rr vs spms and ppms

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rr vs spms and ppms

Postby robbie » Sun Apr 13, 2008 5:31 am

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.
Had ms for over 19 years now.
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Postby Frank » Sun Apr 13, 2008 6:49 am

Hi Robbie,

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
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby robbie » Sun Apr 13, 2008 8:51 am

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.
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.
Had ms for over 19 years now.
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Postby Frank » Sun Apr 13, 2008 9:13 am

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.

If you havent already seen there was a very intense discussion
http://www.thisisms.com/ftopict-3707-in ... generation


--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby nenebird » Sun Apr 13, 2008 10:40 am

these are all great questions...


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.
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Re: rr vs spms and ppms

Postby Lyon » Mon Apr 14, 2008 1:27 pm

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Last edited by Lyon on Wed Jun 22, 2011 6:29 pm, edited 1 time in total.
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Postby robbie » Mon Apr 14, 2008 4:06 pm

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
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?
Had ms for over 19 years now.
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Postby Lyon » Mon Apr 14, 2008 7:36 pm

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Postby MrsGeorge » Tue Apr 15, 2008 12:13 am

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!
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Postby g123 » Wed Apr 16, 2008 4:58 am

Lyon wrote: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 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.
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Postby Lyon » Wed Apr 16, 2008 5:43 am

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Postby gwa » Wed Apr 16, 2008 6:21 am

Lyon wrote:
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.

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Postby cheerleader » Wed Apr 16, 2008 8:01 am

Have to agree with gwa- although the facts state the 85% of all Msers are relapsing/remitting (Bob's right on the number) From the MS Society-

http://www.nationalmssociety.org/living ... index.aspx

....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
Last edited by cheerleader on Wed Apr 16, 2008 8:05 am, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Wed Apr 16, 2008 8:04 am

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Postby Lyon » Wed Apr 16, 2008 10:21 am

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