Aa
Disability and Interferon News
Maxcat, and Theanea brought this up, and I hope you don't mind an add-on.
All,
This link is to a solid source of info below. It's an abstract from this years meeting betweeen the Consortium and ACTRIMS.
It does record the interferon and disability study as well, among other important ones.
So, for clarity, I would not want to come across as someone who is against studies like this - obviously, these are needed for future studies in biomarkers.
But, for pete's sake, the reporting of this study is so out of context. And, where are the imitations to the survey?
http://ijmsc.org/doi/pdf/10.7224/1537-2073-14.S2.1
Couple key points to our recent discussions and news from studies regarding interferon and disability
(Page 37 from the link)
CHANGES IN DISABILITY STATUS IN INTERFERON BETA–TREATED MULTIPLE SCLEROSIS PATIENTS: A COMPARISON OF THE EXTREMES
Methods
~ In this retrospective cohort study, the British Columbia MS Database, a prospectively collected database, was queried for patients with definite relapsing-onset MS who had been exposed to an IFNâ for at least 6 consecutive months (based on linked data from PharmaNet) with an Expanded Disability Status Scale (EDSS) score between 1.0 and 5.0 at IFNâ initiation and with at least 3 years of active follow-up time from IFNâ initiation.
Would love to know the breakdown of how many patients in theis "database" were @ 6 months, etc., as this was their minimum, and also their "follow-up time." What's that mean? How do they know their patients were compliant? Did the follow-up include some special labs to check for interferon? In RRMS, disability can very so dramatically different from year to year, let alone an assessment attempt over 3 years. So why?
Conclusions: We did not find substantial differences in terms of the baseline characteristics between two groups of IFNâ-treated relapsing-onset MS patients with extreme profiles of disability change (over 3 years).
Really? 3 years? I'm not surprised substantial differences where not found, why is everyone else? Reporting should contain context - especially so in this case.
Result reporting should not cause doubt for good people, who take good medicine, for a bad disease that needs to be seriously managed, so it doesn't get worse, Juuuuust because every media outlet decided to "headline" it out of context of existing facts.
~Shelly
p.s. Just when you thought I was done...hahah I do intend to wrastle a good handful of the "rest of the story." Analyze it, and put it back out for thoughts because I feel it's super important.
(((Hugs)))
All,
This link is to a solid source of info below. It's an abstract from this years meeting betweeen the Consortium and ACTRIMS.
It does record the interferon and disability study as well, among other important ones.
So, for clarity, I would not want to come across as someone who is against studies like this - obviously, these are needed for future studies in biomarkers.
But, for pete's sake, the reporting of this study is so out of context. And, where are the imitations to the survey?
http://ijmsc.org/doi/pdf/10.7224/1537-2073-14.S2.1
Couple key points to our recent discussions and news from studies regarding interferon and disability
(Page 37 from the link)
CHANGES IN DISABILITY STATUS IN INTERFERON BETA–TREATED MULTIPLE SCLEROSIS PATIENTS: A COMPARISON OF THE EXTREMES
Methods
~ In this retrospective cohort study, the British Columbia MS Database, a prospectively collected database, was queried for patients with definite relapsing-onset MS who had been exposed to an IFNâ for at least 6 consecutive months (based on linked data from PharmaNet) with an Expanded Disability Status Scale (EDSS) score between 1.0 and 5.0 at IFNâ initiation and with at least 3 years of active follow-up time from IFNâ initiation.
Would love to know the breakdown of how many patients in theis "database" were @ 6 months, etc., as this was their minimum, and also their "follow-up time." What's that mean? How do they know their patients were compliant? Did the follow-up include some special labs to check for interferon? In RRMS, disability can very so dramatically different from year to year, let alone an assessment attempt over 3 years. So why?
Conclusions: We did not find substantial differences in terms of the baseline characteristics between two groups of IFNâ-treated relapsing-onset MS patients with extreme profiles of disability change (over 3 years).
Really? 3 years? I'm not surprised substantial differences where not found, why is everyone else? Reporting should contain context - especially so in this case.
Result reporting should not cause doubt for good people, who take good medicine, for a bad disease that needs to be seriously managed, so it doesn't get worse, Juuuuust because every media outlet decided to "headline" it out of context of existing facts.
