Effectiveness of MS drugs

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Lyon » Sun Jul 11, 2010 6:16 pm

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Last edited by Lyon on Sun Nov 20, 2011 7:55 pm, edited 1 time in total.
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Postby gothicrosie » Sun Jul 11, 2010 6:27 pm

:D
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Re: You need to read my statement

Postby eric593 » Sun Jul 11, 2010 8:05 pm

MarkW wrote:
Eric593 you need to read my statement "In real clinical situations". You then give data from clinical trials which are not real clinical situations. I don't know if you misread my comment or are just being provocative and giving the 'group think' view ?

Kind regards,
MarkW


What on earth is provocative about my question? I merely asked about the stat you quoted.

I'm still not clear then. Do you have a reference for your statement that in real clinical situations, the meds work on 1/3 of people?

Work how much? Reduce relapses for 1/3 by how much? So, they don't affect MS AT ALL in the rest?

Because if they reduce relapse rate overall by 30%, and if you're saying they work in only 1/3 of people using them, I'm curious how well they work in that 1/3 if, in the ENTIRE population they only reduce 30% of relapses. If they only work in a 1/3 of the people, then 67% of people are not benefitting... at all? So 33% are benefitting quite a bit and their relapse rates are significantly impacted?

Is that what you're saying? Do you have a study or a link to this? Because this is new information for me and I'd like to understand it more clearly.
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Postby patientx » Mon Jul 12, 2010 6:51 am

cheerleader wrote:Dr. Embry's article is a good one

So do you agree then that what you're husband is injecting is
really no different than snake oil.
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Re: You need to read my statement

Postby gothicrosie » Mon Jul 12, 2010 9:00 am

eric593 wrote:
MarkW wrote:
Eric593 you need to read my statement "In real clinical situations". You then give data from clinical trials which are not real clinical situations. I don't know if you misread my comment or are just being provocative and giving the 'group think' view ?

Kind regards,
MarkW


I'm still not clear then. Do you have a reference for your statement that in real clinical situations, the meds work on 1/3 of people?

Work how much? Reduce relapses for 1/3 by how much? So, they don't affect MS AT ALL in the rest?

Because if they reduce relapse rate overall by 30%, and if you're saying they work in only 1/3 of people using them, I'm curious how well they work in that 1/3 if, in the ENTIRE population they only reduce 30% of relapses. If they only work in a 1/3 of the people, then 67% of people are not benefitting... at all? So 33% are benefitting quite a bit and their relapse rates are significantly impacted?

Is that what you're saying? Do you have a study or a link to this? Because this is new information for me and I'd like to understand it more clearly.


I have been digging around and I have been unable to find a study that gives such high numbers. Of course, there are a lot of studies out there and I only have access to the abstracts (if that) since many require a subscription to access them.

I would love to read this research that gives such a great percentage. 30% is pretty high considering most things I have come across have been much less.

Here are some papers I found, none of which give out exact percentages of results, only probability numbers (denoted by the capital italicized P):

Effectiveness of early beta interferon on the first attack after confirmed multiple sclerosis: A comparative cohort study (2007)
http://tiny.cc/ochx2

Reduced effectiveness of long-term interferon-ß treatment on relapses in neutralizing antibody-positive multiple sclerosis patients: a Canadian multiple sclerosis clinic-based study (2007)
http://msj.sagepub.com/cgi/content/abstract/13/9/1127

Treating Relapsing Multiple Sclerosis with Subcutaneous versus Intramuscular Interferon-Beta-1a: Modelling the Clinical and Economic Implications (2009)
http://www.ingentaconnect.com/content/adis/pec/2009/00000027/00000001/art00005

Cost-effectiveness of Four Immunomodulatory Therapies for Relapsing-Remitting Multiple Sclerosis: A Markov Model Based on Long-term Clinical Data (2007)
http://69.0.204.76/data/jmcp/245-61.pdf


