This Is MS Multiple Sclerosis Community: Knowledge & Support

I had looked for the original study this was a follow up to recently and could not find it so wanted to post it here when I stumbled across this follow up study today:



The really pertinent point that struck me when I read the original study and which stays with me is how LONG it really takes on average for people to progress to these higher scores.

An edss of 3 seems to be kind of key, it can take years to get there but once you do you kind of drop off at a predictable rate.

But notice that on average for regular RRMS it takes 17 years to reach and EDSS of 3 and 24 years to reach a 6.

Ok now I am going to rant a little bit: I had no progression of lesions and no exacerbations the first 6 years of my MS when I was untreated. I was labeled benign, then went on cop when it came out. I could still jog then. I maintained really good inflammation control on Cop but was diagnosed SPMS last year. I have been using a cane off and on since '05 and full time since '07, so that's an edss of 6...at year 14 for me.
While one person can't be representative of everything or everyone's treatment obviously, it is clear that I progressed really quickly for my disease type in spite of good inflammation control. This is what I keep talking about. I am sort of in shock I guess you'd say, I was expected to do very well, better than the natural history of MS.

But here are some questions for the members here:

How many of you had any idea that natural history of MS was like that? Have you not been led to believe if you don't get treatment you'll be severely disabled in a year or two?

What do you think it means for trials of drugs like Campath that have been following people and their lesion loads for 4 years or somthing?

What do you think this means for the Copaxone 10 year study in which less than half the original people remained on the drug, but of those that did roughly 80% were still stable?

Notice that at 20 years after onset 25% still were a 3 or better.

let's discuss!

Look at me with a reply already a follow up to the follow up this lists the numbe rof people on DMD---15%

note this on first saw people in '91. They do not quantify how long people had disease just how severe via edss.

Ok NOW let's discuss

I had practically no disability for 20 years. Over 2 years I progressed to about a 6.5. Over the past 8 months, I've gotten a lot back from Revimmune, but probably still remain at least a 5 at this point. I didn't start copaxone until year 13 of this disease. I continued to progress unrelentingly after switching from 1 DMD to another. Tysabri seemed to work the best, but I had an allergic reaction after 1 dose. So, I would say copaxone was a painful placebo for me.

Sandy

Maybe not PK lots of people did well way out timewise. I would be looking at my options if I was you also, I envy you your edss of 1.

Yes, I see what you mean about the research. I agree they specifically use people that are early disease knowing it will show well.

And I too have been around long enough to have met a few interesting MS cures. One was a woman on a "doctor's" web site we'll say Dr X and he sold vitamins. he had some special expensive blends that used evening primrose oil and things like that which she claimed had totally stabilized her MS. Dr X put her around a lot, but eventually I found a post by her somewhere else she had gotten bad and held it to herself as a secret for a long time but couldn't take it any more so came clean.

This natural history study was amazing to me, note the first cohort was interviewed in 91 before any DMD were out. The follow up at '01 with so few on drugs can hardly be called indicative, but there was no drop in progression rate. I'd like to see a new one on people who've been ON these drugs for the last 10 years, new people so we can compare an olmstead county natural history on DMD and on off them THAT would be interesting.

Copaxone's an easy drug to take I am stil on it because I have rheumatoid and it controls it well for me and it's much milder than what I might take otherwise rheumatically.

Sandy, Wow, 20 years I'm glad revimmune worked for you. you must have had inflammation then? Good news on the edss drop. I did not realize they were treating people so disabled, you went from cane and sometimes bilateral support to walking without a cane? That's great.

The cop 10 year study drive me nuts. Maybe cure-or-bust will come and look at the number on there because he is so good at that , but I'll take a stab

here's the deal they had like 255 people that had been in the first 2 year study that agreed to the extension. After 10 years they had only about 125 people still on the drug, less than half of the original group.

They were able to scrounge up a small number of the drop outs, like 40 or something in that range (all had progressed) and from those people they concluded, stunningly, that if you took copaxone for 10 years you had an 80% chance of being stable ewhere if you stopped it you would lose some lot of edss.