~Shelly
p.s. Just when you thought I was done...hahah I do intend to wrastle a good handful of the "rest of the story." Analyze it, and put it back out for thoughts because I feel it's super important.
(((Hugs)))
Points I took away from the NYT write up to announce research finding about interferon beta and MS disability progression.
All remarks in quotations are taken from the online article:
http://www.nytimes.com/2012/07/18/health/research/multiple-sclerosis-drug-doesnt-stop-disability-study-finds.html
The GOOD NEWS:
(FYI: Some of this was easy to miss. News reports sometimes have a way of making good news sound bad. Besides, most of this good news didn’t make it into the lead paragraph or two…. or six. You had to go pretty deep.)
1.) CONFIRMATION was given that interferon beta DOES help reduce the development of brain lesions and DOES limit the frequency of MS relapses.
There you go. All is not lost.
2.) Helen Tremlett, PhD, study report author and associate professor of neurology at the University of British Columbia, “cautioned against” a fear I’ve seen expressed here in our own MS community forum.
She asked people to remember that interferon beta is NOT useless. Did anyone else notice that?
Personally, I don’t believe ANY of the disease modifying drugs are useless and see no reason to stop taking the only drugs we have that offer a sliver of hope for diminishing disease presence.
3.) I was pleased to read Dr. Tremlett’s comments affirming, “These drugs were licensed because they reduce relapse and have a better outcome with lesions. That has not changed.”
See? She thinks so too :)
4.) Following a disclaimer type listing of study limitations the article eased toward its end with this statement, “But after controlling for sex, age at onset, disease duration, relapse rate and other factors, they could find no association between taking interferon beta and any reduction in progression to disability.”
To which Dr. Tremlett remarks, “Relapses and brain lesions do not, apparently, drive disability.”
Ahhh, what did she say???
Wondering why I consider this good news?
Read it again please.
She said, RELAPSES AND BRAIN LESIONS DO NOT, APPARENTLY, DRIVE DISABILITY!
I consider that to be a HUGE statement. I hadn’t thought there was an expert who would CONSIDER such a thing let alone say it OUT LOUD!
MANY of us little people (the ones living with MS) have asked again and again for an explanation of WHY we experience new symptoms in the absence of new lesions. It seems someone other than us has FINALLY asked our question. If so, perhaps a new chapter in the search for answers AND solutions can be opened. And maybe, just maybe some of the lesion counting can be stopped.
At a minimum, that qualifies as potential good news.
5.) The very last paragraph makes the boldest good news proclamation of all (even though I’d guess the reporter never realized it). The entire content is contained in three sentences so I’ll quote it in full.
“There may be other processes at work,” she [Dr. Tremlett] added. “In an ideal world, we want drugs that target whatever is driving long-term disability. We need other drugs aiming at other targets in the brain.”
Other processes Dr. Tremlett? Other drugs with other targets? Like DMD twins maybe? DMD-1 to modify disease and DMD-2 to modify disability? Ohhhh, I like it. Here’s to a future of help and hope for the younger-than-me generation of PwMS.
The BAD NEWS:
(AKA: Facts that sometimes take on a big, bad life of their own when stated in isolation.)
1.) This study concluded that PwMS “who took interferon beta were no less likely to suffer long-term disability than those who took none.”
Thank you. It’s been suspected and suggested all along. It doesn’t mean PwMS shouldn’t appreciate some freedom from the short-to-moderate-term disability associated with exacerbations.
2.) You can’t have Dr. Tremlett as your MS doctor. She holds a staff position in the Division of Neurology, Department of Medicine, The University of British Columbia with a PhD in Pharmacy and Pharmacology.
3.) I didn’t actually find any certifiable bad news (but I guess that’s good news…).
3. (revised) I can’t pretend I was pleased to see Eeyore type responses attributed to two MS experts who represent major university affiliated hospitals here in the good old U.S.A.
In the end, I AM REMINDED that:
1.) When the media presents MS research reports (anything, actually) they seem to enjoy painting a dark and ugly picture of the disease. In truth, MS isn’t a very attractive disease (if such a thing exists). But after the initial fear and some time to adjust, living on the inside of the diagnosis usually isn’t quite as bleak as those on the outside seem to imagine.
