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Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Sun Apr 13, 2008 7:31 am Post subject: rr vs spms and ppms
I am thinking of the saying no question is to stupid to ask here anyway!
-I know the difference on how they happen rr coming and going spms being more constant but milder than ppms but what is the actually difference?
-How do they change from one to another?
-Is it still the immune system doing the damage in all these forms of ms or does it change when your ms changes to something new? Is it something other than the immune system at work when you have spms or ppms?
-Drugs that replace or re-boot the immune system must work on all of these forms of ms the only difference being some with spms and ppms have more permanent damage and don’t recover as well but the action of the drug even though they only seem to do it for rr must be the same. So even though it’s not said drugs like Campath and Revimmune would work just as well on spms or ppms, they have to right! get rid of the faulty immune system and no more damage regardless of the ms type.
-When someone is taking one of the crabs why will the ms eventually continue is it only because your body develops anti-bodies to your particular drug or do the ms just find a way to get stronger and overpower the drug, what happens?
-Why do these drugs only work 33% of the time. Do the other 7 out of 10 people have a different ms?
MS attacks the myelin, sounds so simple but it must be always changing. _________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
basicly the questions you ask are not stupid at all, actually to most of them there is no clear answer. Anyway I try give some comments.
The underlying dissease mechanism of either (RR, SP, PP) MS form is not really understood.
It can not be generally said that PPMS is more severe than SPMS.
Though it seems that RRMS is dominated by inflamatory symptoms whereas SPMS and PPMS are regarded to be essentially a neurodegenerative(ND) disseases.
But it has been proven that ND is also present in the RR phase from the very beginning.
The "change" from RR to SP might just be that the inflamation does not occure anymore.
PPMS might actually be a SPMS where the RRMS phase has not been correctly recognised because the lesions occued in brain regions that do not controle crucial systems like vision or motor functions.
Studies with Campath in SPMS showed that the disabiltiy continued to increase after the drug had been given.
So one might come to think that there are two sepreate mechanisms in MS.
It might also be (that is tested in current studies) that radical anti-inflamatory intervention (eg Campath) in the RRMS phase inhibits the progression to the SPMS phase.
Antibodies especially occure in interferon-beta drugs (they dont seem to be relevant in Copaxone) but I have at least seen one study that showed that they do not have a limiting effect to the therapy goals.
Recent studies point out that patients with a certain genetic profile can expect a better outcome on INF.
It might also be that MS is a heterogenous dissease with different underlying mechanisms so that in some forms of MS the CRABs do work
in others they dont.
In the 90s Lassmann et al discovered that there are four different types of leseons which might indicate that there are also four different types of MS.
--Frank _________________ Current regime: Tysabri restarted 05/2008 after LDN, ABX Wheldon Regime for 1 year, interested in T-Cell vaccination, helminth immunomodulation
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Sun Apr 13, 2008 10:51 am Post subject:
Thanks for the reply Frank So completely re-booting the immune system and progression still occurs would mean that it’s not only the immune system doing the damage it must be something else also. Fix a flat tire and it’s not flat anymore but maybe now it’s just a slow leak.
Quote:
Studies with Campath in SPMS showed that the disabiltiy continued to increase after the drug had been given.
So one might come to think that there are two sepreate mechanisms in MS.
_________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
It might also be that the early inflamatory phase substantially damages parts of the nervous system (like axons, astrocytes, neurons, mylin) so that a secondary reaction is triggered that runs independent of the immune systems attacks.
That would be another explanation why in SPMS rebooting of the immunesystem ist not sufficient.
I have been recently diagnosed with PPMS. Of course I have been researching and reading like a fiend to figure out exactly what does that mean. Many think PPMS is a different disease? What the ???
One suggestion, how bout sending your questions to the various MS organizations and asking for clarification.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Mon Apr 14, 2008 3:27 pm Post subject: Re: rr vs spms and ppms
Those are simple questions and not stupid questions robbie.