This is absurd as the numbers have to be compared to the total you can't start fracturing out groups like that. The real statistic is more like 39% or so
(255 compred to (80%x125=100)=39%)
that number compares the final number doing well to the total numbe rof people who started out.

to do that I had to make an assumption that those people who dropped copaxone did not think it was helping, or were progressing and probably the majority of them stopped it for that reason. remember they'd all been in the 2 year first trial so the "it hurts" people were already gone...so scientifically to call all the drop outs as if they are "progressed" is not really accurate, but probably likely and thus, assuming all lthe drop outs progressed and moved on for that reason, the real statement should be if you stay on copaxone for 10 years you have a 39% chance of being at the same edss. Considering the natural history study above that is not actually all that impressive.

and that is why you don't want to lose people to follow up, it genuinely wrecks your study and makes the numbers meaningless because in reality some of them left for a baby or something like that. Considering there were no better drugs out when the 10 year study was released thugh I doubt any of them had left for avonex for example. Copaxone is pretty easy to take.

Marie,

I'm still pretty new to this MS thing, as you know. I don't have near the experience you and others have. But I think that Copaxone 10 year study is a joke. And I'm taking Copaxone, as part of a Combi-RX trial. Come on - half the participants drop out, and they still think the results are meaningful. I'll still continue my injections, because right now for me that seems to be the best option, but I don't know how much good they are doing. The original studies for Cop never showed it to have an effect on progression - the data they presented showed a reduction in the annual relapse rate. It seems, now they are trying to show how great Cop is in other respects. I remember speaking to the nurse coordinator for clinical trials at the nearby MS center, and she told me you can design a study to prove anything.

Sorry for the rant. I know it doesn't say too much toward your original post about the progression study. While I'll keep with injections for now, I'm starting to think something more aggressive might be the way to go.

what do u take peta? i forget.

My course:

DX - 2001 EDSS at 0, but had the Uthoff's thing with the eyes. Start Avonex almost immediately

Almost immediately I start the bladder and bowel problems. All lesions on my spine. Since it's eyes, bladder, and bowels and nothing else, I get a DX of Devic's and start to hold my breath!

I go to '05 with really not much change. My bladder got much worse, but I was still running evvery day after a 10 hour work day and my bladder was tolerable since I think any one symptom is almost tolerable if the entire rest of you is in good shape and not experiencing symptoms.

About this time I get the "Interferon flu" - marked depression and increase in side effects. We go off of Avonex and I opt for nothing since I'm still doing very well and am like a 1 on the EDSS, but all due to bladder and bowels.

Advance about 9 months. I have my first relapse that feels like a relapse and start to experience progression. I get another MRI and now I have 7 lesions in my brain. I start to really notice losing ability to run very far. Nothing I've ever experienced before. When I stopped a run before, it was because I was done, not because I couldn't continue; now it was because I couldn't continue.

From that point, I start to research Tovaxin and get in the trial (what I thought was great timing). The entire time during the trial I progress. I go from a 1 to as high as a 4.5 in 18 months.

About 8 months ago I quit the Tovaxin trial because it was junk for me. Now I've been on Tysabri for 4 infusions and feel as though it has actually stopped the onslaught. I'm a 4 right now and have been since I started the Tysabri. Right before Ty I took IVSM which I think knocked it down initially to give the Tysabri a less inflamed 'host' to run around in.

So now I'm feeling like the spasticity in my legs is getting worse, but I'm not totally sure that's not just due to me being a couch potatoe. I've got PT lined up soon (when my Rx for it gets here!) and then I'll feel like I'll know if I'm progressing or not.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Wow, I'm really glad to read these progression stories. You all look so normal to me

I find the idea of a 20 year nothing follwed by a 2 year zap really interesting, I would have expected the decline to be more gradual somehow. Why all of a sudden, why then? Sandy did you have a child natrually or something thinking along the vein lines and straining? just curious.

Lew you and jogging that's like me I was sort of shocked when I just started to slip. Ty was not out yet , novantrone I was dead set against because of heart issues it is a poor choice for me. I would have gladly done tovaxin for its safety profile if it had shown results as they hoped. Frankly the vaccine model was put forth in about 93, I watched for that development for years and years thinking it was the best thing coming because it was so targeted, even though by the time it was getting close I was in the not autoimmune camp. Frankly when it did not show the end point I was really sad, but it also reaffirmed for me that we are off track maybe with autoimmune ideas.


PX I KNOW! me too. I also take copaxone. WHen I saw the study I was so disgusted.....

then I went to my MS clinic doctor and he actually came in with a great ceremonious flourish "Marie great news! They have done and have released the 10 year cop study.....blah blah......" In that moment I was so disappointed in him and my respect for his ability to assess this material critically was completely unmasked for misguided.

