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Symptoms Keep Overcoming Steroids

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    #1

    Symptoms Keep Overcoming Steroids

    Background-- I'm undiagnosed of anything, though my neurologist has declared that I have some sort of "myelitis": something is amiss in my spinal cord.

    Anyway, we've been trying oral steroids, in doses that are comparatively very low to what people would get for an MS relapse. I did a Medrol Dosepak, and felt better about midway through, then the symptoms returned.

    Now, we're trying a burst of oral prednisone. 60mg for 3 days, then 40mg for 3 days, then 20mg for 2 days. I am on the third day of 60mg. Yesterday, it seemed as if a miracle had occurred: for the first time in months, I was wholly without symptoms (for me, paresthesias and pain in all extremities). However, by 8pm or so yesterday, the tingling and pain was creeping back. Today, I took the 60mg dose with breakfast, and it seems to have had no effect: the symptoms are still creeping back, as if I had not taken a dose at all.

    My question is: has anyone else had experience with symptoms that at first responded to, but then became refractory to, steroids? I just don't understand how they could work one day, and then not work the next, when my dose is the same. It's very frustrating.

    Thanks!
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    #2
    Hello derrie,

    Steroids are not a cure all for symptoms. Steroids reduce inflammation and will possibly shorten an exacerbation, they do not change the outcome of MS.

    Steroids should not be used for symptom management. There are medications that can help with the symptoms you are having.

    There are Neurologists that will not prescribe steroids for the symptoms you are having as steroids many times will not help or the symptoms return shortly after steroids are finished.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      In an MS relapse, steroids are used to reduce the inflammation in the CNS. With myelitis, it's the same thing, an attempt to reduce the inflammation causing damage to the spinal cord. This may or may not translate to symptom relief. The relief from symptoms comes from the body being able to do whatever healing it can.

      Steroids reducing the inflammation just allows the body to begin that process a bit faster than it would if the relapse is left untreated.

      They aren't used to directly treat symptoms like an aspirin for a headache. They're more like the antibiotic used to treat the sinus infection causing the headache. And like the antibiotics fighting the infection, there can be some ebb and flow of symptoms as the steroids fight the inflammation. Sometimes, a larger dose or second round is needed and sometimes , no matter what the dose or how many rounds you do, the symptoms stick.

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        #4
        Originally posted by MrsBones View Post
        They aren't used to directly treat symptoms like an aspirin for a headache. They're more like the antibiotic used to treat the sinus infection causing the headache. And like the antibiotics fighting the infection, there can be some ebb and flow of symptoms as the steroids fight the inflammation.

        Sometimes, a larger dose or second round is needed and sometimes , no matter what the dose or how many rounds you do, the symptoms stick.
        What a great explination!
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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          #5
          Ah, got it! Thank you both for the informative responses. I was making a false correlation between steroids and symptoms-- assuming that the steroids were working directly on my symptoms, and thus, I was getting upset that the relief wasn't sticking.

          And Snoopy-- right now, my neurologist is using steroids empirically (something he says he doesn't like to do, but he's at a loss over what is causing my spinal cord problems), to see how they affect me. He says it might give him insight into what is happening with my body (which it already has-- we know I've probably got inflammation going on because of my initial positive response to steroids). I know I can't use them long-term for symptom management, but I was foolishly optimistic after a few days of feeling good that I would at least continue to be free of my symptoms while I was on the steroids.

          Again, thanks y'all for helping me understand how this drug works. Much appreciated!

          Comment

            #6
            Originally posted by SNOOPY View Post
            What a great explination!
            Thanks you!

            Derrie, you're welcome... hope you get some relief and some answers soon .

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