Finding correct answers to the simple questions is the most important factor in MS research. So far research has failed miserably and that's why MS research can't make headway. If you can't figure out the answer to 2+2 it's insane to think you're ready for calculus, but that's the history of "progress" in MS research and that's why MS has always been so mysterious.
robbie wrote:
-I know the difference on how they happen rr coming and going spms being more constant but milder than ppms but what is the actually difference?
PPMS is the exact same thing as SPMS except PPMS isn't preceeded by (noticeable) RRMS. Did you mean to say RRMS rather than PPMS?
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Jan 28, 2005 Posts: 735 Location: Northern Ontario, Canada
Posted: Mon Apr 14, 2008 6:06 pm Post subject:
yes bob- and if what you say is true then i must have ppms because i had no attacks other than one case of ON, i don't really care what type it is at this point. thx for the reply
Quote:
PPMS is the exact same thing as SPMS except PPMS isn't preceeded by (noticeable) RRMS. Did you mean to say RRMS rather than PPMS?
_________________ ~i guess i know i just hate how it sounds~
I see seven towers
But I only see one way out
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Mon Apr 14, 2008 9:36 pm Post subject:
robbie wrote:
i don't really care what type it is at this point.
You've got the right outlook robbie. The name we give it doesn't matter, what you're dealing with remains the same.
I'm still convinced that the situation is a lot better for SPMS and PPMS than we are led to believe, but I'm really starting to realize how little value that is to people with SPMS and PPMS.
You can't blame the drug companies, but because RRMS is 85% of the MS market, RRMS is what they are going to spend their clinical trial dollars on. Despite their convictions that some of these treatments will work on SPMS and PPMS, the small markets don't make it worth accepting any risks with the trial results.
I don't like it, but I can't blame the drug company administrators. The stock holders would rightly have their ass for taking unjustified risks. I think there are treatments in trial right now that will work (stop the disease process) for SPMS and PPMS, but I can't guess how long it will be before people with SPMS and PPMS are going to get word of it, much less be provided convincing evidence.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Last edited by Lyon on Tue Apr 15, 2008 12:59 pm; edited 1 time in total
Thanks for asking these questions Robbie - I am still in a place where I know very little & I wouldn't have known to ask some of them! I found this helpful!
You can't blame the drug companies, but because RRMS is 85% of the MS market, RRMS is what they are going to spend their clinical trial dollars on. Despite their convictions that some of these treatments will work on SPMS and PPMS, the small markets don't make it worth accepting any risks with the trial results.
Bob
RRMS is 85% of the MS market? that surprises me because i always hear that something like 90% of people with RRMS turn to SP eventually, 50% after 10 years.
If the average onset age is 30's, and average life expectancy is close to normal, you'd think almost half of the potential market would be SPMS. Add PPMS to that...
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Wed Apr 16, 2008 7:43 am Post subject:
g123 wrote:
RRMS is 85% of the MS market? that surprises me because i always hear that something like 90% of people with RRMS turn to SP eventually, 50% after 10 years.
If the average onset age is 30's, and average life expectancy is close to normal, you'd think almost half of the potential market would be SPMS. Add PPMS to that...
am i missing something?
Actually you make a good point and if MS isn't "cured" soon (and I'm convinced it will be before any of this comes into play) the dynamics of the situation will change soon....probably has changed a little since that 85% figure was quoted.
Obviously per capita incidence of MS (and all the autoimmunes/inflammatory diseases) had risen at an alarming rate in the, at that time developing/now developed populations so that the constantly higher influx of new RRMS cases FAR outnumbered the cases of PPMS and past RRMS cases which had gone on to SPMS.
I personally think that in the developed populations MS rates are about as high as they're going to get, although we're going to continue to see slight shifting of percentages as the per capita percentage of minorities cases rise to meet that of whites and, as you mentioned, the percentage of progressive MS rises with time in comparison to RRMS.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
I'm still convinced that the situation is a lot better for SPMS and PPMS than we are led to believe, but I'm really starting to realize how little value that is to people with SPMS and PPMS.
You can't blame the drug companies, but because RRMS is 85% of the MS market, RRMS is what they are going to spend their clinical trial dollars on.
