Is anyone a Mavenclad user?

[jimmyd787]

thinking about it. dx 10-03-2001 avonex 10 years then copaxone, for a few years, 2 months of tecfidera now on gilenya ever since. last exacerbation feb 2002. no MRI changes since 2006. then one new lesion last month.

im almost 60 and they wanna stop gilenya and go with either mavenclad or Ocrevus

[limppy]

Hi just checking in I just found out a mole turned to cancer , gettin it cut off.. I got my 3'rd covid shot (booster). my eyes still itch and my elbows also , so my doc upped my gabopentin to 600 mg 3X a day and my blood work showed my absol lymph went up to .88 after a year..
This is a powerfull drug as seen by my problems but I could not stay on my old drugs.

[jimmyd787]

as soon as my active lymphocyte lab gets back to normal im going on mavenclad (gilenya dropped if from 1150 to @ 300) normal is 850-3900 i was 669 after 30 days off of gilenya and having another cbc w/diff drawn 11/05/21 and see where it is. ive been on several drugs last 20 years avonex, copaxone, tecfidera and gilenya....

[Temagami]

Limppy- had you had the shingles vaccine before your episode? Was skin cancer listed as a potential side effect of the Mavenclad? Am still thinking of switching from Ocrevus to Mavenclad as I have no B cells and thus no covid antibody response. Am 11 months post Ocrevus infusion and still no B cells. Even if I do switch, I´ll have to wait a while longer. I´m trying to find a silver lining- maybe for my size the Ocrevus dose was so high that some got past the blood brain barrier.

[limppy]

hi tem no i did not have the shingles vac before mavenclad .i have it now get it first. i have developed exema on my elbows . and lymposites are still low. but still glad i took it.. now that i am 65 no more ms drugs medicare will not cover them ,,

[jimmyd787]

im starting year 1 month 2 in a few days. does anyone get conflicting information about the "dont take any other meds within 3 hours of mavevclad" ? case in point: one pharmacist there told me "no oral meds (pills,etc) within 3 hrs" and that was cool but then i started thinking
"what about non-oral meds?" specifically: nasal inhaler-flonase and topical stuff (voltaren) so i called them back and got a DIFFERENT pharmacist who was pretty adamant "no meds at all in any form/route within 3 hrs of mavenclad"

[limppy]

How is it going Jimmy

[coronado2010]

Update:
For reference I’m an early Mavenclad user going back approximately 2 years. I just visited my Neurologist this week and learned some surprising news. My MRI shows no new lesions. She said at this time I’m finished with this drug and we will continue to watch my annual MRI for new activity. I didn’t see that coming. After all, I was diagnosed in 2010 and have survived the following lineup: Avonex, Tecfidera, Ocrevus and Mavenclad. I finally retired from banking and went out on disability 2 years ago. I use a walking stick and have significant right side weakness. I recently returned from Maui and swam with turtles. Looking forward to diving into Tony Robbins new book Life Force. My glass is always half full

[limppy]

hi coronado i am in my last year on mavenclad i go in for a mri in sept so we'll see how the brain looks . I have also been thinking about stopping drugs . I am 65 on disability and medicare so not very good coverage

[Pistachio]

i am in my last year on mavenclad

Limppy, thank you for this thread. It's nice to follow other's journeys on this med. As you know, I started Year 1 , Week 1 this month. So far, so good but I'm only 7 days out so far.

[jimmyd787]

I finished year 2 of Mavenclad July 2023. My last CBC was March 2024 and my WBC and active Lymphyocytes were still really low. My doc says it may take longer for them to come back up. The pharma company who makes the stuff has no clue and is zero help. I get seasonal flu shots, I have had 2 pneumonia shots, both sets of shingles shots (Zostavax (BITD) and recently, Shingrix, TDaP (2021) and 6 'Rona shots (since Dec 2020). I've been exposed to measles by dirtyhippyantivaxxers multiple times over the years, but my last MMR was Feb 1991 and I can't get another booster for a few more years. (my titres are, somehow, still good) i'm 62.5 years old.

[jimmyd787]

How is it going Jimmy

limppy going OK i just made another mavenclad post