I’m glad that after using long ugly brushstrokes to create a dark word picture, NYT writer Nicholas Bakalar chose to attach a disclaimer that “many people live with the disease for decades, still able to walk and work with minimal disability.” Well then, maybe we will be okay after all - WITH or WITHOUT so much immediate worry about the long-term.
2.) The reported findings don’t change much of anything for those of us presently living in the trenches. In fact, I heard similar arguments leveled against my own DMD of choice (Copaxone) before I ever started using it to replace the money in my pockets. Hadn’t I read the company’s printed insert?! Didn’t I know ‘they’ had admitted ‘in their own words’ that there was no ‘proof’ Copaxone could stop or delay disability progression?!
Maybe it’s true (even if I never did find it in print). It just wasn’t enough to stop me from trying Copaxone then. And now, nothing is convincing me I’d be better off giving it up. I hope others aren’t going to give up either.
3.) I’m okay accepting a risk of long-term disability that equals the risk of PwMS who don’t take advantage of disease modifiers. Why? Because impacting long-term ability would be great but a less-than-perfect possibility is still far better than hopeless.
I’m willing to ‘settle’ for reaping the benefits of having my MS served up with fewer unpredictable and ill-timed flares. It’s a lot better than the choices we had a decade or two ago. Call me crazy but I choose to avoid the rigors and lost time even ONE additional flare will demand in exchange for a bid to (maybe) return to baseline.
Well, that and I’m secretly hoping to gain a little extra…. ah, something. Something as yet unproven - perhaps even unsuspected - by researchers…. or reporters.
~~~~~~~~~~~~~~~~~
[That’s my take. It is my intention to post this in multiple threads containing statements of concern about the matter. This is for the benefit of any search engine that randomly pulls one topic over others. Feel free to ignore duplicates and/or the original if you wish but voicing my observations is somehow more important than I care to explain further.]
All remarks in quotations are taken from the online article:
http://www.nytimes.com/2012/07/18/health/research/multiple-sclerosis-drug-doesnt-stop-disability-study-finds.html
The GOOD NEWS:
(FYI: Some of this was easy to miss. News reports sometimes have a way of making good news sound bad. Besides, most of this good news didn’t make it into the lead paragraph or two…. or six. You had to go pretty deep.)
1.) CONFIRMATION was given that interferon beta DOES help reduce the development of brain lesions and DOES limit the frequency of MS relapses.
There you go. All is not lost.
2.) Helen Tremlett, PhD, study report author and associate professor of neurology at the University of British Columbia, “cautioned against” a fear I’ve seen expressed here in our own MS community forum.
She asked people to remember that interferon beta is NOT useless. Did anyone else notice that?
Personally, I don’t believe ANY of the disease modifying drugs are useless and see no reason to stop taking the only drugs we have that offer a sliver of hope for diminishing disease presence.
3.) I was pleased to read Dr. Tremlett’s comments affirming, “These drugs were licensed because they reduce relapse and have a better outcome with lesions. That has not changed.”
See? She thinks so too :)
4.) Following a disclaimer type listing of study limitations the article eased toward its end with this statement, “But after controlling for sex, age at onset, disease duration, relapse rate and other factors, they could find no association between taking interferon beta and any reduction in progression to disability.”
To which Dr. Tremlett remarks, “Relapses and brain lesions do not, apparently, drive disability.”
Ahhh, what did she say???
Wondering why I consider this good news?
Read it again please.
She said, RELAPSES AND BRAIN LESIONS DO NOT, APPARENTLY, DRIVE DISABILITY!
I consider that to be a HUGE statement. I hadn’t thought there was an expert who would CONSIDER such a thing let alone say it OUT LOUD!
MANY of us little people (the ones living with MS) have asked again and again for an explanation of WHY we experience new symptoms in the absence of new lesions. It seems someone other than us has FINALLY asked our question. If so, perhaps a new chapter in the search for answers AND solutions can be opened. And maybe, just maybe some of the lesion counting can be stopped.
At a minimum, that qualifies as potential good news.
5.) The very last paragraph makes the boldest good news proclamation of all (even though I’d guess the reporter never realized it). The entire content is contained in three sentences so I’ll quote it in full.
