Statistics on the "usual" course for RRMS?

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Statistics on the "usual" course for RRMS?

Postby Cholderby » Tue Mar 26, 2013 9:10 am

I realize that there's almost no point to figuring out a usual course with ms. However :) here's why I'm looking...

My best friend's husband also has ms. He was diagnosed in 2006. He only had the one MRI in 06 and never any since and did not get a second opinion. He has been on coaxpone since then and never had a second exacerbation.

Everyone I know assumes that I will have the same experience. I have no data to support this, but I assume this is unusual.

I certainly don't want to get ms-ier than thou but I have wondered if his neuro handed him the right diagnosis, especially since common tests like Lyme and b12 deficiency were never run. Or maybe he is a copaxone success.

Anyone have any data that might put his and my experience in context?

Thx!
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Re: Statistics on the "usual" course for RRMS?

Postby jimmylegs » Tue Mar 26, 2013 11:47 am

i think ms is overdiagnosed in general and (if this makes sense) that the diagnostics are far too coarse-grained.

that said, i'd have to know a LOT more about your friend's hubby's case to be able to form any amateur conjecture.
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Re: Statistics on the "usual" course for RRMS?

Postby want2bike » Tue Mar 26, 2013 1:13 pm

Here is a site which tells what others have experienced with Copaxone. See what others have to say about the drug.

http://www.askapatient.com/viewrating.a ... PerPage=60
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Re: Statistics on the "usual" course for RRMS?

Postby dawn446 » Tue Mar 26, 2013 3:26 pm

I've been on Copaxone since 2000. My last relapse was in 2007.

I wouldn't assume that someone else's experience of MS is going to be similar to yours just becus of the Copaxone.MS is a highly variable disease.
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Re: Statistics on the "usual" course for RRMS?

Postby NHE » Tue Mar 26, 2013 7:09 pm

Cholderby wrote:My best friend's husband also has ms. He was diagnosed in 2006. He only had the one MRI in 06 and never any since and did not get a second opinion. He has been on coaxpone since then and never had a second exacerbation.

Everyone I know assumes that I will have the same experience. I have no data to support this, but I assume this is unusual.

I certainly don't want to get ms-ier than thou but I have wondered if his neuro handed him the right diagnosis, especially since common tests like Lyme and b12 deficiency were never run. Or maybe he is a copaxone success.


It is not uncommon for people early in their diagnosis of MS to go 5 years or more between clinical relapses. I went 8 years between my first symptoms in 1991 and my diagnosis in 1999. Moreover, an MS diagnosis is a process of elimination. Not testing for other common possibilities is simply negligence.

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Re: Statistics on the "usual" course for RRMS?

Postby Cholderby » Wed Mar 27, 2013 4:08 pm

Thank you for making sense out of my word jumble. That's the kind of stuff I wanted to know!
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Re: Statistics on the "usual" course for RRMS?

Postby Cece » Thu Mar 28, 2013 7:46 am

Here's a useful chart:
http://4.bp.blogspot.com/-Xz2Lll04ZG0/U ... ulator.JPG

If your friend is seven years from diagnosis with an estimated EDSS of 1, he's in line with about 25% of the MS population. 75% are doing worse than that.
You can look at your own years from diagnosis and EDSS level and see if you're doing better or worse than average.

The chart comes from this blog post written by UK neurologists: http://multiple-sclerosis-research.blog ... ained.html
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Re: Statistics on the "usual" course for RRMS?

Postby Cholderby » Fri Mar 29, 2013 4:04 pm

Perfect! Thanks!
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Re: Statistics on the "usual" course for RRMS?

Postby HarryZ » Sat Mar 30, 2013 12:34 pm

Copaxone was one of the first 4 approved MS drugs that failed in its first attempt to reach statistical significance in its trials. More trials and a lot of data manipulation finally got it approved...barely. Had it not been promised Orphan Drug Status at the time, I doubt Teva would have continued to press for approval.

With MS being such a variant relapsing and remitting disease, it's hard to tell if any one drug is working. Of course the drug companies that make these drugs will insinuate that using their drug is why you are doing OK....until the next relapse and/or disease progression.
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Re: Statistics on the "usual" course for RRMS?

Postby Cholderby » Sun Apr 07, 2013 4:47 am

Yes! As a newbie, I was shocked to find in the drug propaganda, buried amidst the pictures of women hiking up mountains and doing yoga, that they promise a "29% reduction in relapses". I kept thinking that I want a little more ROI on a daily injection. And those are the results of THEIR studies.

I am happy there's something. I just wish it was better! :confused:
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Re: Statistics on the "usual" course for RRMS?

Postby HarryZ » Sun Apr 07, 2013 9:44 am

Cholderby wrote:Yes! As a newbie, I was shocked to find in the drug propaganda, buried amidst the pictures of women hiking up mountains and doing yoga, that they promise a "29% reduction in relapses". I kept thinking that I want a little more ROI on a daily injection. And those are the results of THEIR studies.

I am happy there's something. I just wish it was better! :confused:


All of the drug companies that market their MS wonder drugs have been slapped on the hands at one time or another by the FDA because of their misleading and false advertising when it comes to these medications.

So they advertise that you will get a 29% reduction in relapses. So if you get 2 relapses a year, this means you'll end up with about 1.3 relapses for the year after spending over $ 30,000 and suffering from a variety of side effects. What was that you said about a poor ROI?!

Hmmm.

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Re: Statistics on the "usual" course for RRMS?

Postby centenarian100 » Mon Apr 15, 2013 2:47 pm

HarryZ wrote:All of the drug companies that market their MS wonder drugs have been slapped on the hands at one time or another by the FDA because of their misleading and false advertising when it comes to these medications.

So they advertise that you will get a 29% reduction in relapses. So if you get 2 relapses a year, this means you'll end up with about 1.3 relapses for the year after spending over $ 30,000 and suffering from a variety of side effects. What was that you said about a poor ROI?!

Hmmm.

Harry


haha. good point. The drug companies are just like any other corporation. Their primary goal is to make money-a lot of it.
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Re: Statistics on the "usual" course for RRMS?

Postby centenarian100 » Mon Apr 15, 2013 3:03 pm

Cholderby wrote:Anyone have any data that might put his and my experience in context?


Of course, there is no "usual" course for RRMS, but here are some statistics.

(sources varied)

mean time from disease onset to requiring an assist device for gait (i.e. cane) or worse: 27.9 years (15 years per a different study: http://www.ncbi.nlm.nih.gov/pubmed/8017890)
Risk of conversion from RRMS to SPMS: 50% at 10 years and 90% at 25 years
Risk of RRMS after CIS (clinically isolated syndrome): 50% at 2 years and 82% at 20 years (http://www.sciencedirect.com/science/ar ... 3608616207)
MS reduces life expectancy by 5-10 years
50% lifetime risk of depression in MS
% of patients with EDSS < 3 at 15 years: 33.6%
% of patients with EDSS < 3 at 25 years: 14% (http://www.mult-sclerosis.org/msprognosis.html)


"Early age at onset, female sex, relapsing-remitting course at onset, and perhaps optic neuritis or sensory symptoms at onset and relatively few attacks in the first two years are associated with a favorable course." - http://www.ncbi.nlm.nih.gov/pubmed/8017890

A lot of MS patients are doing well. Just go to any MS walk event and start talking to people.
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