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New Here But MS for 8 Years

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    #1

    New Here But MS for 8 Years

    Hello all,

    I have read the message boards for years and learned so much. I decided it was time for me to join in so I could communicate also.

    I live in Mississippi where the heat is intolerable in the summer. I have a wonderful husband and a 1 year old labradoodle.

    I have been on Rebif for about 5 years and stopped taking it about 3 weeks ago. Was tired of feeling so bad and do feel better after stopping it. I think Rebif made me depressed and I had so much pain the next morning it took forever to get out of the bed. Felt like I had been run over by a bus.

    My neuro appt. day after tomorrow and I will tell her I stopped the Rebif. I would rather go back on Copaxone than feel the way it made me feel.

    I hope she will let me try Gilenya but I'm a little afraid. Anybody have any suggestions for therapy for me?
    Marilyn
    Tags: None
    #2
    Welcome to MS World. I only lasted on Rebif for about 6 months. I do hope find something that helps you and does not make you feel so ill.

    Keep us posted!
    I may have MS but MS does not have me!

    Comment

      #3
      Hello ndm

      I have read the message boards for years and learned so much. I decided it was time for me to join in so I could communicate also.
      Welcome! Glad you're joining in!

      I have been on Rebif for about 5 years and stopped taking it about 3 weeks ago. Was tired of feeling so bad and do feel better after stopping it. I think Rebif made me depressed and I had so much pain the next morning it took forever to get out of the bed. Felt like I had been run over by a bus.
      If you continue to feel better by being off of the Rebif, then it was probably a good decision for you. Quality of life is so important.

      My neuro appt. day after tomorrow and I will tell her I stopped the Rebif. I would rather go back on Copaxone than feel the way it made me feel.
      Just wondering, what made you go off of the Copaxone?

      I hope she will let me try Gilenya but I'm a little afraid. Anybody have any suggestions for therapy for me?
      You will probably get alot more feedback in the Medications Forum.

      Good luck at your Neuro appointment, and let us know what she has to say.

      Take care,
      KoKo
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment

        #4
        Hello Koko,

        My neuro took me off Copaxone when she felt it was not helping. Said I was getting worse.

        I'll let ya'll know what she says Wed.
        Marilyn

        Comment

          #5
          Welcome!

          Glad you "took the plunge" and joined.

          If you begin Copaxone, remember that it can take 6 months for your body to get more used to the med.
          Don't be surprised if you have a flare or two during that time.
          But, please don't give up.

          I had two flares my first year.
          It's been over 10 years and I'm still doing well on the medication.
          The side effects get way better over time, so please keep that in mind, too.

          Injecting manually is less shocking to the body, so if you can, try to do that.
          And, have someone who is supportive there to cheer for you, encourage you and help if needed.

          Learn what an IPIR (Initial Post Injection Reaction) is and how to take care of that.

          The first time I was scared to death, but I'd been on the med for over a year and was doing great on it.
          I'm still taking it and know that injecting is definitely a learned art. Practice, practice, practice.

          Stay calm of you have an IPIR, act FAST and get a frozen, loose bag of veggies from the freezer and used it as an ice pack wherever you feel like you're on fire, breathe when you can and realize these reactions are very rare and not the end of treatment with Copaxone.

          I'd like to take Gilenya possibly one day.
          The side effects concern me as well as it being so new.

          Best wishes and again, welcome officially to the group!

          Comment

            #6
            Off All Injections

            Hello all,
            Think I disappeared after my Feb. appt. w/neuro. She put me back on Copaxone and after 5 months on it, I remember how it was the first time I was on it. Felt like I was getting worse; almost never feeling good. Been off of it for about a month now and my walking is better.
            Anybody else feel like they were better when they stopped Copaxone? Haven't told my neuro yet but last visit she told me there are new pills on the horizon. She didn't want me on Gilenya so I'm assuming there are newer ones?
            I am taking vitamins and exercising a little. Kind of scary to not be on any ms meds but would rather not be than to feel bad all the time.
            Marilyn

            Comment

              #7
              Originally posted by ndm0795j View Post
              Hello all,


              I live in Mississippi where the heat is intolerable in the summer.
              I visited Mississippi last year for a family reunion and was so ill from the heat!!! We live in the south as well and the heat can be so intolerable! I am looking at moving north next year!!

              Hope you feel better after a medication change!!

              Comment

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