[HN Gopher] Multiple Sclerosis
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Multiple Sclerosis
Author : luu
Score : 60 points
Date : 2026-03-26 22:37 UTC (5 days ago)
(HTM) web link (subfictional.com)
(TXT) w3m dump (subfictional.com)
| functionmouse wrote:
| Dead URL
| d-us-vb wrote:
| Worked for me.
| ChrisMarshallNY wrote:
| 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.
| throwawaymsjs wrote:
| 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.
| SmellTheGlove wrote:
| 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.
| Mezzie wrote:
| 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.
| SmellTheGlove wrote:
| 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.
| Mezzie wrote:
| 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.
| throwawaymsjs wrote:
| 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.
| SmellTheGlove wrote:
| 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.
| ser13 wrote:
| Archive link:
| https://web.archive.org/web/20260120080248/https://subfictio...
| prplfsh wrote:
| https://www.astrazeneca.com/what-science-can-do/topics/next-...
|
| AstraZeneca is doing some really interesting research in this
| area - cell therapies that reset the immune system to eliminate
| the dysfunctional cells driving autoimmune disease, and then
| allow a healthy immune system to rebuild (for diseases like
| lupus, rheumatoid arthritis, and multiple sclerosis).
| konschubert wrote:
| Today, there is also AHSCT.
|
| There are already clinics where they basically remove your
| immune system and give you a new one. If you don't die in the
| process, you are likely to be cured of MS.
|
| (Any existing damage will remain.)
|
| Currently this is reserved for the most quickly progressing
| cases but if we can make this safer and cheaper, it might in
| future be applied as an early stage cure, so people can go on
| to live healthy lives.
|
| That being said, Astra Zenecas approach does seem much safer,
| if it's proven to be effective!
| JoshTriplett wrote:
| > There are already clinics where they basically remove your
| immune system and give you a new one. If you don't die in the
| process
|
| Of side effects of the process, or of opportunistic diseases
| during the transition?
| SmellTheGlove wrote:
| The latter is my understanding.
| SmellTheGlove wrote:
| Yeah AHSCT is no joke. I mentioned in another comment my wife
| has MS - diagnosed last year in her mid 40s with thankfully
| no severe impairment. They discussed AHSCT with us but didn't
| recommend it unless another disease modifying treatment
| didn't work. Thankfully, Tysabri seems to be working well for
| her.
|
| My mom passed from leukemia years ago. Or rather, from an
| infection as she was starting HSCT. I'm sure it's safer than
| it was 30 years ago, but being without an immune system for a
| period of time really is still a last resort.
| johnisgood wrote:
| I would not mind remyelination + being on a DMT, heh.
| mjlee wrote:
| Anokion (now bankrupt) also seemed to have some progress along
| these lines (link below).
|
| A close family member suffers from MS and is on the more
| effective but less safe drugs available. They haven't suffered
| a relapse since starting them four years ago, but they have
| been hospitalised twice as a result of side effects.
|
| As we learn more about the relationship between the immune
| system and various seemingly unrelated diseases the research
| and understanding has massively increased over the last few
| years. I'm cautiously optimistic that better treatments aren't
| far away. An ancestor was lobotomised for hysteria in the
| 1960s, before being diagnosed with MS.
|
| https://clinicaltrials.gov/study/NCT04602390
| SmellTheGlove wrote:
| Which drug are they on, if you're okay sharing?
| mjlee wrote:
| Ocrelizumab/ocrevus. Initially as an infusion, but the
| doctor recommended monthly injections after neutropenic
| sepsis.
|
| After moving to injections there was a hospitalisation for
| an upper respiratory tract infection, but not nearly as
| serious.
|
| On a positive note, MRIs have shown no new lesions, and bio
| markers seem to show no relapses.
| SmellTheGlove wrote:
| It would be amazing if this type of treatment worked out. MS in
| particular seems to be a race between technology and your
| immune system. You hope the next cutting edge treatment is
| ready by the time the current state of the art stops working
| for you.
| caycep wrote:
| not my primary field, but I will say, though, from the folks we
| see in our clinic, nowadays w/ ocrevus/kesimpta/rituxan,
| patients are way more stable and dealing with way less side
| effects than 10-15 years ago.
| maxall4 wrote:
| I was part of a team researching MS at a university a while ago.
| It truly is an endlessly fascinating disease. Most evidence
| currently points to MS being caused by a combination of Epstein-
| Barr infection and genetic factors [0,1]. It is hypothesized that
| Epstein-Barr triggers autoimmunity which results in the
| prototypical demyelination [2].
|
| [0]: https://www.science.org/doi/10.1126/science.abj8222
|
| [1]: https://www.pnas.org/doi/10.1073/pnas.2424986122
|
| [2]: https://www.nature.com/articles/s41586-022-04432-7
| freezystem wrote:
| https://neurosciencenews.com/gut-immune-responses-ms-trigger... A
| landmark study from Keio University (published March 2026 in
| Science Immunology) has identified a key mechanism linking the
| gut to MS. This opens the door to new MS treatments targeting the
| gut itself -- such as modifying gut bacteria or blocking the
| abnormal antigen-presenting activity of IECs -- rather than
| broadly suppressing the immune system
| moralestapia wrote:
| >First, a request: We do not wish to receive treatment or
| management advice for MS, including anything related to diet or
| lifestyle.
|
| This, please. People tend to think that publishing a blog is some
| sort of "social" activity, a two-way conversation, a way to
| build/keep a small community. It is not, as a reader you're just
| expected to consume the content and move on; I hate when people
| overstep that boundary, jeez.
|
| >How you can help
|
| >We will continue to need your support.
|
| >I'm sure we're going to need help with things here and there.
| Running errands, taking care of things around the house, etc.
|
| >Gift cards have been suggested as one way folks can lend a hand
|
| Hey, this is great! Thank you for being very clear on what your
| needs are, that makes is so much easier to just reach out and
| help in a way that it wouldn't bother you. As you say gift cards
| are great because you don't even have to interact with the person
| sending it (COVID reasons), we can just send it to you, you
| receive it, if you're busy you don't even have to reply right
| away.
|
| >We will communicate those requests as needed.
|
| Thank you for the trust you put in us. I will remain pending of
| this, I can't wait to help.
| Finbarr wrote:
| MS treatments tend to take 3 forms:
|
| - immune reset (sledgehammer that can "cure" diseases like MS but
| with many side effects and potential complications)
|
| - immune suppression (super effective but with increased risk of
| infections and blunts vaccines)
|
| - immune redirection (less effective but doesn't mess up your
| immune system so badly).
|
| It's only in the last ~10 years that super effective treatments
| that can stop ~99% of lesion progression have existed- Ocrevus
| and Kesimpta. These are anti CD20 disease modifying therapies
| that destroy all your B cells. The memoir of Dr. Stephen Hauser-
| "The Face Laughs While The Brain Cries"- provides a fascinating
| insight into the development of these treatments over the last
| ~40 years of his career.
|
| There are active trials of newer types of treatment and a lot of
| progress is being made in the MS space. It used to be a "death
| sentence" disease but is quite manageable for many sufferers now.
| It's different for every individual and I wish the blog author
| good health.
| jlukic wrote:
| I've been on Tysabri for 3 years. I think anyone looking at this
| problem should just at the network meta analysis of outcomes from
| DMTs. You can think through each options risk profile, and then
| make a reasonable choice for your preferences. consensus.app is a
| good starting place for evaluating the research quickly.
|
| if anyone needs to discuss i'd also be happy to share my
| experiences if you reach out.
| ninju wrote:
| should add [2021] to title (old article)
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