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    Steroids

    Hi folks,

    I just finished my 3rd steroid infusion ever. that's three in the last 3 years. I guess one a year is not that bad. This time things are different. The last two times I started getting better right away and just kept getting better until I levelled off (which wasn't all the way back to normal but was better than before the steroids).

    This time I felt my balance come back after two infusions but since my 3rd infusion (this past friday, March 23) things have gotten worse...My symptoms are worse than before the treatment...especially that "hug". I am concerned but hopeful that maybe this is normal and things will calm down again in a day or two.

    Has anyone else had this kind of experience. i don't want to panic but this time is so much different than the last two times that I am starting to feel overwhelmed!

    #2
    I'm going through about the same thing, except I'm 3rd time taking oral steriods. I'm so ready to feel better!

    Sara

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      #3
      Hi nabean:

      I think that folks who have had rapid recovery after high-dose steroids often come out of it with two beliefs:
      1) Their recovery after steroids will always be rapid, and
      2) It's the steroids that do the healing

      The first one isn't always true and the second one is never true.

      High-dose steroids can reduce inflammation fairly rapidly. So if someone starts steroids early in an episode when the effects are mostly inflammatory and there hasn't been significant demyelination, they can begin to see improvements as soon as the inflammation subsides.

      But once demyelination has occurred (which can happen if the inflammation is particularly "hot and fast" or if steroids aren't started for awhile), recovery might not be noticed for many days to weeks to months. And that's because of the second belief I mentioned above, which is false.

      Steroids don't heal anything on their own. They squelch inflammation, allowing a quiet environment in which healing can begin. Healing is a separate process that has to occur on its own. If significant damage to the myelin or nerves has already occurred, healing takes as long as it takes. And it can happen that steroids aren't able to suppress the inflammation enough to cut short an attack.

      I've had numerous episodes of optic neuritis and a couple of episodes of partial transverse myelitis, and I've had dozens of IV Solu-Medrol 3-days. I never begin to see any improvement before 3 weeks have passed, no matter how quickly I start the steroids. There have been only a few times when my symptoms got worse after steroids before they got better. Other people have different patterns, and every episode can be different even in the same person.

      From my own experience and from reading and hearing about other people's recovery, getting better "right away" isn't as common as recovery after a bit of time has passed.

      But my experience and other people's experience aren't as important to you as your own experience. If things have gotten worse for you after your third infusion, that merits a call to your neurologist. Only your neuro knows enough about you to advise you of what to do.

      So call your doc, okay? I hope you start feeling better soon.

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