I just wanted to warn people of potential side effects of Mavenclad.
I started the ‘treatment’ at the beginning of the year, during the first week’s course, I began to become extremely dizzy- essentially worsening the effects of MS that I had been dealing with. During the second week course, the same happened again, only this time one month down the line, my dizziness, balance and general leg weakness have progressed to the point where walking out in public is hazardous, and doing daily tasks are difficult. I have resigned my job due to not being able to carry out responsibilities.
For context, I have been in solid hands-on employment since my diagnosis in 2019 - I had been regular in the gym, in fit and strong shape and even walked a 12Km trail with 500 meter ascent/descent one month before treatment began. One month after my second week course, I am now unable to walk 2 Km without feeling extreme dizziness, balance problems, brain fog, coordination difficulty and lethargy.
Of course, the ms team gatekeepers have shut up shop and are not interested, are offering no solutions apart from to get me in to chat - thinking that sympathy will do any good.
Has anyone else here had the same problems with mavenclad causing relapses and worsening symptoms?
Really, not sure what to do here, feel as though I’m hitting a brick wall, and just want to spread some awareness that mavenclad has caused a worsening that I have never experienced before.
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Crumbs, I’m really sorry to hear that. What a foul thing to happen, when you were hoping for such a different effect on your quality of life and prospects. That’s a real kick in the teeth. We start these drugs with hope in our hearts, don’t we? What was happening that caused you to change up to mavenclad?
Hi Alison,
Yes, to make matters worse, my ms nurse just seems to make justifications for it on the spot, then contradicts what was said later when they have another imaginative explanation.
This is the second DMT I have tried, the first was directly after diagnosis 6 years ago - tecfidera, which seemed the best of a bad bunch, but I had gut complications and stopped soon after. The condition was more or less under control through those years, asides from a couple of minor blips, and the dizziness began about a year ago when I sought out to try a new DMT - and remained at a level where I was able to be functionally normal, go to the gym, go for long and high ascent hikes and even work offshore on boats. Then during my first week of mavenclad, things deteriorated rapidly.
Honestly, hitting a brick wall with the MS clinical team gatekeepers.
That is a tough situation. I guess they’re saying that coincidence in time is not necessarily the same as causation (the worsening might have happened anyway), and of course there’s a grain of truth in that, but it would feel pretty much like causation to me too if I were in your shoes!
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