I did not see it happen this way, but knowing MD offices what PROBABLy happened is that the Teva rep came dashing in the office with the same flourish to see HIM and gave him the full court press. Charitably, my assumption is that he never read the study directly, he was very busy person running this large clinic and trials.

Yes that is true, all people doing a trial of any kind starts out with a bias a belief about the outcome and they set out to show that specifically. They make no bones about it at all. That makes a very good argument for all trials to be run by independant organizations and not the companies themselves.

Candace pert the woman who discovered the Muu receptor was giving a speech in which she said, paraphrased, that people THINK science is this big objective thing where the scientist asks a question then sets out to design an experiment totally unbiased about what might come out, but that is incorrect, in reality every scientist has a belief and they set out specifically to prove that, and if the first experiment fails they try again until they get it.

So basically if your theory is total crap you won't be able to show it but as long as you keep trying and continue to think you are right, you can probably find a way to demonstrate what you believe is true. That's why we have peer review, so other people who don't believe things the way you do can see if you have changed their minds with your experiment and idea. If you have not shown it well then it "should" go down in the review process as bogus.

That's also why science gets stuck, if someone puts out a paper today that says "MS is autoimmune in this paper we will show how knocking out (thing) in Theiler's mice results in better outcomes........." That paper will get the nod of approval and will be reviewed as obviously right where as the paper that says the opposite is viewed as "probably wrong" and picked on mercilessly or totaly ignored (my ms doc did not read Prineas and Barnett's paper, he said he did not think anyone seriouly thought MS might not be autoimmune.........when that paper was showing MS autopsy brain samples with NO immune activation. Well it's pretty hard to come to a new conclusion if you dont READ the other papers )

that's why the doctor getting his information direct from the company is so diabolical. They need objective review to see if it is what they company says it means, barring that they need to perform that function themselves, but don't actually have time.

The abstract on pubmed does not talk about the 10 year study results the way my doc did which was directly from company materials and talking points. Subesquent ads have hinted at the same "spin" sbout its long term effectiveness.

ANd no worries about off toic I just want to talk in general about these things, whatever strikes your fancy about what I posted is fine. BUt it is interesting, though only of some value because of the timing, that the 91 study no one could even get DMD yet, the '01 follow up showed no changes in progression rates though DMD had been introduced , but so few were taking anything that it is impossible to say how overall progression rates have been impacted by these drugs on a large MS population like that.

the real study we need a large study of a population with whatever DMD's are now availble. Are we having any impact on progression with these approaches applied as they are today?
Thanks for the thoughts!

Marie, this is probably not welcome by the DMD people, but my progression was like Sandy's: next to nothing for about twenty years, then one day, after a week of feeling a bit strange, I went to the central post office, about a mile away, had to sit down when nearly there, which was very unusual for me, did my business, came out and realised I couldn't walk home. I phoned my husband who came to collect me but by the next day I could hardly walk at all. I looked down at my feet as though they weren't mine. There was no pain and never has been.

Neurologist from Addenbroke's, "Sorry, there is nothing I can do. You have secondary progressive MS."

Luckily, CAP antibiotics worked for me (my husband is a microbiologist) and Zamboni's treatment worked for his wife. My view is that a combination of the two will work for many more people.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Thanks Sarah, Abx helped me very well in terms of energy and clear heaed ness also. I just kept progressing. I'm glad I did it though it helped me a lot I'd say.

Is MS a combination of vein issues and then secondary consequences like infection of the lesion by germs when the BBB is disrupted? It could be, in fact I speculate that the high prevalence of EBV in MS brains has to do with nothing more than the fact that once the BBB is disrupted the b cells get in there since b cells carry EBV for life. Obviously lots of people have seen Cpn in there too. Cheer has speculated that endothelial dysfunction (the BBB is specialized endothelium) can account for all the different things seen in MS literature and can be seen as a kind of "unifying theory" along those lines.

SO it'd go like this:
-vein gets a blockage of some kind
-the blockage results in a backup
-the backup results in damage to the BBB
-anything you have leaks into the MS lesion area or goes there on purpose to "clean up": T cells, b cells(with ebv in tow) MMp9, macrophages, monocytes (with chlamydia pnsumoniae), red cells (with iron) and other stuff too.
-all that "stuff" induces iNOS and other oxidative injury to the brain tissue secondarily......
and some like CPn and ebv may set up house keeping in the tissue keeping the inflammation going. Totally speculative! but perfectly plausible.

Now, how can I set up an experiment to prove this