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Siponimod Approved (Mayzent tablets)

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    #16
    Originally posted by Jennaly16 View Post
    Hey all!

    Update- almost three weeks on Mayzent and it's the best i've felt in a while. I did have headaches occurring almost daily. Nothing that kept me down but enough to take some Ibuprofen.

    I actually went away this weekend and did some walking, shopping, hanging outside, touring and just constant moving in the horrible, hot weather. I didn't get the fatigue i used to get and wasn't down and out the next day. I even was able to enjoy a few alcoholic beverages while i couldn't do on Tysabri (for whatever reason one drink on Tysabri made me completely dehydrated and i would fall).

    I know it's new and only time will tell but this weekend i actually said it was the most normal i've felt since being diagnosed! I'll check back though to update as it's still early on the medicine.

    Going to knock on wood now
    Jennaly

    Thanks for the update!

    Glad that you had a very good weekend!

    Hoping for you that Mayzent continues to work well for you.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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      #17
      Advice

      Im a Canadian but am treated at Cleveland Clinic. They are suggesting Mayzent. How are you doing on it? Any advice?

      thanks!
      paulette


      Originally posted by Jennaly16 View Post
      As someone who started taking Mayzent i will say the testing beforehand was not that bad. I did have an EKG, EEG and eye exam. All that are probably good to have on file anyway for future reference. The eye exam was part of my yearly check up anyway and EEG was done right at my neuro office. EKG was done right at my PCP office. There was some blood work as well but a visiting nurse came to my house and it took 10 minutes. Visiting nurse could also do the EKG.

      Everyone has a right to what they want to take and should do what is comfortable. Only speaking to the work up for the medicine was not that bad in my opinion. I also feel less nervous being on it than i did with Tysabri due to the PML as i was JC +.

      Again, everyone has different comfort levels and opinions. Just ask me again in 6 months how i feel about it

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        #18
        I feel really good on it! I do get some headaches but nothing that isn't manageable. It's probably the best i've felt since being diagnosis a year and half ago.

        I've only been on it since July so i haven't had any MRI's yet to confirm it's working but physically it's been awesome! Definitely recommend for someone to give a try if willing!

        Best of luck! Keep me updated!
        Dx March 2018; possible first episode: August 2011
        Tysabri May 2018-June 2019, Mayzent July 2019

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          #19
          I've been following this thread. I've had MS since 2002 and am likely in SPMS, or at least moving towards it. I've actually been fairly stable for the past year or more, likely due to diet and lifestyle changes. So, I'd be somewhat reluctant to make med changes while I'm doing OK.

          But, it's always good to know what my options are for the future. This disease is not usually very predictable.
          ~ 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.

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            #20
            Starting in November!

            Thank you for your reply! Iím nervous but cautiously optimistic . Iíve had a very active case since 1997, but transitioned to active spms a couple years ago. I moved care from Canada to Cleveland in 2016.
            Ive been on rebif, tysabri & ocrevus. I couldnít tolerate ocrevus and the data at Cleveland suggested mayzant was a better choice at this stage.
            im just finishing my shingles vaccination because the bloodwork showed I lost immunity to chicken pox so Iíll be starting it in 6 weeks .

            Iíll post as soon as Iíve started and will keep this thread updated for sure !
            Paulette

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