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by functionmouse8 hours ago |
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upvoteby ser137 hours ago|
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Archive link: https://web.archive.org/web/20260120080248/https://subfictio...
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upvoteby d-us-vb8 hours ago|
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Worked for me.
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upvoteby ChrisMarshallNY7 hours ago|
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Hugged to death.

MS sucks. There’s varying degrees, though. I know folks that have it now, and ones that died from it.

Some of the treatments aren’t very nice. I knew one chap that was on Interferon, for life.

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upvoteby throwawaymsjs7 hours ago|
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The modern treatments are much more effective than anybody had expected, Ocrecus went from something used in the last resort to standard care in less than a decade. I have no issue with it whatsoever though that’s not the case for everyone, and it’s now available as a 6 month injection rather than a 8+ hour infusion thankfully. The older drugs were unbelievably bad (blindness, infection, you name it), but Ocrecus has been very tame in comparison. Can’t get vaccinated for Measles (and have 0 immunity) but that’s my only limitation really.
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upvoteby SmellTheGlove6 hours ago|
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Glad to hear Ocrecus is working for you! My wife was diagnosed last year and has been on Tysabri for about 6 months. So far, so good. Having to go in for a monthly infusion isn’t something she loves, but zero side effects as of yet. Thankfully it’s a 1 hour infusion not 8.
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upvoteby throwawaymsjs5 hours ago|
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Very glad to hear, both Tysabri and Ocrevus tend to have extremely good outlooks from what I've heard from neurologists. I originally received it before it was commonly perscribed and the assumption then was that it would slow disease progression by 50%, for many like myself it has been essentially a complete halt on progression for nearly 10 years.
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upvoteby SmellTheGlove4 hours ago|
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I'm really glad to hear its going well for you! Her neurologist told us the achievable goal was to stop progression entirely. We were both surprised to hear that. She chose Tysabri because her brother has also had great results with it, and also because it mostly acts to keep your immune system outside the blood-brain barrier, rather than to target specific types of immune cells. Our understanding is you can basically stay on this until it stops being effective or you test positive for JCV exposure, at which point it's on to Ocrevus most likely.
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upvoteby Mezzie6 hours ago|
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I was on Tysabri for a while and I always felt the infusion time was a bit calming. Forced me to step out of life and relax a little bit.
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upvoteby SmellTheGlove4 hours ago|
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If I can ask, what are you on now, and what happened that took you off of Tysabri? Feel free to not answer - it may be a bit sensitive to ask. I'm just trying to understand this all better since this is very new for my family.
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upvoteby Mezzie2 hours ago|
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It's fine, ask me anything you'd like! I was diagnosed 10 years ago and had my first (luckily only so far) relapse 11.5 years ago, so I'm very used to this and remember the first years very well. They're scary.

I'm on Kesimpta now, and I like it. It's worked well for me.

I went off of the Tysabri due to issues with getting it paid for: while there was assistance for the medicine itself, there was not assistance for the administration of the medicine, so I moved to a DMT that I could self-administer. We tried Tecfidera first (this was...I want to say 5 or 6ish years ago), and then when the side effects of that proved to be a problem, we decided to start me on Kesimpta. I've been on the Kesimpta for years at this point, and it seems to be working well, though of course it's hard to tell with a DMT since no news is good news.

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