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Is anyone a Mavenclad user?

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    Is anyone a Mavenclad user?

    Greetings,

    I just finished the first 5 days of this medication and because of all my excitement want to jump online to read others feedback. I'm surprised to learn it doesn't appear to be a widely used treatment by the online community. I'm part of the UC hospital system here in So. CA and sometimes it feels like they are on the cutting-edge of treatment options. That or maybe the medication has horrific side effects that I'm ignoring 😂 I tried Ocrevus and before that Tecfidera but have been experiencing significant right-sided weakness and walk with a limp in the last few years. Still employed full-time but can see a future on disability. Being the breadwinner and having young children the thought of making this decision sounds unimaginable. Removing the stress out of my life has never been a prescription I've been able to stomach. So, our new strategy is based on the theory that historically we've been treating t-cells when perhaps my MS might be more B-cell driven. Whatever the case, I'm of opinion the next greatest thing is out there somewhere and only a matter of time until we uncover it. I will be sure and update my findings along the way!

    Cheers,

    #2
    Am curious as to why the switch from Ocrevus as its mode of action is to eliminate B cells, as does Mavenclad.

    Please do keep posting along your cladribine journey.

    Comment


      #3
      Originally posted by Temagami View Post
      Am curious as to why the switch from Ocrevus as its mode of action is to eliminate B cells, as does Mavenclad.

      Please do keep posting along your cladribine journey.
      No new lesions discovered during the two years while on Ocrevus but a dramatic drop in mobility. Can't leave the house without AFO and entire right side is beginning to atrophy. Still limp around 24 hour fitness and flex whenever I get the chance 😁

      Comment


        #4
        I am looking into this medication closely. Anyone taking it? And how are they doing on it?

        Comment


          #5
          ME TOO

          I am looking into starting Mavenclad now switching from Tekfidera ,, as long as my insurance approves it .. It sounds great from all my reading about it .. Does anyone have any bad effects from it.. I really like the amount of coverage from just 4 weeks of meds !

          Comment


            #6
            Mavenclad

            So I'm curious to know how you are doing on Mavenclad? I, too, have been on Tecfidera, then Ocrevus and am now at the point that I am pretty dependent on a walker or even mobility scooter so am planning on trying Mavenclad. My MRI's have really been stable but I just feel like I'm getting progressively worse - maybe have transitioned to SPMS? Still working full time though and would like to keep it that way as long as I can!

            I'm a little surprised at what little conversation there is on here about Mavenclad!

            Comment


              #7
              HI

              Well I started mavenclad finally did day 3 and no problems .. let ya know more later

              Comment


                #8
                Originally posted by limppy View Post
                Well I started mavenclad finally did day 3 and no problems .. let ya know more later

                That is great to hear! I was wondering if I would still be able to work after taking what seems to be a pretty powerful pill! So it didn't make you nauseous or drowsy? I haven't had any negative reactions to any other meds so I'm hoping this won't cause me any problems. Its pretty nice I won't have to try to remember to take medicine or go and get infused!!

                Please keep me/us posted on how it goes!!

                Comment


                  #9
                  FEEL GOOD

                  HI WELL I FINISHED MY FIRST WEEK ON MAVENCLAD AND NO BAD EFFECTS I FEEL GOOD AND AM EXCITED TO GET STARTED .. NOW MY WAIT TILL MONTH 2 .. I AM HAPPY SO FAR ...

                  Comment


                    #10
                    FEEL GOOD

                    WELL I STARTED MY SECOND MONTH ON MAVENCLAD SO SO GOOD NO SIDE EFFECTS YAHOO
                    I AM REALLY HAPPY SO FAR .. MY BIGGEST FEAR IS IT GOING TO WORK ????

                    Comment


                      #11
                      finished my second round

                      Hi I have finished my 2'nd round of Mavenclad in mid Nov and am doing good .. I feel my ms has stabilized , I just had a MRI and looks good ( not increasing) my Lymphocites are down to .57 now after 2 months so well see if it goes up !!! I do like the freedom of less drugs till Oct 2020 . Still need Gabopentin !!

                      Comment


                        #12
                        Originally posted by limppy View Post
                        Hi I have finished my 2'nd round of Mavenclad in mid Nov and am doing good .. I feel my ms has stabilized , I just had a MRI and looks good ( not increasing) my Lymphocites are down to .57 now after 2 months so well see if it goes up !!! I do like the freedom of less drugs till Oct 2020 . Still need Gabopentin !!
                        Hi limppy ~

                        I'm not on a DMT, but love to see when a member is having success.

                        Glad to know that you are doing well with Mavenclad!

                        Hope it continues!

                        Keep us informed, as you have been doing.

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

                        Comment


                          #13
                          Limppy again

                          Hi All I just had my neuro follow up again my mri showed no new activity .. Yea my last blood test showed low lymphocites but my next blood will be mid april i hope to see an increase so far tolerating well ... I had to stop ampyra due to alergic and walking has suffered but i compensate with a brace and a darcy x brace ...
                          hang in there the virus will be over soon !!!!!!!

                          Comment


                            #14
                            Originally posted by limppy View Post
                            Hi All I just had my neuro follow up again my mri showed no new activity .. Yea my last blood test showed low lymphocites but my next blood will be mid april i hope to see an increase so far tolerating well ... I had to stop ampyra due to alergic and walking has suffered but i compensate with a brace and a darcy x brace ...
                            hang in there the virus will be over soon !!!!!!!
                            Hi limppy

                            Great to learn that your mri showed no new activity, and you're tolerating Mavenclad well.

                            Good luck in April for an increase in your lymphocytes.

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

                            Comment


                              #15
                              All of the posts here are of great interest to me. I had a check-up with my neuro just this morning (virtual appointment, due to Covid) and he was encouraging me to go on Mavenclad. Gave me his take on the drug and asked me to think about it for a few months and that we'd talk about my decision in December when I see him next. Everything he said sounded good, so I went home to do some research and to ask my son for his professional opinion as he is a pharmacist in a local hospital. What I learned took the shine off this med's description for me and here's why:

                              From what I found to read about it, it's generally the drug-of-choice for people who are progressing out of RRMS and into secondary-progressive. Is this the case with most of you? I'm definitely RRMS and I have had no flairs and no symptoms for years....literally years. My blood labs come back good consistently and my last MRI looked so much like the MRI I had done before that (literally 8+ years ago....I kept wiggling out of getting them done every 2 years) my neuro had to look at the films twice before he told me that my MS is "amazingly stable."

                              The reason he is encouraging me to be on this drug is that I am approaching that 65+ age group where MS seems to sort of fizzle out or weaken or just goes to sleep. I am not starting a discussion/debate on this topic here (plenty of that in other threads out there) but for me, without flairs or symptoms for so many years---I just wanted a break. Been doing various treatments since 2003 and I just wanted some time off and my neuro gave me the green flag when I told him this.

                              So, a year+ has passed since going off Plegridy (the last treatment I was on) and I feel fine. No flairs, no symptoms, no pseuo-symptoms...just fatigue which hasn't changed much since Day 1 (am on Modafinil for that). And if I'm not progressing then why do I need to go on this new drug? He says he'd like to be able for me to not have to live on high alert for anything to pop up between now and when I turn that magical number of 65. Personally, I don't think MS knows that turning 65 means anything, but apparently the research is against me on this!

                              I'll continue to monitor this thread to see how others are doing with it and to see if anyone else has been told to go on Mavenclad when their progression really doesn't seem to warrant it.
                              Wendy
                              "There are signs everywhere...."
                              "Life is wasted if it's not lived as an adventure."

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