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Surprised by pain

Posted , 10 users are following.

barbara75814
barbara75814

Hi, I've been on the very slow reduction method and recently got to where I was reducing from 2 to 1 mg. and then, 1 mg. to zero. 

Surprise, surprise! I've been waking up to severe burning/aching in upper arms the legs. Now it goes away after getting up and drinking some coffee while reading the paper, but every morning starts out the same painful way.

My Q: I can tolerate the pain even though I dislike it. Can I presume once I'm finished with the pred entirely, that nature will allow me to have no pain beyond how it is in the mornings? If so, I can spend the rest of my life (I'm 85) with that pain--just so it doesn't get WORSE.

THANK YOU FOR YOUR THOUGHTS--Barbara Y.

0 likes, 11 replies

11 Replies

  • iellen32
    iellen32 barbara75814

    Posted

    I do not have a massive knowledge on this matter, neither close to that however I may say the inflammation keeps existing behind....

  • Judygirl
    Judygirl barbara75814

    Posted

    I also have been on a very slow reduction, now down to 4mgs,

    went down to 3 and then back up to 4 for the past 6 month.  As

    long as I am without discomfort I can see no reason not to stay

    at 4mgs, I'm 87 so better to feel good than worry about getting

    off prednisone altogether.  Looking at other medications is a bit

    silly really as long as we have one than works, just treat it gently.

    Hope this helps, our make-up is so different it's hard to generalize.

    • iellen32
      iellen32 Judygirl

      Posted

      Yes, you are right!

      if you feel good why not!

      We are our best judge, we know our symptoms and they are our Control Panel!

      Enjoy yourself, enjoy yours 87 with such good dispisition and positive attitude!

      I congratulate you!!

      🌸

    • faye______00403
      faye______00403 Judygirl

      Posted

      I'm with you....I just turned 79 and really expect to be

      on some dose of pred for the rest of my life.  I think

      anything below l0mg is considered low and wouldn't give

      staying on that a minutes thought as long as my pain

      was under control.....

  • mike42494
    mike42494 barbara75814

    Posted

    I was on 20mg of Prednisone from Jan 1st-Feb 29th. I did taper down the last few weeks until I was off completely. Within a few days my burning pain returned full time. March 25th I started back on 20mg again, now 3 days later 50% of my pain is gone.
    • iellen32
      iellen32 mike42494

      Posted

      This is the way it goes - carefully tapering the Pred.

      Actually I am on Pred 20. Because a flare up I have been going from 9mg to this point of 20 - where I feel comfortable regarding my vision OMG!

      From here I will not rush going down too soon- lesson learned!

    • mike42494
      mike42494 iellen32

      Posted

      I am a chronic pain patient from a back injuty in 2004. For 12 years I have been taking varios medications for pain control including Morphine, Methadone and now take 5 others for the past 5 years that don't help my pain but have caused stage 4 kidney disease. Prednisone is the only med that really stops my pain. 20 mg seems to control my pain. I know there are bad side effects but my other drugs have caused damage to my organs and didn't stop any pain.
  • Anhaga
    Anhaga barbara75814

    Posted

    Is it possible that this is your adrenal/thyroid system having a few settling down issues?  I've heard it can take up to a year post-pred for the hormones to be properly balanced again.  If, on the other hand, you were feeling a return of pain throughout the day I'd be more inclined to say that there's still some PMR residue.  I've also heard that some people need to have a tiny pred dose for the rest of their lives - my doctor said as much when I started, saying that some people just keep a supply of 1 mg tablets which they use when they need to.  Hopefully it's more like the glands being a bit recalcitrant and they'll soon get their act together.
    • iellen32
      iellen32 Anhaga

      Posted

      Exactly!

      That's what I have been reading and hearing straight from people I know.

      The fact is : to avoid missing the point regarding each one of us our personal health/ nature / condition/reality.

      It is a 'cocktail ' well mixed of factors...😊

  • maid_mariane
    maid_mariane barbara75814

    Posted

    I'm by far no expert but what about .5mg daily how would you feel.

    My hat goes off to you getting to 1mg and feeling good. I would be happy just beling there. From what i have read this is not doing damage to you only controlling your pain. I don't see that as bad.

    Best of luck and i look at quality of life.

  • EileenH
    EileenH barbara75814

    Posted

    It's a very common phenomenon. 

    The problem you face is that there is a very small amount of inflammation there and you cannot be sure that it won't mount up - like a bucket under a dripping tap will eventually fill up. If 1mg a day prevents that - why worry about taking it? It is such a low dose it isn't going to cause any problems, however long you take it. If you are lucky enough for 1/2mg a day to stop it happening I'd take it and agree to differ with any doctor who tries to tell you it can't be doing anything!

    I doubt it is due to your adrenals not working well - you'd have felt it far sooner than this and it would have been fatigue you noticed I think, not the bicep pain. But it could be - I won't say it definitely isn't.

    But for you and Judy - in your mid-80s and almost off pred? I'd accept that gratefully! Why play with fire?

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