Interferon-β Treatment for Multiple Sclerosis (2007)
http://www.neurotherapeutics.org/article/S1933-7213(07)00136-5/abstract

Glatiramer acetate (Copaxone) treatment in relapsing–remitting MS (2000)
http://www.neurology.org/cgi/content/abstract/54/4/813

Comparison of glatiramer acetate (Copaxone®) and interferon β-1b (Betaferon®) in multiple sclerosis patients: an open-label 2-year follow-up (2002)
http://www.jns-journal.com/article/S0022-510X(02)00047-3/abstract

A prospective, open-label treatment trial to compare the effect of IFN β-1a (Avonex), IFNβ-1b (Betaseron), and glatiramer acetate (Copaxone) on the relapse rate in relapsing-remitting multiple sclerosis (2008)
http://www3.interscience.wiley.com/journal/120717445/abstract

HOW EFFECTIVE ARE DISEASE-MODIFYING DRUGS IN DELAYING PROGRESSION IN RELAPSING-ONSET MS (2008)
http://www.neurology.org/cgi/content/citation/71/8/615
***NO information is available on this without purchase…quite annoying if you ask me.
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Clinical Data verses Clinical Trials

Postby MarkW » Tue Jul 13, 2010 2:34 pm

Real clinical data is not found in an individual clinical trial or looking at grouped data from clinical trials. A picture of what happens to patients can be gained from long term trials and these results should be considered against the natural progression of untreated MS.
You are trying to gain an overview not look at the detail, which is hard to do.
My overview tells me that interferons have a positive impact on MS in about one third of people treated over the long term compared with patients receiving no treatment. This also means that two thirds of patients on interferons do no better than untreated patients. The additional problem for pwMS is that there is no test to see if the interferons will help that particlar patient or not. The test is to use the interferon for around 2 years then decide.

Hope this helps some of you understand the bigger picture.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Cece » Tue Jul 13, 2010 2:54 pm

But what to make of the UK health scheme study that showed people on interferons did worse than people untreated?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby ozarkcanoer » Tue Jul 13, 2010 3:27 pm

Plus there is the issue that Stanford reported that the interferons actually work differently in two different classes of MS patients. One class could actually be harmed by interferons. I'm not really sure what to make of the CRABS especially since they don't really know how they work !!!

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Postby eric593 » Tue Jul 13, 2010 3:38 pm

Thanks to Rosie (wow!) and Mark for your info and comments.
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Postby eric593 » Tue Jul 13, 2010 3:45 pm

Cece - since there's no randomization of trial participants equally between 2 groups to remove any other factor besides the med, I might guess that people taking CRAB's might be worse off health wise to begin with than those not taking them or many that were included in a natural history study group that looks at a large diverse group of PwMS.

Maybe those who choose to take the meds are worse off which makes them make the decision to try them to begin with. I know that I didn't go on them myself until I really started to worsen. So when my MS was much better, I refused. Until it got worse and then I went on them to try anything. So I would have biased the results because I wouldn't have been included in the meds group when my MS was much milder.
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Postby Cece » Tue Jul 13, 2010 4:28 pm

Hmm, good point.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby L » Wed Jul 14, 2010 4:27 am

eric593 wrote:Cece - since there's no randomization of trial participants equally between 2 groups to remove any other factor besides the med, I might guess that people taking CRAB's might be worse off health wise to begin with than those not taking them or many that were included in a natural history study group that looks at a large diverse group of PwMS.

Maybe those who choose to take the meds are worse off which makes them make the decision to try them to begin with. I know that I didn't go on them myself until I really started to worsen. So when my MS was much better, I refused. Until it got worse and then I went on them to try anything. So I would have biased the results because I wouldn't have been included in the meds group when my MS was much milder.


They were just seeing if the drugs worked as well in a clinical situation as the manufacturers had led them to believe, it wasn't a trial, there was no control group. http://www.bmj.com/cgi/content/full/340/jun03_1/c1672
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