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

theguardian.com

121–130 of 141 posts

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

#121

It's interesting that this drug is a Vitamin A derivative. The structure is very close to another popular drug, Isotretinoin (Accutane), with similar side effects. I imagine Accutane probably doesn't have this effect or we'd have caught it, but how wild would it have been if acne medication also ended up being the cure to MS.

Fascinating. I went through an Accutane treatment regimen as a teenager and went on to develop MS within a few years of finishing the treatment.

With a big enough sample size, we could find someone who developed MS a few years after she stopped eating Broccoli.

It wouldn’t mean it caused it though..

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

#122
post #83

Earlier quoted context omitted.

what's the craziest idea you have heard of that would advance medical science?

Usage of BIL Gates in gene therapy - https://en.m.wikipedia.org/wiki/Transcriptor The possibilities boggle my mind

"Biological computers will probably obviate the use of many pharmaceutical drugs."

My mind is blown, to say the least. Thanks for sharing!

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

#123

While it is sad that this drug cannot continue for MS directly, I love that this is science work at its best. Experimental drug, through the efforts of terminally ill, are able to discover/show/validate quite powerful benefits, but the drug is too dangerous to use itself. So we stop it. It is progress and many times, progress is not easy nor cost free. Thank you to all those who, even in their terminally ill state, h…

The drug used in this study, Bexarotene, is already approved for cancer treatment and available in the United States and Europe. Using Bexarotene in cancer patients makes sense because the side effects are more tolerable than dying from cancer. Using Bexarotene in Multiple Sclerosis patients doesn’t make sense if the net effect is a worsened quality of life (significant thyroid disease) and a shortened lifespan due t…

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

#124

Earlier quoted context omitted.

I am male, which accelerates the progression. But that was what my doctor told me in 2012 for men, even if taking interferon (which I did). And the two big new ones since. I stayed basically great until 2017. But now both hands are mostly numb and my leg is numb. I've taken the best medication available at every opportunity. Now it's progressive. I'm 37 and was diagnosed and treated very early after just one mild att…

Did you happen to be under a lot of stress for long period of times? Did you find any (even anecdotal) correlation between some cause and the result of your disease transforming into progressive?

Stress has never been proven to be a link, though it is often repeated. Being male does sometimes make things worse and males are more likely to have a more progressive form of the disease than females. (The vast majority of patients are females: I know they suspect an interplay of hormones creating different outcomes, but I don't know if they've proven it).

As far as progression, that is something that happens to some people. Some folks never have the relaspses and time in between and others, the disease turns into progressive form. If scientists haven't figured out why some are more progressive or why some folks' MS turns progressive, I highly doubt looking at one's own life is going to find a key to progression. I'm not the parent here, but I can't see the point in such a thing.

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

#125
post #52

While it is sad that this drug cannot continue for MS directly, I love that this is science work at its best. Experimental drug, through the efforts of terminally ill, are able to discover/show/validate quite powerful benefits, but the drug is too dangerous to use itself. So we stop it. It is progress and many times, progress is not easy nor cost free. Thank you to all those who, even in their terminally ill state, h…

One thing I’ve always wondered is: how many drugs have we rejected like this, which were actually bimodal in their safety profile, the way many drugs are bimodal (or polymodal) in their effect profile. I.e., that there’s some inherent difference between the people the drug harms, and the people it doesn’t; and if you can identify that difference, and test for it, then you can safely give the drug to only the people i…

One of the things not mentioned about bexarotene is that it's very teratogenic. That makes it more difficult (but not impossible) to use it for women.

> Materials to support the Pregnancy Prevention Programme in women and girls of childbearing potential taking oral acitretin, alitretinoin, or isotretinoin have been updated. Oral tretinoin and bexarotene do not have a Pregnancy Prevention Programme in light of their oncology indication and specialist care setting. However, healthcare professionals are advised that these medicines are extremely teratogenic and product information should be consulted for contraceptive and pregnancy testing requirements when used in females of childbearing potential.

When used for cancer these side effects are very common (greater than 1 in 10) or common (between 1 in 10 and 1 in 100). Some of these are going to be mild and temporary. But some of them are serious.

> Alopecia; anaemia; appetite decreased; arthralgia; asthenia; chills; constipation; deafness; diarrhoea; dizziness; dry eye; dry mouth; dyslipidaemia; eye disorders; gastrointestinal discomfort; gastrointestinal disorders; headaches; hyperhidrosis; hypersensitivity; hypoproteinaemia; hypothyroidism; increased risk of infection; insomnia; leucopenia; lymphadenopathy; muscle complaints; nausea; oedema; oral disorders; pain; pseudolymphoma; sensation abnormal; skin nodule; skin reactions; skin ulcer; thyroid disorder; vomiting; weight changes

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

#126

Earlier quoted context omitted.

