Announcement

Collapse
No announcement yet.

ONE WEEK TO THE DAY AND I'M OFF ALREADY

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    ONE WEEK TO THE DAY AND I'M OFF ALREADY

    Well just like the title says I've been taking Gilenya one week to the day and my Neuro has taken me off of it already. I have been having side effects but nothing to really be concerned about until this morning.

    This morning about 2 hours after I took my meds I started to feel like I was having a nervous breakdown. I had the shakes, I couldn't concentrate on anything and I felt like I was about to come out of my skin. It was a horrible feeling. I called my Neurologist right away and he told me to stop taking it now, right now! I am supposed to call him back Monday.

    I'm not sure if he will allow me to take a pill every other day or not. By his reaction and tone of voice I got the impression that I am done with Gilenya. But we will see. I hate this, this was my last chance at a DMD. I know there are other things out there but I am definitely not into those.

    Even now I still feel lightheaded and dizzy. I about to call it a day at work. Fortunately I can work from home so as I start feeling better this evening I do some work.

    So I will see what happens on Monday.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

    #2
    W -

    Sorry it didn't work for you. You've really tried every DMD?
    An interferon and Copaxone
    Tysabri
    Various oral meds
    I don't know if there are other DMD's out there too.
    Hopefully, either your neuro or someone here can suggest another DMD. If not, perhaps you need to consider seeing an MS Specialist who would have more knowledge about possible treatments than a general neurologist.
    ~ 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


      #3
      MAMABUG I have been on Avonex, Copaxone, Tecfidera, and tested JC+ so I cannot take Tysabri. I think I have covered them all. If anyone has any suggestions I am open.
      Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

      It's hard to beat a person that never gives up.
      Babe Ruth

      Comment


        #4
        Aubagio?
        I'm almost at the end of my 2nd month with it. So far, all is well.
        "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
        Verin Mathwin, The Wheel of Time by Robert Jordan

        Comment


          #5
          I am so sorry that this didn't work for you. I know that you had put all your hope into this being the one. And after all the time and effort to get started on it too!

          You have looked at all the other meds out there and researched the side effects and risks, so there is nothing that I can offer you in way of suggestions.

          sending you good vibes

          Comment


            #6
            This is disheartening, I feel for you!

            I too have been on Avonex, Copaxone and currently Tecfidera. I'll soon be switching due to consistently low lymph counts. Had my most recent lab this week, my doctor called today and wants me to consider Gilenya or Tysabri.

            With regard to Tysabri, I'm also JCV+, so I guess they can monitor my titers(?), and she said the first 2 years the risk is lower (for PML). My approach would be to consider it a stepping stone drug (as I thought tecfidera would be for me) until something new and improved gets FDA approval (hopefully sooner than later.)

            You might not want to discount Tysabri completely.

            Then there's Aubagio, my doctor said she doesn't prescribe it very often (at least recently). I'm not impressed with it's efficacy, but it's better than nothing, so you have that option.

            You're in a tough spot. Keep us posted.
            Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.

            Comment


              #7
              W --

              Yes, sounds like you've tried a lot of them. Hope you can find something that works for you. I'd keep questioning your doc about other DMD's. In the meantime, stay healthy in other ways. Eat a healthy diet, get enough rest, exercise at an appropriate rate for your ability, take some good supplements, etc.

              But, I hope you can find an effective DMD. I truly believe that CAM's alone are not enough.
              ~ 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
                Originally posted by Waydwnsouth1 View Post
                Well just like the title says I've been taking Gilenya one week to the day and my Neuro has taken me off of it already. I have been having side effects but nothing to really be concerned about until this morning.

                This morning about 2 hours after I took my meds I started to feel like I was having a nervous breakdown.
                I'm sorry I'm in a similar boat. Have been on Gilenya for one month and while gastric issues have improved slightly, the depression and cognitive issues are too scary for me to continue. Plus, the shakes and limb weakness and all of the other side effects. Went to every other day, and on in-between days, it feels like I'm having a relapse. I'm much much worse all over then I was just a month ago without any DMD. I'm freaking angry! Never a warning that these things can happen, and never any discussion about coming off the drug either — I had a massive debilitating relapse after coming off Tysabri, and now this. Will have to see what else the doctor suggests, but I seem to have tried everything else that seems appropriate for me. He's not going to like being with me at this upcoming appointment.

                Comment


                  #9
                  I'm sorry you had such a rough experience. Hope you find another DMD that works for you!

                  @Mamabug, what are CAMs?
                  2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

                  Comment


                    #10
                    Originally posted by hope32 View Post
                    ...

                    @Mamabug, what are CAMs?
                    CAM's:

                    Complementary and Alternative Medicines. Treatments that fall outside the realm of conventional medicine. That category would include treatments such as dietary supplements, essential oils, chiropractors, massage, acupuncture, yoga, etc.
                    ~ 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

                    Working...
                    X