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    #1

    Relapse & Steroids

    Does anyone opt to not take steroids when having a relapse? I was diagnosed June 2010 and have had 2 major relapses and many minor new symptoms.

    Long story short after trying two CRABS and bad side effects neuro put me on Gilenya. Now he told me that if I had another relapse he would not want to put me on the same IV steroids as you should not be on Gilenya and the IV steroids.

    So would I just not take any steroids then? I dont know why I didnt ask this when I started Gilenya? Lucky for me I havent had a need for any treatment but I was just milling this over in my head.

    CrazyCatLady
    MS Does Not Define Me.....My Love of Tea Does! LOL!
    Tags: None
    #2
    never taken em

    Hi
    I've never taken steroids for a relapse. Mostly due to personal preference. My dr told me that I should as they may shorten the time a lapse would last but I was not happy when I read the possible side effects of the steroids. The possible side effects of the rebif are bad enough for me.

    I always get annoyed when the dr says: the first step is you go on IV steroids for 4 days. He seems unwilling to tell me what the second step would be! (if there is any second step.)

    I've had 2 major lapses in the past year but I still don't take them.

    Comment

      #3
      After my last relapse (when I got my official dx) I was put on a series of 4 steriod IVs and then 1 a month for 4 months. Tomorrow is my last one!! I think that the side effects outweigh any benefit I have received from this and have considered turning them down in the future. I have already refused the steroid pill.
      I read that taking steriods with Gilenya can severely weaken your immune system. I wouldn't do it.
      Jessi
      Diagnosed 11/16/2010

      Comment

        #4
        I used to take steroids for most relapses, but now I don't. i had a rare side effect that caused a heart attack, so now they're a no-no.

        I took them once after that where I had to be hospitalized for the duration of treatment. I had the drip over most of the day instead of an hour or two with the nurse almost attached to my hip.

        In my opinion, they weren't worth it even when they went smoothly. I never saw enough benefit to justify taking them.

        As to why your dr doesn't want you taking them while on Gilenya, my guess would be that both Gilenya and steroids are immunosuppressants. They've learned their lesson from Tysabri. The risk of PML with Tysabri seems to be higher for those that had previously been on an immunoseppressant like Novantrone or took an immunosuppressant/modulator with Tysabri.

        I don't know what the official stance is on Gilenya and steroids, but with Tysabri you must have a dr sign off on getting your next infusion of Tysabri. Sometimes, you're made to wait before having the next infusion and some drs just won't give the steroids in the first place.

        It's possible the dr is being cautious and not allowing steroids to avoid any complications that could arise from a suppressed immune system.

        This is a good question. I'm curious now....have to see if I can find the official Gilenya stance on steroids.

        Comment

          #5
          I have had 3 flare ups in the last year. many prior to that. I have taken IV steroids for all. I wouldn't change and if needed again i would do it again. the first 2 were only 3 days, the last one had to do 5 days. when i have a flare up, my speech is very bad and i cannot walk. with a couple of days of steroid use, my speech get better, walking usually takes a week or 2 to get fully recuperated. i do get very hungry, stay you way to late, eyes see weird things and i get very wired. my side effects are minimal to what happens during my flareups.

          Comment

            #6
            CrazyCatLady,

            I have only used steroids for my first 2 exacerbations the last 3 I waited out. I prefer not to take steroids.

            1523371682@facebook,

            The more steroids are used the less effective they become. There are also long term side effects to using steroids...just be informed about the risks, you have a lifetime with the disease.
            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

            Comment

              #7
              I have never taken steroids for flare ups. None of my Neuros have ever offered them to me, not sure why?

              Is it standard practice to take steroids for flare ups?
              Opiegirl, Dx 1991
              Have never used DMD's.
              LDN 9/2011-9/2012 & just started again 6/14
              Estriol 9/12-present
              Still Hopeful.

              Comment

                #8
                Originally posted by opiegirl View Post
                I have never taken steroids for flare ups. None of my Neuros have ever offered them to me, not sure why?

                Is it standard practice to take steroids for flare ups?
                Yes and no. Most doctors will at least consider them, but there are good reasons to think long and hard about taking them.

                The intention of the steroids is to reduce the inflammation in the CNS,possibly shortening the duration of the relapse. It may help reduce symptoms, but doesn't act directly on them or do anything for disease progression. Any relief from symptoms a person feels it's only because they have sped through the relapse. The ultimate outcome of the relapse would be the same regardless of steroid use.

                Considering the potentially serious consequence of both short and long term use of steroids, especially at the massive dose taken for a relapse, some doctors either limit steroid use to severe relapses that effect mobility or function or won't prescribe them at all.

                As you can see from the posts here, some PwMS feel the same way.

                Comment

                  #9
                  Originally posted by MrsBones View Post
                  Yes and no. Most doctors will at least consider them, but there are good reasons to think long and hard about taking them.

                  The intention of the steroids is to reduce the inflammation in the CNS,possibly shortening the duration of the relapse. It may help reduce symptoms, but doesn't act directly on them or do anything for disease progression. Any relief from symptoms a person feels it's only because they have sped through the relapse. The ultimate outcome of the relapse would be the same regardless of steroid use.

                  Considering the potentially serious consequence of both short and long term use of steroids, especially at the massive dose taken for a relapse, some doctors either limit steroid use to severe relapses that effect mobility or function or won't prescribe them at all.

                  As you can see from the posts here, some PwMS feel the same way.
                  This may sound studpid, but what does PwMS stand for. thanks.

                  Comment

                    #10
                    Originally posted by 1523371682@facebook View Post
                    This may sound studpid, but what does PwMS stand for. thanks.

                    Not stupid at all.Person or people with MS I'm weird about terms used to refer to me and others with MS and/or disabilities.

                    I also refuse to use "wheelchair bound". No one has tied me to my wheelchair.

                    Comment

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