6 ms·

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 lif

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.

thowaway1001 6y ago
It mat not be only the safety profile, but also the fact that drug patent has expired in 2016. I am sure they’ll come up with an alternative that may have similar or better safety profile and could pay for clinical trials. No company is going to finance Phase 3 trial on patent free drug.
- justinclift 6y ago
  Are you meaning the expiry of the 1999/2000 patents? There seem to be several others, including some filed recently: https://www.drugpatentwatch.com/p/generic-api/BEXAROTENE https://www.drugpatentwatch.com/p/generic-api/BEXAROTENE On a side note, is anyone aware of better info source that "drugpatentwatch.com"? That site seems to lock useful info behind a paywall.
james_pm 6y ago
Indeed. For those with an aggressive form of the disease, I suspect they might be willing to try it and trade MS symptoms for something else at least for a time. Still this is providing some hope that it's at least possible to reverse the damage.
hardlianotion 6y ago
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.
- neltnerb 6y ago
  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.
  - Broken_Hippo 6y ago
    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 previously and started on modern treatments early on, which not only tend to reduce flares (in folks with Relapsing-remitting forms, the most common type) but they make flares less severe. All of this means as treatments get better and younger folks make up more of the statistics, the disability chances should still go down. OF course, there are some folks that do better or worse. I have very few day-to-day symptoms and those are mild: I'm 42. Some folks get in pretty bad shape in their 20s. As far as side effects: Some have a much higher chance of death. When that gets to high, they deem it unsatisfactory. I wouldn't be surprised if this was instead of or including a chance of being even more disabled or damaging heart/lungs or something else that shortens life.
    - neltnerb 6y ago
      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 attack. Anecdotes. I know. Although my progression so far has been fairly in line with my first doctor's statistics.
kzrdude 6y ago
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
djsumdog 6y ago
> 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.
- Fnoord 6y ago
  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.
PragmaticPulp 6y ago
The drug is already available on the market as a cancer treatment. However, don’t underestimate the impact of those side effects. If the drug accelerates heart disease (hypercholesterolaemia and hyperlipidaemia are among the primary side effects) and causes thyroid issues, then it might very well have the effect of worsening quality of life and shortening overall lifespan. This drug doesn’t appear to treat the root cause of MS, but instead shows some efficacy in reversing one of the downstream manifestations of MS. That implies it would have to be taken indefinitely or at least cycled throughout life. I know people want to be free to try different medications, but in this case it would be shortsighted to trade one set of serious, life-threatening health complications for another that might actually be worse.
deleted 6y ago
[deleted]

thowaway1001 6y ago

It mat not be only the safety profile, but also the fact that drug patent has expired in 2016. I am sure they’ll come up with an alternative that may have similar or better safety profile and could pay for clinical trials. No company is going to finance Phase 3 trial on patent free drug.

justinclift 6y ago
Are you meaning the expiry of the 1999/2000 patents? There seem to be several others, including some filed recently: https://www.drugpatentwatch.com/p/generic-api/BEXAROTENE https://www.drugpatentwatch.com/p/generic-api/BEXAROTENE On a side note, is anyone aware of better info source that "drugpatentwatch.com"? That site seems to lock useful info behind a paywall.

james_pm 6y ago

Indeed. For those with an aggressive form of the disease, I suspect they might be willing to try it and trade MS symptoms for something else at least for a time. Still this is providing some hope that it's at least possible to reverse the damage.

hardlianotion 6y ago

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.

neltnerb 6y ago
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.
- Broken_Hippo 6y ago
  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 previously and started on modern treatments early on, which not only tend to reduce flares (in folks with Relapsing-remitting forms, the most common type) but they make flares less severe. All of this means as treatments get better and younger folks make up more of the statistics, the disability chances should still go down. OF course, there are some folks that do better or worse. I have very few day-to-day symptoms and those are mild: I'm 42. Some folks get in pretty bad shape in their 20s. As far as side effects: Some have a much higher chance of death. When that gets to high, they deem it unsatisfactory. I wouldn't be surprised if this was instead of or including a chance of being even more disabled or damaging heart/lungs or something else that shortens life.
  - neltnerb 6y ago
    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 attack. Anecdotes. I know. Although my progression so far has been fairly in line with my first doctor's statistics.

kzrdude 6y ago

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

djsumdog 6y ago

> 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.

Fnoord 6y ago
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.

PragmaticPulp 6y ago

The drug is already available on the market as a cancer treatment. However, don’t underestimate the impact of those side effects. If the drug accelerates heart disease (hypercholesterolaemia and hyperlipidaemia are among the primary side effects) and causes thyroid issues, then it might very well have the effect of worsening quality of life and shortening overall lifespan. This drug doesn’t appear to treat the root cause of MS, but instead shows some efficacy in reversing one of the downstream manifestations of MS. That implies it would have to be taken indefinitely or at least cycled throughout life. I know people want to be free to try different medications, but in this case it would be shortsighted to trade one set of serious, life-threatening health complications for another that might actually be worse.

deleted 6y ago

[deleted]