Definitions

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby HarryZ » Sun Sep 17, 2006 2:48 pm

Bob,

I can certainly relate to the excitement you have at the moment in your current situation. Having been there several years ago I can remember the feelings as if they happened yesterday.

what I find hope in is that the (or at least some) of the researchers have moved from treatments aimed at the symptoms of MS and towards the heart of the immune system which seems directed towards MS more directly and completely but also seems more likely to add benefit for all MS stages.


I can only ask one question here...what if MS's original cause has absolutely nothing to do with the immune system? While we know that the immune system is reacting to inflammation caused when the myelin is being attacked, nobody has yet to find out just why the myelin is getting attacked. If this is the case, then all the heavy duty immune system altering drugs won't be the answer in the long run.

If there is nothing else to be hopeful about it seems to me that researchers are finally on the right track and heading in the right direction.


They have actually been on the immune system track for about 40 years now and it's proving to be an incredibly long track! Perhaps they may have to take one of the detours along the way to get the answer :)

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2320
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Advertisement

ditto

Postby gwa » Sun Sep 17, 2006 3:20 pm

Harry, I agree with your assessment of the road to a cure.

My opthamologist told me 35 years ago that a cure was just around the corner. I have been stung too many times with promises of a treatment that will work to get worked up about much until the real deal shows up somewhere, someday.

None of the other diseases that are speculated to be autoimmune are being effectively treated or cured either.

I do believe that many scientists are trying to help find treatments or cures and am grateful for their perseverance.

gwa
User avatar
gwa
Family Elder
 
Posts: 846
Joined: Thu Dec 01, 2005 4:00 pm

Postby Lyon » Sun Sep 17, 2006 4:36 pm

oo
Last edited by Lyon on Sat May 07, 2011 9:22 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby mrhodes40 » Sun Sep 17, 2006 5:33 pm

Bob this thread hits a nerve. Well said!
Harry, I also can attest to the "battle fatigue" of hoping for a cure for years and years. It gets really tiresome to get all excited once again, only to find it does not work more than somewhat and at a significant health cost. And I have been on the immune bandwagon for long enough to have come to the conclusion that in fact there is a basic flaw in the model or we'd have better progress than we do. My mother has RA and is severely disabled with obviously grossly deformed joints. She has taken eveery suppressive therapy available for 40 years as it came out as she is aggressively losing the battle

But the comment by GWA
None of the other diseases that are speculated to be autoimmune are being effectively treated or cured either

caught me because I unfortunately have RA as well as MS, and I agree. RA has been, like MS, speculated for decades as an "autoimmune disease". However, unlike MS the inflammation is both very painful and visible as it is in joints and they become hot, swollen and visibly red when the immune system is actively working there. People cannot stand the pain of it so they demand something to stop inflammation, whereas the MS patient is not likely to know they are having lesions occur at all unless thye are in a critical area so are not "demanding' anything most of the time. In RA, anti inflammatories reduce the pain and inflammation effectively, and newer therapies cause immunosuppression aggressive enough to stop the pain and visible "flares" (equivalent to an MS exacerbation) on a long term basis.

HOWEVER..it is KNOWN that in spite of this active reduction in inflammation and immune suppression the joint damage continues under the radar without the red joints pain and easily visible signs of the damage occurring. People gradually become disabled even though seemingly managed well and pain free.
from here <shortened url>
METHODS: In this multicenter prospective followup study, a cohort of 195 patients with early, clinically active RA was randomly assigned to treatment with a combination of methotrexate, sulfasalazine, hydroxychloroquine, and prednisolone or with a single DMARD (initially, sulfasalazine) SNIP-. At 5 years, the corresponding percentages were 28% and 22% (P not significant). The median Larsen radiologic damage scores at baseline, 2 years, and 5 years in the combination-DMARD and single-DMARD groups were 0 and 2 (P = 0.50), 4 and 12 (P = 0.005), and 11 and 24 (P = 0.001), respectively CONCLUSION: Aggressive initial treatment of early RA with the combination of 3 DMARDs for the first 2 years limits the peripheral joint damage for at least 5 years. Our results confirm the earlier concept that triple therapy with combinations of DMARDs contributes to an improved long-term radiologic outcome in patients with early and clinically active RA.

That's a rather technical quote but it essentially says that in RA treatment with *three* suppressing therapies at the same time *limits* damage and improves out comes but note it does not *stop* joint destruction, as the final numbers show. People still had some joint destruction. Since these drugs have significant side effects, this is a high price for this benefit, though in the RA patient reduction of pain improves quality of life today.