“There may be other processes at work,” she [Dr. Tremlett] added. “In an ideal world, we want drugs that target whatever is driving long-term disability. We need other drugs aiming at other targets in the brain.”
Other processes Dr. Tremlett? Other drugs with other targets? Like DMD twins maybe? DMD-1 to modify disease and DMD-2 to modify disability? Ohhhh, I like it. Here’s to a future of help and hope for the younger-than-me generation of PwMS.
The BAD NEWS:
(AKA: Facts that sometimes take on a big, bad life of their own when stated in isolation.)
1.) This study concluded that PwMS “who took interferon beta were no less likely to suffer long-term disability than those who took none.”
Thank you. It’s been suspected and suggested all along. It doesn’t mean PwMS shouldn’t appreciate some freedom from the short-to-moderate-term disability associated with exacerbations.
2.) You can’t have Dr. Tremlett as your MS doctor. She holds a staff position in the Division of Neurology, Department of Medicine, The University of British Columbia with a PhD in Pharmacy and Pharmacology.
3.) I didn’t actually find any certifiable bad news (but I guess that’s good news…).
3. (revised) I can’t pretend I was pleased to see Eeyore type responses attributed to two MS experts who represent major university affiliated hospitals here in the good old U.S.A.
In the end, I AM REMINDED that:
1.) When the media presents MS research reports (anything, actually) they seem to enjoy painting a dark and ugly picture of the disease. In truth, MS isn’t a very attractive disease (if such a thing exists). But after the initial fear and some time to adjust, living on the inside of the diagnosis usually isn’t quite as bleak as those on the outside seem to imagine.
I’m glad that after using long ugly brushstrokes to create a dark word picture, NYT writer Nicholas Bakalar chose to attach a disclaimer that “many people live with the disease for decades, still able to walk and work with minimal disability.” Well then, maybe we will be okay after all - WITH or WITHOUT so much immediate worry about the long-term.
2.) The reported findings don’t change much of anything for those of us presently living in the trenches. In fact, I heard similar arguments leveled against my own DMD of choice (Copaxone) before I ever started using it to replace the money in my pockets. Hadn’t I read the company’s printed insert?! Didn’t I know ‘they’ had admitted ‘in their own words’ that there was no ‘proof’ Copaxone could stop or delay disability progression?!
Maybe it’s true (even if I never did find it in print). It just wasn’t enough to stop me from trying Copaxone then. And now, nothing is convincing me I’d be better off giving it up. I hope others aren’t going to give up either.
3.) I’m okay accepting a risk of long-term disability that equals the risk of PwMS who don’t take advantage of disease modifiers. Why? Because impacting long-term ability would be great but a less-than-perfect possibility is still far better than hopeless.
I’m willing to ‘settle’ for reaping the benefits of having my MS served up with fewer unpredictable and ill-timed flares. It’s a lot better than the choices we had a decade or two ago. Call me crazy but I choose to avoid the rigors and lost time even ONE additional flare will demand in exchange for a bid to (maybe) return to baseline.
Well, that and I’m secretly hoping to gain a little extra…. ah, something. Something as yet unproven - perhaps even unsuspected - by researchers…. or reporters.
~~~~~~~~~~~~~~~~~
[That’s my take. It is my intention to post this in multiple threads containing statements of concern about the matter. This is for the benefit of any search engine that randomly pulls one topic over others. Feel free to ignore duplicates and/or the original if you wish but voicing my observations is somehow more important than I care to explain further.]
Regarding your question about stopping Avonex and relapsing a few days later , I found this information in the drug monograph( scientific explanation of a drug). It has a half -life of 10 hours ,meaning for every 10 hours half of the dose you took decreases so it would be about 5 days before it should be non effective in your body. However, the article below (the monograph) states levels of interlukin 10 were in the cerebrospinal fluid for 48 hours after an Im injection so in my eyes this counteracts the 10 hour half-life and leads me to believe Avonex's effects last longer than a week , just not at therapuetic levels.
