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    An elementary question

    This is a question that I thought I had a solid understanding of but there is still a grey area of doubt.

    This is regarding the use of steroids in a flair. What I had distilled from all the information out there was that steroids reduce the inflammation that occurs during a flair and can help you fell better faster. But do not have any affect on the degree of long term damage.

    My experience when I was first diagnosed was that the steroids completely reversed the symptoms while I was on them but they returned shortly after I finished the course and took months to diminish. They always return when my body is under some kind of stress particularly hot weather.

    The question is, does getting IVSM have any use other than to help us feel better faster?

    #2
    My understanding is the same. It may help you end a flare quicker, but doesn't change the long term possibility of residual symptoms.

    When you have symptoms that come and go with heat or fatigue, I believe they are referred to as paroxysmal.

    The only other use I know is a pulse treatment. I don't think as common as before, but when I struggled with fatigue, we tried a one day pulse each month. It only helped a week.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      This is a good question. All I know is that steroids are not supposed to be safe to use long-term Yes, or no?
      Marti




      The only cure for insomnia is to get more sleep.

      Comment


        #4
        Originally posted by marti View Post
        This is a good question. All I know is that steroids are not supposed to be safe to use long-term Yes, or no?
        Correct. Not a long term med. It can affect the heart and other organs.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Originally posted by palmtree View Post
          ... They always return when my body is under some kind of stress particularly hot weather.
          If your symptoms last less than 24 hours, it might be a pseudo exacerbation. Symptoms are real; but it's not a real flare. Symptoms can be caused by hot weather, etc and disappear when the trigger is removed.

          https://multiplesclerosisnewstoday.c...ns-difference/

          Originally posted by palmtree View Post
          The question is, does getting IVSM have any use other than to help us feel better faster?
          Usually that's the only benefit.

          For me, without steroids, my symptoms got continually worse.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #6
            Originally posted by Mamabug View Post
            If your symptoms last less than 24 hours, it might be a pseudo exacerbation. Symptoms are real; but it's not a real flare. Symptoms can be caused by hot weather, etc and disappear when the trigger is removed.

            https://multiplesclerosisnewstoday.c...ns-difference/


            Usually that's the only benefit.

            For me, without steroids, my symptoms got continually worse.
            If the symptoms got continually worse that sounds like a good argument for taking steroids.

            Comment


              #7
              Originally posted by palmtree View Post
              If the symptoms got continually worse that sounds like a good argument for taking steroids.
              Yeah; unfortunately, I felt like I had no choice.

              But, I was always concerned about frequent use of steroids, which is also not good. Other effects include high blood sugar / risk of diabetes, and increased risk for osteoporosis. It also can cease to become effective, as the body builds up a tolerance.

              Thankfully, after I switched DMD's many years ago, my fx and severity of flares decreased significantly. I haven't had a serious flare since 2010, and no flares at all since 2014. I used to have one or two serious flares each year.

              Although I still used steroids in 2014, I started at a dose of 80mg, as opposed to 1000mg.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                Dear Palmtree,

                Your understanding on the use of steroids for MS flare-ups is quite good. Steroids are given to shorten an exacerbation and get a pwMS back on track sooner than they would have recovered on their own.

                Your question was do they do anything beside make you feel better. The answer is, yes. Steroids reduce inflammation and help maintain the blood brain barrier. An exacerbation is a huge inflammatory problem in the CNS and steroids directly decrease inflammation.

                Long term, steroids do not seem to make a difference in disease progression. But short term they help tremendously in alleviating CNS inflammation and the suffering caused by it.

                The reason you feel better on steroids is because they tamp down inflammation.

                Best wishes!

                Comment


                  #9
                  I too got a lot of energy from 3 day infusions once a month...

                  I was trying to get energy to keep working and took IVSM for about 4 years. They would leave the needle in and wrap up my arm and I would work and then go for infusion.

                  Eventually it stopped being helpful but I loved it when it did. The
                  "Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

                  Currently on rituxan

                  Comment

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