Bob
First, I am not the least bit convinced that the situation is better for SPMS and PPMS than we are led to believe. In fact, there is nothing in the pipeline for those of us with the progressive types of MS, of which I am aware, that will do anything dramatic for us.
As long as the cause of the disease is unknown the treatments being explored are a lot of shots in the dark and all of these shots take years before we know if they are worth a hoot. So far, nothing is looking good to me.
Secondly, I don't know where you get your theory that 85% of the people with MS are RRMS, because I don't believe that figure. The progressive forms are much higher than 15% of total patients.
Thirdly, the pharma companies are spending money on RRMS because they have convinced doctors and patients that they are being helped with these expensive, money making meds. In fact, those helped are in line with what would be expected from a placebo effect, less than 40%.
SPMS people will be more difficult to convince, because we will need to actually be helped and show signs of getting stronger and better. We
are beyond remitting and the meds will either have to stop the progression or make us better. These will be difficult tasks for pharmas without them knowing what the enemy is within the disease.
....it appears that an aging populace and more late dx (like my hubby) are adding up to a larger progressive population. I think the percentage will be readjusted in the coming years.
The more I read, the more I find similarities between MS and other neurodegenerative diseases, rather than with other autoimmune diseases. I'm starting to agree with the position that MS is a continuing degenerative process, marked (in some) with inflammation. The end result is, sadly, pretty much the same.
I think we will see more research groups like the Institute for Neurodegenerative Disease in the UC community-
http://ind.universityofcalifornia.edu/
Researchers looking at the macrocosm, rather than the microcosm.
$.02,
AC _________________ Husband diagnosed RRMS March 2007
pursuing endothelial healing
Copaxone, Swank, supplements, laughter
Last edited by cheerleader on Wed Apr 16, 2008 10:05 am; edited 1 time in total
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Wed Apr 16, 2008 10:04 am Post subject:
Hi gwa,
I should have figured you for a hard sale!!
Seriously, I wish there was obvious reason for people with progressive MS to believe it but I'm not trying to sell the reasons for hope, I was just making note of a conviction of mine.
gwa wrote:
First, I am not the least bit convinced that the situation is better for SPMS and PPMS than we are led to believe. In fact, there is nothing in the pipeline for those of us with the progressive types of MS, of which I am aware, that will do anything dramatic for us.
THAT is EXACTLY the point I'm trying to make. While I'd be a fool to say the picture is rosy for those with the progressive forms of MS I will with all certainty say that the picture is better than you are being led to believe and better than researchers believe.
Then again something I have a hard time keeping in mind is "what are the expectations of someone with progressive MS compared to mine?". I'm ONLY referring to stopping the disease progress, stopping progression of disability and only having the body's ability to heal itself in regards to improvement of disability. My optimism disappears when it comes to our being able to actively aid remyelination/axonation substantially in the near future.
gwa wrote:
As long as the cause of the disease is unknown the treatments being explored are a lot of shots in the dark and all of these shots take years before we know if they are worth a hoot. So far, nothing is looking good to me.
I can see why you and most people feel that way and there is interesting evidence to the contrary but there isn't conclusive evidence to the contrary so I can't make a good argument against that view. I'd say that common sense is against it, but you'd make me prove it and that would force me to write an epic that no one would ever read!
gwa wrote:
Secondly, I don't know where you get your theory that 85% of the people with MS are RRMS, because I don't believe that figure. The progressive forms are much higher than 15% of total patients.
I neither agree nor disagree with their figures but 85% RRMS rate has been the standard during my 2 1/2 year obsession. Almost any site quotes that percentage but obviously they get that figure from the NMSS http://tinyurl.com/6gojm9
gwa wrote:
Thirdly, the pharma companies are spending money on RRMS because they have convinced doctors and patients that they are being helped with these expensive, money making meds. In fact, those helped are in line with what would be expected from a placebo effect, less than 40%.
I agree, except I usually call it "a little over 30%"
gwa wrote:
SPMS people will be more difficult to convince, because we will need to actually be helped and show signs of getting stronger and better.