From the monograph;http://www.avonex.com/pdfs/pi-powder.pdf
"The specific interferon-induced proteins and mechanisms by which AVONEX® exerts its effects in multiple sclerosis have not been fully defined. Clinical studies conducted in multiple sclerosis patients showed that interleukin 10 (IL-10) levels in cerebrospinal fluid were increased in patients treated with AVONEX® compared to placebo. Serum IL-10 levels were increased 48 hours after intramuscular (IM) injection of AVONEX® and remained elevated for 1 week. However, no relationship has been established between absolute levels of IL-10 and clinical outcome in multiple sclerosis."
So, in answer to your question, I think you were headed for a relapse and stopping the Avonex MAY have caused the relapse sooner. Just my opinion.
Ren
Hey tingle-t,
So nice to see you. Great analysis of course. My problem is why the study was big, stated findings were based on data, they did not cite their limitations, ages, years since diagnosis and so much more.
While all are free to draw their own conclusions, make, or not make decisions based on this finding, it's useless if not compared to existing data from other studies. Especially so since that was their means.
My view - Reporting of this study has done a terrific job however of creating doubt, fear and disappointment.
MMMMMMMMM lunch sounds fab! If MH ever throws a party, I vote for Tingle-T to design the menu!
So nice to see you. Great analysis of course. My problem is why the study was big, stated findings were based on data, they did not cite their limitations, ages, years since diagnosis and so much more.
While all are free to draw their own conclusions, make, or not make decisions based on this finding, it's useless if not compared to existing data from other studies. Especially so since that was their means.
My view - Reporting of this study has done a terrific job however of creating doubt, fear and disappointment.
MMMMMMMMM lunch sounds fab! If MH ever throws a party, I vote for Tingle-T to design the menu!
Hey Shelly,
For me the sobering piece about MS is in the opening paragraph describing our disease:
MULTIPLE SCLEROSIS (MS) IS A CHRONIC DISEASE of unknown etiology...The majority of—but not all—patients with MS develop severe disability 10 to 20 years after diagnosis.
Yikes, that means I should expect to have severe disability by the age of 56 or at best 66 years! That is one heck of a motivator for me to change my life to see if I can affect the course of this disease and stay relatively disability free at level 3 out of 10.
I am very happy to take my daily injection of Copaxone knowing that it is proven to reduce relapses by 30% and therefore save me some pain over the course of the disease. However, I have never seen any research that I felt comfortable with to claim that their drug was going to stop the progression of disability.
The study is huge following 868 people with MS treated with interferons over time, and comparing them with 829 untreated people from the same time period and 959 untreated people from an earlier period. It found that there was no difference in the time taken to require a cane to walk 100m for people treated with interferon compared to those not treated.
I don't believe that this gives any of us reason to throw away our expensive DMD as they will stop a percentage of relapses. To stop disability progression I choose the natural approach as proven by the work of Prof Swank (discredited by medical profession) and Prof Jelinek (five year study discredited in various MS forums)
Today, I made a lunch for 11 people of roasted pumpkin, grilled salmon, blanched asparagus and then drizzled over a zesty parsely relish containing lime, capers, anchovies(the secret ingredient) and a bit of extra virgin olive oil. Everyone raved about the lunch. I said proudly 'yes it's all part of my gluten free vegan plus seafood diet'.They couldn't believe being healthy could taste so delicious.
Food for thought
A
For me the sobering piece about MS is in the opening paragraph describing our disease:
MULTIPLE SCLEROSIS (MS) IS A CHRONIC DISEASE of unknown etiology...The majority of—but not all—patients with MS develop severe disability 10 to 20 years after diagnosis.
Yikes, that means I should expect to have severe disability by the age of 56 or at best 66 years! That is one heck of a motivator for me to change my life to see if I can affect the course of this disease and stay relatively disability free at level 3 out of 10.
I am very happy to take my daily injection of Copaxone knowing that it is proven to reduce relapses by 30% and therefore save me some pain over the course of the disease. However, I have never seen any research that I felt comfortable with to claim that their drug was going to stop the progression of disability.
The study is huge following 868 people with MS treated with interferons over time, and comparing them with 829 untreated people from the same time period and 959 untreated people from an earlier period. It found that there was no difference in the time taken to require a cane to walk 100m for people treated with interferon compared to those not treated.
