12 months on tysabri - multiple new lesions
23m, England, highly active remitting-relapsing MS. thanks to an admin error, i had an MRI weeks before starting tysabri that showed 5+ new lesions since my diagnosis (like 3 months before i started treatment)
along with that miserable info, my 12 month follow up MRI has come back with multiple new lesions (i wasn't given a number). i haven't had a single "good" month while on tysabri (though found tysabri itself fine - no side effects or anything beside a handful of bacterial infections) and have had relapses while on tysabri (at the time i was told they were unlikely to be relapses cuz i'm on tysabri, now it's clear they were relapses). based on how i feel at the moment, i'm pretty sure i'm in the midst of an attack right now lmao
sooo, not great news.
my case is apparently being discussed in a couple days, and my MS nurse mentioned x3 potential options.
continuing tysabri for another 6 months, then doing another MRI, just to check whether new lesions are a recent thing or from early on in my treatment. she implied this was unlikely to be an option by immediately mentioning how i haven't had a good month since starting rip, and the fact that my pre-tysabri MRI was done barely 2 weeks before i started treatment, so the new lesions likely occured while on treatment. the lesions also can't really be brushed away as happening right at the start of my treatment considering i've developed new and worsening symptoms in the last 3 months.
switching to ocrevus for a year to see how i do on that. i was gonna switch to it eventually anyway cuz i became JC positive somewhere in between doses 1 and 6 of my tysabri. the nurse gave no indication of how likely this option is. tbh, i'm not thrilled by the idea of waiting another year to see how i do, cuz of how much shit can happen in a year. i don't want to go through "ooh it's probably not a relapse, maybe you're just ill" for 12 more months and find out i've got even more damage rip. i originally was gonna go on ocrevus before the admin error showed how active my MS was and my neuro convinced me to go on tysabri instead (apparently it's a tiny bit more effective??)
HSCT drugs. i meet all the qualifying categories, and prior to starting treatment i'd had more than 2 relapses within 12 months. i'm scared shitless of this option, but it also seems to be insanely effective in cases like my own ?
my MS nurse said she'll call me before my next tysabri jabs with more information and to tell me what is decided as the best option for me, but i'm already going insane with having to wait and it's literally been like 8 hours lmao
has anyone else been in this situation?? what did they decide for you? what's HSCT on the NHS like?? it sounds absolutely brutal