Again, I can't speak to getting stronger and better, only not getting worse. Even though the signs are out there, they aren't obvious and I contend that MS researchers are barking up the wrong tree regarding SPMS and PPMS being horses of a different color. Hopefully the fallibility of MS researchers isn't going to come as a big surprise to anyone!
gwa wrote:
We are beyond remitting and the meds will either have to stop the progression or make us better. These will be difficult tasks for pharmas without them knowing what the enemy is within the disease.
THAT is exactly the BS I hope you will soon have reason to believe is BS based on researcher misconception.
Dig into the history of MS research and MAYBE you and I together can come up with a number of times researchers have misled themselves during that history......only to eventually find that the "improved version" was also wrong....again and again and again.
Obviously MS research can't depend only on common sense, but common sense has to be brought back into the picture from when it became taboo in the early 1950's.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: May 04, 2006 Posts: 3372 Location: Mid-Michigan
Posted: Wed Apr 16, 2008 12:21 pm Post subject:
[quote="Lyon"]Hi gwa,
I should have figured you for a hard sale!!
Seriously, I wish there was obvious reason for people with progressive MS to believe it but I'm not trying to sell the reasons for hope, I was just making note of a conviction of mine.
gwa wrote:
First, I am not the least bit convinced that the situation is better for SPMS and PPMS than we are led to believe. In fact, there is nothing in the pipeline for those of us with the progressive types of MS, of which I am aware, that will do anything dramatic for us.
THAT is EXACTLY the point I'm trying to make. While I'd be a fool to say the picture is rosy for those with the progressive forms of MS I will with all certainty say that the picture is better than you are being led to believe and better than researchers believe.
Then again something I have a hard time keeping in mind is "what are the expectations of someone with progressive MS compared to mine?". I'm ONLY referring to stopping the disease progress, stopping progression of disability and only having the body's ability to heal itself in regards to improvement of disability. My optimism disappears when it comes to our being able to actively aid remyelination/axonation substantially in the near future.
gwa wrote:
As long as the cause of the disease is unknown the treatments being explored are a lot of shots in the dark and all of these shots take years before we know if they are worth a hoot. So far, nothing is looking good to me.
I can see why you and most people feel that way and there is interesting evidence to the contrary but there isn't conclusive evidence to the contrary so I can't make a good argument against that view. I'd say that common sense is against it, but you'd make me prove it and that would force me to write an epic that no one would ever read!
gwa wrote:
Secondly, I don't know where you get your theory that 85% of the people with MS are RRMS, because I don't believe that figure. The progressive forms are much higher than 15% of total patients.
I neither agree nor disagree with their figures but 85% RRMS rate has been the standard during my 2 1/2 year obsession. Almost any site quotes that percentage but obviously they get that figure from the NMSS http://tinyurl.com/6gojm9
gwa wrote:
Thirdly, the pharma companies are spending money on RRMS because they have convinced doctors and patients that they are being helped with these expensive, money making meds. In fact, those helped are in line with what would be expected from a placebo effect, less than 40%.
I agree, except I usually call it "a little over 30%"
gwa wrote:
SPMS people will be more difficult to convince, because we will need to actually be helped and show signs of getting stronger and better.
Again, I can't speak to getting stronger and better, only of not getting worse.
Even though the signs are out there which show that PPMS and SPMS are nothing but extensions of RRMS, those signs aren't obvious and researchers have already (wrongly) convinced themselves that SPMS and PPMS turn into some kind of virus from Mars. Hopefully the fallibility of MS researchers isn't going to come as a big surprise to anyone!
gwa wrote:
We are beyond remitting and the meds will either have to stop the progression or make us better. These will be difficult tasks for pharmas without them knowing what the enemy is within the disease.
THAT is exactly the BS I hope you will soon have reason to believe is BS based on researcher misconception.
Dig into the history of MS research and MAYBE you and I together can come up with a number of times researchers have misled themselves during that history......only to eventually find that the "improved version" was also wrong....again and again and again.
Obviously MS research can't depend only on common sense, but common sense has to be brought back into the picture from when it became taboo in the early 1950's.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
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