That's not the average now, though - especially not for someone taking medication. If folks ever even need a wheelchair, that is often temporary. It is so much more common to use other walking aids, if you need them at all. And this is still factoring in folks that aren't taking medications and are older and couldn't start on treatments early. This is all changing: People are getting diagnosed earlier than they were…

I am male, which accelerates the progression. But that was what my doctor told me in 2012 for men, even if taking interferon (which I did). And the two big new ones since. I stayed basically great until 2017. But now both hands are mostly numb and my leg is numb. I've taken the best medication available at every opportunity. Now it's progressive. I'm 37 and was diagnosed and treated very early after just one mild att…

Unfortunately, men are so much more likely to wind up with a progressive form of the disease. I'm really sorry to hear that it has 'leveled up' like this. This is one of those fears in the back of my head, though with women it becomes more likely after menopause. I truly hope it doesn't get you down too much anymore and that you are able to find some enjoyment in life despite all this.

I am lucky, mostly: I'm 42 and have a bit of fingertip numbness and get some electric shocks sometimes. I wasn't diagnosed until around 2 years ago, though I had ON in my 20's.

It is somewhat odd, though: My neuro first tried to put my fears to rest, assuring me that it wasn't the same disease as it was even 5 years ago due to the drugs available. I wish more of them worked on progressive forms as well, and I'm still hoping for some miracle - it doesn't have to be a cure, per se, but something that at least heals more often.

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

#127
post #80

Earlier quoted context omitted.

My partner suffers from relapsing-remitting MS and it's horrible. Out of nowhere, body and brain half-quit working. Needs wheelchair, constantly confused. And then suddenly one day it stops. I like to hope we'll figure this out during our lifetime.

Check out Wahls Protocol.

The author of the diet herself seems to acknowledge that it’s very much unproven. I very much doubt there’s more to it than “unhealthy overweight people do better if they lose weight and eat more healthily”.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6412750/

Personally I’ll stick with treatments that have have had their efficacy well proven through rigorous medical studies rather than ones designed to sell hope on amazon.

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

#128
post #110

Earlier quoted context omitted.

This made me laugh. You read tons of scientific papers? Good for you. As anyone with an auto-immune disease and seriously interested in healing can tell you: AIP, if followed to the letter, works absolute wonders within even just a single god-damn day. But sure, read your papers... I am sure they are funded by people who have a huge interest in the result that you can cure 30% of the general population by merely chan…

I down-voted this comment for its tone. This is a thorough and well-informed rebuttal of the parent comment, but it's buried under an unnecessary layer of sass and sarcasm. I appreciate your passion, but we can do better than this.

What is thorough and well-informed about the comment? Genuine question.

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

#129

Earlier quoted context omitted.

How would CRISPR prevent MS? Autoimmune diseases seem a poor fit.

Maybe it wont help you if you developed MS, but it could help you before that. MS seems to be caused by some unknown combination of environmental factors, and genetics. You fix the bad genes, and you may become immune.

It occurs more often in females (who have a stronger immune system), than males. That being said, my father had it. I've always known my father as being ill, having MS.

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

#130

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 sid…

Warning: be wary when you read "MS treatment" in a news title. You need to look into what exactly is treated. I'll explain this further below at [1].

There's a slowly progressing form of MS, and a quickly progressing form of MS. I'm not sure of the medical names in English.

You can definitely become old with MS.

My father got the diagnose in begin 70s (1972?) and I was born in 1983. He passed away in 2015 due to complications of MS. The disease affected him everywhere. I mean, I never seen him properly walk, but he only ended in a wheelchair end of '00s. It affected his short-term memory. It affected his kidneys, he was on dialysis for about 6 years. Eventually due to other complications he got infections, ended up with an amputation. He never fully recovered from that. He got infections elsewhere, and half a year later passed away.

[1] My father always kept hope for getting a treatment. He tried a lot of (insane) diets back in the 70s and 80s. None worked. Treatment-wise, they can stop the disease from progressing, but the people who get that treatment who are first in line are youth and people with the quickly progressing version. My father lacked both these variables, so he down below on the list.

Now, from what I understand in this century there's been various medication which can severely slow MS progression down, or even (more recently) completely halt the progression. The challenge with MS nowadays is reversing the damage done.

> But no matter what you decide, keep living.

We decided to stop with dialysis because QoL (Quality of Life) was near 0. My father's body was done. He's always fought the disease, till that point, and he had the mindset you described. He had to adapt to his new limitations all the time. I grew up with a father who was cursing a lot, but had a strong will (I suspect he had autism, like I have).

What I'd argue you need to realize is go carpe diem _without_ doing stupid "YOLO" stuff. If the progression of the disease cannot be stopped) your QoL is going down, and you don't know exactly how it is going down (you may have some ideas though, and you get monitored by doctors). You can use this to plan things you still want to do.

I also want to add that growing up with an ill father affected me in some negative ways, but there's also a clearly positive one. I have compassion for ill people, for weaker people, for minorities, etc. I believe it is because of growing up with an ill father, because the rest of my family on my father's side (cousins most notably) is [IMO] weak in this.

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