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MS treatment a step closer after drug shown to repair nerve coating

theguardian.com

31–40 of 141 posts

Re: MS treatment a step closer after drug shown to repair nerve coating

#31
I'm confused about why Bexarotene can be sold as Targretin to treat "skin problems"[1], but cannot be used as a potentially life-saving treatment for MS.

Is it that the dosages must be higher to treat MS?

[1] https://www.webmd.com/drugs/2/drug-17979/targretin-oral/deta...

Re: MS treatment a step closer after drug shown to repair nerve coating

#32

It’s kind of disappointing that this drug won’t be used as a treatment. I get that this drug has dangerous side effects but life with MS is terrible and the life expectancy is short 5-10 years. I fully believe that for chronic life threatening diseases people should be allowed to try all sorts of treatments that would be deemed unsafe.

How the disease hits is widely different and this generalization is incorrect - it might get some sufferers correct, but far from all.

Source: friends with very normal lives

Re: MS treatment a step closer after drug shown to repair nerve coating

#33
post #8

Please edit the title to fully spell out Multiple Sclerosis. At first I thought what does Microsoft have to do with nerve coatings?

You’ve overtrained your neural nets on technology.

Please update your training set by reading more generally.

Re: MS treatment a step closer after drug shown to repair nerve coating

#34
Emcell in the Ukraine has been offering fetal stem cells to treat MS and other "incurable" diseases for 25 years now; if treatment early enough then can stop progression and regression (undoing the damage) if not too far progressed.

Documentary on Emcell on YouTube: https://youtu.be/gYRcmDySFyE

The producer is working on another documentary as part of research Emcell is doing on treating infertility - via injecting certain stem cells into the testes.

Re: MS treatment a step closer after drug shown to repair nerve coating

#35

It’s kind of disappointing that this drug won’t be used as a treatment. I get that this drug has dangerous side effects but life with MS is terrible and the life expectancy is short 5-10 years. I fully believe that for chronic life threatening diseases people should be allowed to try all sorts of treatments that would be deemed unsafe.

> with MS is terrible and the life expectancy is short 5-10 years

That's not true at all (edit: oh I see what you meant--see other comments). My mother was diagnosed before I was 5 and survived until my 30s. I volunteered some with the MS society and there were many man and women who had lived with for several years.

For most of her life, there weren't drugs like betaseron or avonex. Those drugs also had terrible side-effects. I remember listening to a much older woman with MS talking to my mom and how when she was younger she got onto some clinical trial, but got terribly terribly ill. She decided then she wasn't going to be a guinea pig.

The woman said her life slowed down, and she couldn't keep up with a lot of her old friends, but formed new ones. She kept on living.

My mother kept hoping she'd be cured and took treatments as they were approved. They had pretty bad side-effects, and they didn't reverse the existing degeneration, just attempted to prevent further damage.

If you're diagnose with something like this, your health decisions are your own and you should make them carefully. But no matter what you decide, keep living. Adjust your life, deal with your "number of spoons," and keep going as best you can, even as you watch your mobility be taken from you by your own immune system.

Re: MS treatment a step closer after drug shown to repair nerve coating

#36

I'm confused about why Bexarotene can be sold as Targretin to treat "skin problems"[1], but cannot be used as a potentially life-saving treatment for MS. Is it that the dosages must be higher to treat MS? [1] https://www.webmd.com/drugs/2/drug-17979/targretin-oral/deta...

Could also be that the MS treatment effects are a different delivery mechanism.

Re: MS treatment a step closer after drug shown to repair nerve coating

#37
post #30

To me, following modern MS research progress is as exciting of an inward journey as space exploration is an outwards one. In fact to the point where I have considered leaving the tech field within the next 5-10 years to partake in it so it's fun to see this here on HN. Just 20 years ago the first disease modification treatments were introduced. These were recurring injections of interferon-beta (1b/1a) for a 18-38% r…

“Just 20 years ago..."

Personally, when people think we are making good progress on something, I’m reminded of these words:

“Before this decade is out...”

Sure, great and rapid progress might require a couple percent of US GDP, and a million people working on a problem, but advancing medical research a few decades in the next 10 years, would benefit everyone.

Re: MS treatment a step closer after drug shown to repair nerve coating

#38
post #34

Emcell in the Ukraine has been offering fetal stem cells to treat MS and other "incurable" diseases for 25 years now; if treatment early enough then can stop progression and regression (undoing the damage) if not too far progressed. Documentary on Emcell on YouTube: https://youtu.be/gYRcmDySFyE The producer is working on another documentary as part of research Emcell is doing on treating infertility - via injecting c…

Its a scam. There is no evidence for any of this. Why are you shilling it here?

Re: MS treatment a step closer after drug shown to repair nerve coating

#39

It’s kind of disappointing that this drug won’t be used as a treatment. I get that this drug has dangerous side effects but life with MS is terrible and the life expectancy is short 5-10 years. I fully believe that for chronic life threatening diseases people should be allowed to try all sorts of treatments that would be deemed unsafe.

What you said about life expectancy is not that clear, so I will clarify: average life expectancy for MS sufferers is 5-10 years shorter than the norm, but this gap continues to narrow.

Oh. I was about to say, my doctor said median was wheelchair in ten years, not dead. The severity varies tremendously, I (as sometime with MS) can totally see people with recent major episodes trading. They might not get another MS attack for years.

Must have been a pretty bad side effect though, my first treatment literally resulted in me needing surgery. If that was better than nothing... I'm just going to guess the side effects are very serious. Most other approved MS drugs have some nasty side effects or another already, the bar must be somewhat high given what it's treating.

Re: MS treatment a step closer after drug shown to repair nerve coating

#40
post #30

To me, following modern MS research progress is as exciting of an inward journey as space exploration is an outwards one. In fact to the point where I have considered leaving the tech field within the next 5-10 years to partake in it so it's fun to see this here on HN. Just 20 years ago the first disease modification treatments were introduced. These were recurring injections of interferon-beta (1b/1a) for a 18-38% r…

As someone with NMO and on rituximab ... I'm all for you joining the many, many people working on these conditions. You have no idea how thankful I was to everyone that has worked in this field (and fought for funding in this field) because only a few decades ago my prognosis would have been MUCH worse.

This news item gives me even more hope.

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