I don't believe that this gives any of us reason to throw away our expensive DMD as they will stop a percentage of relapses. To stop disability progression I choose the natural approach as proven by the work of Prof Swank (discredited by medical profession) and Prof Jelinek (five year study discredited in various MS forums)
Today, I made a lunch for 11 people of roasted pumpkin, grilled salmon, blanched asparagus and then drizzled over a zesty parsely relish containing lime, capers, anchovies(the secret ingredient) and a bit of extra virgin olive oil. Everyone raved about the lunch. I said proudly 'yes it's all part of my gluten free vegan plus seafood diet'.They couldn't believe being healthy could taste so delicious.
Food for thought
A
Hi Tammy, not uneducated at all, Jense says maybe and my thought isvery possible, but moreso because of the drop of disease modifier.
Soon as you stop, the levels of medicine that built up drop off. So, if the med was successful in modifying your MS, then the drop could have left you more vulnerable.
That is not to say you wouldn't have relapsed anyway, just that it was a strong coincidence and evidence you relapsed soon after the drop. Something that should weigh heavily where change in meds and stoppage is concerned between you and your doc.
Soon as you stop, the levels of medicine that built up drop off. So, if the med was successful in modifying your MS, then the drop could have left you more vulnerable.
That is not to say you wouldn't have relapsed anyway, just that it was a strong coincidence and evidence you relapsed soon after the drop. Something that should weigh heavily where change in meds and stoppage is concerned between you and your doc.
I think the official answer is 'maybe!' Nobody ever seems to know. I had a blood clot a week after discontinuing Copaxone and starting Betaseron. I've also tested positive in the past for lupus anticoagulant, which is one of the markers for anti-phospholipase syndrome, a common clotting disorder with MS patients. (It's very uncommon, but more common among people with MS - if that makes any sense.)
What you say makes sense. None of us are going to experience MS the same way- so we shouldn't expect our disease modifiers to react the same way within us. I hope my neuro puts me on "something" when I see him next week.
By the way, (and I know this will sound uneducated)- I had a relapse just a few days after being taken off Avonex. That wouldn't have caused this relapse would it? (I know this is a dumb question, but I am curious to get additional viewpoints.)
Tammy
By the way, (and I know this will sound uneducated)- I had a relapse just a few days after being taken off Avonex. That wouldn't have caused this relapse would it? (I know this is a dumb question, but I am curious to get additional viewpoints.)
Tammy
Nope your not allowed off! lol
I'm up here with you!!!!
data schmata - measure the person, and their CNS
I'm up here with you!!!!
data schmata - measure the person, and their CNS
I should clarify -
I get angy, not at MSers, or anyone here, but at the headlines that were chosen and the subsequent write-ups, and the specifically hand plucked paragraphs of the study, that completely excluded positive past results from comprehensive "patient" studies on the impact of interferon on MS,
All this media is also very absent of additional information found in the study.
-Shell
I get angy, not at MSers, or anyone here, but at the headlines that were chosen and the subsequent write-ups, and the specifically hand plucked paragraphs of the study, that completely excluded positive past results from comprehensive "patient" studies on the impact of interferon on MS,
All this media is also very absent of additional information found in the study.
-Shell
The more people that get discouraged by this "one" study that was completed by analyzing "data" the angrier I get because they are an important tool in our arsenal to battle MS.
Don't quit your meds. They can, and do work. Each of them individually not for all, of course. But, at least some-for-some. Which is far better than none.
More to come on this.
Don't quit your meds. They can, and do work. Each of them individually not for all, of course. But, at least some-for-some. Which is far better than none.
More to come on this.
COMMUNITY LEADER
So far none of this has hit our news, anyway you look at it, its a pain if its realistic and a pain if its fuzzy research (BS). I sort of think i could be a good example of what can happen if you dont take the DMD opportunity. I spent the majoriety of my life unaware of MS, and by the time i became aware, i was walking like a string puppet, double vision etc etc and basically too late for a DMD to realistically do me any good.
I am sooooo not a gambler, but i'd of taken the chance of a different out come and even though i'll probably never go on a DMD now, I am still a believer that DMD's are better than nothing! From my perspective what is recordable in 3 years is irrelivant, it can totally change with the next relapse or the next, thats a ?! just gone, there is no predictability so how can there be any believable time comparrison if we are unique?
