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I'm getting Mavenclad

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    #1

    I'm getting Mavenclad

    It's been 4 very long months. The government here, in Ontario, will not approve me, or, is still deciding if I should be approved. In short, I have not been approved at all. But, Merck/Adveva has decided to treat me for free on compassionate grounds. I received the email today. It seems so sudden after waiting 4 months!

    I am both relieved, excited and scared! This will be my first DMT.

    My pills should arrive in the next 5 days!
    "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
    ~Leonard Cohen

    DX March, 2022. Ontario, Canada
    Tags: None
    • Likes 1
    #2
    Congrats Pistachio! I'm so glad Merck/Adveva fast tracked you and your wait is over. Good luck on this med!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator
    • Likes 1

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      #3
      Lots of luck to you. Hopefully you get your approval, but nice to hear you have an avenue for now to get treatment
      Kathy
      DX 01/06, currently on Tysabri
      • Likes 1

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        #4
        Congrats, Pistachio. Sorry Ontario hasn't approved you, but glad Merck/Adveva is treating you for free on compassionate grounds.

        Best of luck on it.
        Kimba

        “When you change the way you look at things, the things you look at change.” ― Max Planck
        • Likes 1

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          #5

          That's wonderful Pistachio!! I hope it works well for you.

          God Bless Us All
          • Likes 1

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            #6
            Originally posted by Pistachio View Post
            ... But, Merck/Adveva has decided to treat me for free on compassionate grounds. I received the email today. It seems so sudden after waiting 4 months!

            I am both relieved, excited and scared! This will be my first DMT.

            My pills should arrive in the next 5 days!
            How awesome! Congratulations !
            - Faith
            ~ 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.
            • Likes 1

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              #7
              hi PISTASHO I DID MAVENCLAD 5 YEARS AGO . IT SEEMS TO HAVE WORKED BUT IT IS STRONG AND CAN RIP YOU UP .SUGGEST GET A SHINGLES VACCINE FIRST ,,, IT IS MY LAST DMT FOR ME .. SOME SUGGEST IT LASTS FOR 10 YEARS I'LL LET YA KNOW GOD LUCK LIMPPY
              • Likes 2

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                #8
                Pistachio -- have your pills arrived? I'd love an update.

                - Faith
                ~ 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

                  #9
                  Originally posted by Mamabug View Post
                  Pistachio -- have your pills arrived? I'd love an update.

                  - Faith
                  Thanks eveyone!

                  Yes MamaBug, the pills arrived. I started on Nov 10th and took my last dose of Y1W1 (year one, week one) last night.

                  Yes, Loopy, it did sort of "rip me up".

                  Day after dose one and two I had only dizziness. But then, day three my leg started getting wonky. It felt weak and non-compliant but it was actually quite spastic. It's hard to explain but trust me, it wasn't operating very well at all. It's almost like I was having a psuedo-relapse as it was the same leg, back in Feb, that started this whole thing. It lead to an MRI that showed my first cervical lesion - hence, my starting Mavenclad.

                  Today is the first day AFTER my last dose of the first month. I am feeling mostly better and the leg is much improved (but still not fully at my baseline). I am hoping it continues to improve and get back to my "normal".

                  In four weeks I start month two which is another 5 days of pills. Then I wait a year and repeat it all again. I've thought about starting a specific thread documenting my journey so others can follow should they also start Mavenclad. Of course, I have yet to see what the ensuing months will bring as my lymphocytes go down.
                  "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
                  ~Leonard Cohen

                  DX March, 2022. Ontario, Canada
                  • Likes 1

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                    #10
                    Thanks for the update. A specific thread might be helpful for others taking the same med
                    ~ 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

                      #11
                      Pistachio- I just moved these posts to Mavenclad in the MEDICATIONS AND TREATMENT TOPIC so others taking this may benefit from your experience.
                      1st sx '89 Dx '99 w/RRMS - SP since 2010
                      Administrator Message Boards/Moderator

                      Comment

                        #12
                        Originally posted by Seasha View Post
                        Pistachio- I just moved these posts to Mavenclad in the MEDICATIONS AND TREATMENT TOPIC so others taking this may benefit from your experience.
                        Thank you!
                        "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
                        ~Leonard Cohen

                        DX March, 2022. Ontario, Canada

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