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  • pennstater
    replied
    Sorry to hear limppy. Hope the shingles clear quickly and your counts normalize. Take care.

    Leave a comment:


  • Seasha
    replied
    Originally posted by limppy View Post
    WELL JUST WANTED TO UPDATE MY EXPERIENCE I GOT SHINGLES 2 WEEKS AGO AND AM ON ANTIVIRUS NOW . I HAVE IT ON MY FACE AND LEFT EYE .. HURTS .. EYE WENT ALMOST CLOSED MY LYMPOCITE WENT DOWN TO .56 AND IT CAME OUT OF MY NERVOUS SYSTEM .
    Oh dear, limpy --- I'm so sorry to hear this. I hope you heal quickly and get the lympocytes within normal range!
    Have you thought about getting the shingles vaccine sometime down the road?

    Thinking of you and let us know how it's going.

    Leave a comment:


  • limppy
    replied
    WELL JUST WANTED TO UPDATE MY EXPERIENCE I GOT SHINGLES 2 WEEKS AGO AND AM ON ANTIVIRUS NOW . I HAVE IT ON MY FACE AND LEFT EYE .. HURTS .. EYE WENT ALMOST CLOSED MY LYMPOCITE WENT DOWN TO .56 AND IT CAME OUT OF MY NERVOUS SYSTEM .

    Leave a comment:


  • KoKo
    replied
    Originally posted by limppy View Post
    Hi wanted to let ya know I finished my 2 nd year 2,nd dose of Mavenclad so now I am good for 3 years. No real big effects from it I think I do feel alittle more sensitive to my other meds , ( my eyes itched) still on my Gabopentin and Baclofin ..
    Terrific! Good for you, limppy!

    Leave a comment:


  • limppy
    replied
    Hi wanted to let ya know I finished my 2 nd year 2,nd dose of Mavenclad so now I am good for 3 years. No real big effects from it I think I do feel alittle more sensitive to my other meds , ( my eyes itched) still on my Gabopentin and Baclofin ..

    Leave a comment:


  • culrey
    replied
    I feel like I am in that RRMS to SPMS group and took my first dose of Mavenclad in Jan '20 and my second in Feb '20. I really was worried I would have some side effects because I felt this was a pretty powerful drug but really didn't experience any at all. Two months after treatment my absolute lymphocytes were 0.9 and a few months after that they were already back at 0.99 so idk if this did much?? I haven't had another MRI and not sure when I will but haven't noticed any improvement in symptoms at all.

    I was actually pretty scared taking an immune system depleter right before COVID hit - and thought I was DOOMED when my husband tested positive! I thought there was NO WAY I wasn't gonna end up with the virus. To our shock and surprise - I never got it!! I'm beginning to wonder if my immune system is just too strong!!

    But, yes, I'm 49 and am probably secondary progressive at this point. I use a scooter most of the time or a walker (which moves much slower). I'm just hoping Mavenclad stops me from getting any worse!!

    Leave a comment:


  • KoKo
    replied
    Originally posted by limppy View Post
    Hi i just started my year 2 1'st dose ( 5 days ) and i am doing good so far . No bad stuff I can feel. My last MRI showed stable

    Glad to hear that, limppy! Thanks for the update.


    Originally posted by limppy View Post
    I am 64 now and my symptoms are more profound my right leg drags and has foot drop, my fatigue levels are not so great,, BUT I stay very active in spite of this

    Staying as active as possible, as our current abilities will allow, is important and beneficial. Good for you!


    Originally posted by limppy View Post
    I look forward to my 3 year period after this with no drugs except my maintance baclofen .gabopentin ,metaxalone ... I'll keep ya posted

    So, after your 2 week treatment of the second year, you're all done - is that correct?

    If that's the case - yay for you, limppy!

    Leave a comment:


  • limppy
    replied
    Limppy again

    Hi i just started my year 2 1'st dose ( 5 days ) and i am doing good so far . No bad stuff I can feel. My last MRI showed stable , yea,, I am 64 now and my symptoms are more profound my right leg drags and has foot drop, my fatigue levels are not so great,, BUT I stay very active in spite of this >>
    I look forward to my 3 year period after this with no drugs except my maintance baclofen .gabopentin ,metaxalone ... I'll eep ya posted

    Leave a comment:


  • TheBeans
    replied
    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.

    Leave a comment:


  • KoKo
    replied
    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

    Leave a comment:


  • limppy
    replied
    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 !!!!!!!

    Leave a comment:


  • KoKo
    replied
    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

    Leave a comment:


  • limppy
    replied
    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 !!

    Leave a comment:


  • limppy
    replied
    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 ????

    Leave a comment:


  • limppy
    replied
    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 ...

    Leave a comment:

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