The question in RA has become if suppression only limits joint destruction, is it the immune system causing the damage or is there something we are missing?

recently Margaret Hammerschlag MD of the American CDC made this comment
One of the major characteristics of Chlamydia spp. is its ability to cause prolonged, often subclinical infections. Chronic, persistent infection with Chlamydia pneumoniae has been implicated in the pathogenesis of several chronic diseases initially not thought to be infectious, including asthma, arthritis and atherosclerosis.


if these autoimmune diseases are infectious, either bacterial or viral, does this not explain the lack of efficacy in the decades long suppression of immunity? And if one of these diseases is infective not autoimmune, how likely is it that the other so called autoimmune diseases are actually correctly characterized?

In my mind this is the issue and cure of any kind cannot come until we get the cause correctly described. It is clear the suppressing immunity results in SOME benefit if the RA and it's very visible and well studied joint damage as a plausibly good model for how nerve damage happens in MS. I believe this is why we see some improvements in immunosuppressed patients: the damage seconday to the inflammation itself is stopped so the damage over all is slowed down, just as we see in RA joints, but it is not stopped altogether because it is not the cause of the disease. I sincerely hope that soon we see someone stumble onto the right clue that brings this monster down like a house of cards.........

my bias is also that it is probably infective.....JMHO
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby dignan » Sun Sep 17, 2006 5:36 pm

A thought or two about the idea of a cure -- I'm not sure if I believe that a cure has to be: a) a miraculous one-time treatment, like a vaccination, that gets rid of all disease activity (possibly with a second treatment to repair damage), or b) an ongoing treatment that completely halts disease activity as above, but has to be taken regularly.

I almost want to use a "ThisIsMS" efficacy scale to measure whether something is a cure to me -- i.e. if treatment X stops the disease, but requires me do Y and had Z side-effects, would I still want to come to ThisISMS in the hopes of learning about something better on the horizon? I think if a treatment stopped the disease in its tracks, but had to be injected 3 times a day and made me feel fluish all the time, I would still be checking this website hoping to find out about something better, so I would hesitate to call something like that a cure, even though it gets rid of disease activity.

Hopefully this is just a hypothetical situation that will never confront us and the cure will be easy and harmless.
User avatar
dignan
Family Elder
 
Posts: 1610
Joined: Wed Aug 11, 2004 3:00 pm

cures

Postby gwa » Sun Sep 17, 2006 7:33 pm

dignan,

I agree with your description of finding a cure that may be worse than the disease. We will all have to decide what side effects are worth the hassle of getting better or even if we are getting better.

Personally, I am not interested in being "fluish" for the rest of my life and otherwise miserable with knots from shots.

gwa
User avatar
gwa
Family Elder
 
Posts: 846
Joined: Thu Dec 01, 2005 4:00 pm

Postby Lyon » Sun Sep 17, 2006 7:58 pm

oo
Last edited by Lyon on Sat May 07, 2011 9:23 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby HarryZ » Sun Sep 17, 2006 8:47 pm

This should be an interesting addition to the thread.

As I was helping my wife into bed this evening, the small bedroom tv was on with the CTV national news. They were interviewing a patient and I heard the word "Multipe Sclerosis". Needless to say I listened to the remaining story and then posted the website for all of you to read.

It's an oral drug called Fingolimod which targets errant T-cells by trapping them in the lymph system. Here we go again playing with the immune system!! But if this drug ends up with the current Phase II results at the end of Phase III trials, then good-bye CRABs.

Here's the link:

<shortened url>


Harry
User avatar
HarryZ
Family Elder
 
Posts: 2320
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby bromley » Mon Sep 18, 2006 4:59 am

Marie,

Sorry to hear that you have RA in addition to MS. Rituximab has been approved for cases of RA that have not responded to normal treatment options and is currently in trials for PP and RR MS.

http://www.biogen.com/news/BiogenIDECPR_133.htm

Not sure if this would be a treatment option for you, but you could end up killing two birds with one stone!

Ian
User avatar
bromley
Family Elder
 
Posts: 1889
Joined: Fri Sep 10, 2004 3:00 pm

Postby mrhodes40 » Mon Sep 18, 2006 9:47 am

Hey thanks fo the thought Ian, I appreciate it! Yep, I got both the same darn week sick with a high fever and very obvious inability to bend the egs and swollen joints.
but I am not in the immune system camp for either disease. I have had all my own years of disease to watch copaxone effectively reduce lesions-I am told by my neuro my MRI looks better than some first visit patients-but my disability has significantly progressed anyway from being a jogger at 6 years to being cane dependant now, but in addition to that I have watched my mom have effective reduciton of her rheumatoid factors and of the swelling in her joints by the suppressive therapies she has taken for 40 years-while her joints completely have been destroyed . She is utterly crippled.

