Mavenclad vs. Tecfidera (and others?)

Post Reply
User avatar
clerkbehavior
Posts: 4

Mavenclad vs. Tecfidera (and others?)

Post by clerkbehavior

After a few months on Vumerity, my neuro wants to stop because of a low absolute lymphocyte count. (I feel conflicted about this; before I switch, I would really like to continue and get blood work done in a few more weeks to make sure everything is still in order). In any case, she instructed me to look into Tecfidera and Mavenclad before our meeting the following week. I won't know whether there have been any new lesions since December until roughly two weeks from now, when my routine MRI is scheduled.
From what I've heard, Tecfidera is essentially Vumerity with stronger side effects. There is a comparable risk of having a low white blood cell count, according to even my neuro. Next up is Mavenclad, which has an entirely different feel but also appears to "build it back up" by wiping out the immune system. What am I missing here? These two sound just as bad as the one I'm on right now.

I'm attempting to learn more and conduct research, but it's all so scary. Weeks of nausea and headaches, terrible gastrointestinal problems, hair loss, respiratory infections, possibly even heart problems, or some other dreadful, serious long-term issue? It seems like everything I read says either "this pill will absolutely destroy your entire body" or "this is a pill that might work for you!" Aid. Please. I have no idea how to sort through all of this noise and fear because I'm still so new to this.

Furthermore, please refrain from recommending infusions, even with the best of intentions. Though I'm not ready for that, I'm open to hearing any and all viewpoints on prescription pills. Why my neuro only recommended these two is beyond me. TIA
User avatar
bricksmore
Posts: 3

Re: Mavenclad vs. Tecfidera (and others?)

Post by bricksmore

My experience of 4 years on tecfidera...loved it, the ease of a daily pill as opposed to injections, no progression, had to be monitored with monthly blood work,no side effects(or so I thought) it gradually lowered my leukocyte count to a level that my doctor was not comfortable with...I cried when I had to switch...if your levels are already low, you may want to discuss with your doctor...I am on TYSABRI IV every 28 days for the last 4+ years, no issues.
User avatar
visualsolution
Posts: 3

Re: Mavenclad vs. Tecfidera (and others?)

Post by visualsolution

I am living through exact same experience. Was on tecfidera and then vumerity for about 5 years until lymphocyte counts dropped. All relapse free. Had to be on no DMT for 6 months until lymphocyte counts came back. Started first round of mavenclad in Feb and March $200k or (10k a pill) thankfully all covered by insurance. Had my first relapse in March and developed a new lesion on my spinal cord that caused me to become numb on my right side from toes to ribs. Steroid infusion followed. Can still walk ok but am definitely less mobile so that sucks. I don't think relapse was brought on by the mavenclad but more that I had no DMT for so long. This is my first relapse since being diagnosed in 2015. No sir, don't like it!
Post Reply