Interesting and frustrating..............JJ
I am sooooo not a gambler, but i'd of taken the chance of a different out come and even though i'll probably never go on a DMD now, I am still a believer that DMD's are better than nothing! From my perspective what is recordable in 3 years is irrelivant, it can totally change with the next relapse or the next, thats a ?! just gone, there is no predictability so how can there be any believable time comparrison if we are unique?
Interesting and frustrating..............JJ
Well stated, Shelly!
One place I refer to often is the Multiple Sclerosis Research blog from Bart's and the London. These guys constantly have their ear to the ground, and separate the good research from the BS.
One place I refer to often is the Multiple Sclerosis Research blog from Bart's and the London. These guys constantly have their ear to the ground, and separate the good research from the BS.
Hi, you..... that is quite a post. We are hearing the same thing on our Canadian news. It actually showed up just yesterday about the interferon/betaferon.... and how they can make us worse instead of the good that they were supposed to do.
I really appreciate all the work the you put into your posts, and how informative they are.
Thanks Shell, and hope you are ok...
love ya,
Candy
I really appreciate all the work the you put into your posts, and how informative they are.
Thanks Shell, and hope you are ok...
love ya,
Candy
Ah, I apologize - hadn't seen the earlier thread about this article. My comment still stands - I'm progressing without relapses, so the main reason to take Betaseron for me would be to slow down the invisible damage.
There's an article in the NYTimes that has a better story about the study, and how many participants were in it.
"Researchers at the University of British Columbia prospectively collected data on 868 M.S. patients treated with interferon beta, comparing them with 1,788 patients who never took the drug. Using a well-validated scale, they found that those who took interferon beta were no less likely to suffer long-term disability than those who took none. "
http://www.nytimes.com/2012/07/18/health/research/multiple-sclerosis-drug-doesnt-stop-disability-study-finds.html
++++++++++++++++
The problem I have with DMD efficacy being measured by lesions and relapses is that I don't have a lot of lesions, and I haven't had a relapse in three years. I'm bad about taking my Betaseron, and after the first three years on Copaxone, I was bad about that too. So I can't really claim that the drugs have or haven't helped my progression or increasing disability. What I have noticed is that I gradually progress, without relapses.
What I personally need to do is check with my neurologist about brain atrophy. Since I'm not relapsing, I might be having some atrophy. It's been a while since my last MRI, so it's something to think about.
"Researchers at the University of British Columbia prospectively collected data on 868 M.S. patients treated with interferon beta, comparing them with 1,788 patients who never took the drug. Using a well-validated scale, they found that those who took interferon beta were no less likely to suffer long-term disability than those who took none. "
http://www.nytimes.com/2012/07/18/health/research/multiple-sclerosis-drug-doesnt-stop-disability-study-finds.html
++++++++++++++++
The problem I have with DMD efficacy being measured by lesions and relapses is that I don't have a lot of lesions, and I haven't had a relapse in three years. I'm bad about taking my Betaseron, and after the first three years on Copaxone, I was bad about that too. So I can't really claim that the drugs have or haven't helped my progression or increasing disability. What I have noticed is that I gradually progress, without relapses.
What I personally need to do is check with my neurologist about brain atrophy. Since I'm not relapsing, I might be having some atrophy. It's been a while since my last MRI, so it's something to think about.
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Shell -
I read the article and had more questions too... explain patients taking interferon.... how long did they have MS before starting? What were their physical conditions at time of first injection? Were they on another med before? What are the ages of all the patients? When did those 3 years end, what time of the year? If you had asked me in March or April, I was doing great, minimal issues from the existing lesions and damage; but today, add 95 degrees and 100% humidity and I'm pretty much a puddle of mud!!! But my MRIs tell a better story then I present today.... so does that mean my disability has increased or is it just where it always was and the symptoms of that disability is kicking my butt because its summer in the Mid-Atlantic!
I don't think its fair to compare a 45 year old on interferon for 3 years after being newly diagnosed to 55 year old who did not start interferon until 7 years after their diagnosis....
And honestly, isn't this article really just telling us what we all really knew already... nothing stops MS... its just to delay the progress.
Okay, done rambling... would someone please help me down off the soapbox???
Jen