Multiple Sclerosis(subfictional.com)
subfictional.com
Multiple Sclerosis
https://subfictional.com/multiple-sclerosis/
36 comments
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!
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!
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.
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.
> 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?
Of side effects of the process, or of opportunistic diseases during the transition?
The latter is my understanding.
I would not mind remyelination + being on a DMT, heh.
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.
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
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
Which drug are they on, if you're okay sharing?
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.
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.
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.
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.
if anyone needs to discuss i’d also be happy to share my experiences if you reach out.
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
[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
Demyelination needs more attention in the general populace.
Thanks very much for posting.
Thanks very much for posting.
[deleted]
N-acetylglucosamine actually is effective against MS.
Article: https://www.ucihealth.org/about-us/news/2023/09/multiple-scl...
Paper: "N-acetylglucosamine inhibits inflammation and neurodegeneration markers in multiple sclerosis: a mechanistic trial"
https://pubmed.ncbi.nlm.nih.gov/37705084/
It is available fairly inexpensively as a supplement.
Article: https://www.ucihealth.org/about-us/news/2023/09/multiple-scl...
Paper: "N-acetylglucosamine inhibits inflammation and neurodegeneration markers in multiple sclerosis: a mechanistic trial"
https://pubmed.ncbi.nlm.nih.gov/37705084/
It is available fairly inexpensively as a supplement.
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
A family member recently died from this. It was gut-wrenching to watch the fast decay of life happen, once full of life, then death, with three years. I donated to find a cure.
should add [2021] to title (old article)
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.
- 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.
>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.
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.
> 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.
That is not the normal boundary.
That is not the normal boundary.
Why publish on the web, if it's strictly personal and you don't wish to hear responses?
I can understand "I don't need advice, duck you" worldview, but strict "you only consume, never think or respond" is a bit weird...
Of course, our comments here are a bit meta on this topic.
Note: after re-reading I may have just misunderstood sarcasm, lol. Oopsie. Ah well.
I can understand "I don't need advice, duck you" worldview, but strict "you only consume, never think or respond" is a bit weird...
Of course, our comments here are a bit meta on this topic.
Note: after re-reading I may have just misunderstood sarcasm, lol. Oopsie. Ah well.
Dead URL
Worked for me.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).