In my world, suppression simply does not work long term It looks like it helps for a time even a long time, but eventually the destruction happening in spite of no inflammation becomes apparent. To me it seems obvious that there is another process going on. I live for the day that process is identified
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby bromley » Mon Sep 18, 2006 10:12 am

Marie,

You might as well give it a try - you could be our lab rat for Rituxan. You would be doing us a great service and we would all appreciate it. I'm sure we could club together and buy you a box of chocolates. Harry Z could lie in the hospital bed next to when he gets his Tysabri infusion. :)

Ian
User avatar
bromley
Family Elder
 
Posts: 1889
Joined: Fri Sep 10, 2004 3:00 pm

Postby HarryZ » Mon Sep 18, 2006 10:30 am

Harry Z could lie in the hospital bed next to when he gets his Tysabri infusion. :)

Ian


Geez Ian,

Dr. Kervorkian isn't my doctor :D (for those who don't recognize this name, he is the US doctor from Michigan who assisted dozens of terminally ill patients by assisting them in suicide. He was finally convicted and given a long jail term.)

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2320
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

Postby Lyon » Mon Sep 18, 2006 1:45 pm

oo
Last edited by Lyon on Sat May 07, 2011 9:23 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby mrhodes40 » Mon Sep 18, 2006 3:27 pm

I mean that in both the case of arthritis and MS it seems to me that it's not the immune system initiating the attacking. It seems to me that it is likely infective, and the immune system is there to do what it is supposed to do namely, clean up the dead cells and debris from an infection, albeit a slow infection.

IMHO this model neatly explains the lack of real and effective progress in both these diseases. Knock out the immune system and the area looks a little better-there is not inflammation, nothing obvious to see, but on a small scale the infective organism, be it EBV or CPn or MSRV or what have you, is taking over cell by cell. this organism eventually has invaded enough cells that function progressively goes downhill, even though there was no inflammation because inflammation was never the cause of the MS symptoms to begin with It was always the infeciton causing the disease and the immune system merely there to clean up.

I am a nurse and one thing that we have to look out for in the cancer patient who has been treated aggressively with things like cytoxan and other chemotherapeutics that knock out the immune system is colds and flu and other ordinary kinds of germs that might make the chemo patient sick. But here's what you may not know: they do not get sick the same way a person who has a healthy immune system does. They don't have symptoms. they can be deathly ill and have only a mild elevation of temp. Why? because it is not the cold that makes you *feel* sick, it is the immune system reacting to it. Inflammation created by the immune system causes the runny nose and eyes, it causes the goopy chest and etc. It also causes the eventual healing.

SO in my mind this relates to MS and RA by showing that if we knock out the immune system it might make things look better EVEN IF it is an infection although with time the infection would continue to advance the disease without any inflammation or anything being there to see. (Note this would be a slow infection perhaps like HIV that kills in decades not a fast infection like gangrene that kills in days.) It seems to me this is exactly what we see in both diseases; people like my Mom whose RA is "well controlled" with the rheumatoid factor effectively kept low, her pain managed, and inflammation non existant by suppressive strategies still years later progress to the joint loss that was expected in the untreated patient.

It also seems to me that in MS we see the same thing. Many times the trials seem to reduce lesions etc but later people progress. In my own case my MRI's are so clean my doctor says it looks better than some people on their first visit few lesions and not active. I have been on copaxone since it came out. Yet I could jog the year I started copaxone and now I use a cane all the time, in spite of the fact my MRI has only about 4 lesions-the same few I've always had.

The radiologist always says "very slight progression" or "stable" after reading my MRI's Yet would you call going from being able to jog to using a cane full time with drop foot on the right very slight progression or stable??? Of course not.

So it appears to me just based on my personal experiences which are real that inflammation has little to do with MS progression. Since I don't give a jolly *&^% what my MRI looks like and how I function is the ONLY parameter that matters, I'd have to say that in my case reduciton of inflammatin has been a failure.

Raven would say that Campath has seemed to really help his situation as he has done well on Campath after a trial, so I am not saying the model I believe is for everyone BUT IMHO (there's a lot of that in here but you asked so I am happy to share) if a person has tried traditionals and had no good effect, they are smart to try something else
JMHO
marie
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby Lyon » Mon Sep 18, 2006 7:57 pm

oo
Last edited by Lyon on Sat May 07, 2011 9:23 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

PreviousNext

Return to General Discussion

Who is online

Users browsing this forum: No registered users

cron