if anyone needs to discuss i’d also be happy to share my experiences if you reach out.
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).
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!
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.
Of side effects of the process, or of opportunistic diseases during the transition?
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.
[0]: https://www.science.org/doi/10.1126/science.abj8222
- 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.
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.
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.
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.