted

    I completely understand why you don't want to lose ground but don't feel bad if you need to up the dose to tide you over this stressful time. You can drop back when you're ready and it's not a competition. Hoping very much that all goes well. 

  • kathy67492
    kathy67492 amkoffee

    Posted

    I think a tongue biopsy is a stressful situation...you don't need a flare. I would be,PT it up. Seems when I am managing the stress and activity in my life I can manage well and taper, but why push the envelope when you are having another medical issue.

    Hope you have good results on the biopsy...REST💕 Keep us posted😊

  • EileenH
    EileenH amkoffee

    Posted

    I'd go back - you don't have adrenal backup for stress and I think you are allowed to be stressed!

  • Michdonn
    Michdonn amkoffee

    Posted

    amkoffe, many different opinions here on the forum, I for one try to be PMR pain free. That is why I stayed at 30 mg for 6 weeks. I take supplements eat a healthy diet and walk each day, hoping that my bones are not being damaged. Everyone of us wants off Pred as soon as possible the question is how to get there or to the lowest dose possible. Good luck on your journey think positive and put a smile on your face. 🙂

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