This Is MS Multiple Sclerosis Community: Knowledge & Support

More research suggesting that relapses play a limited role in disability progression. And calls for neuro-protection and repair.


http://www.msif.org/en/research/researc ... on_of.html

Ian,

A VERY interesting article!!

Yet, when you look at all the trials on MS medications, what is the first thing that they say?.....reduction in lesions and exacerbations have improved by "X" percent. Per the article, this may not mean very much at all. So what does that say about how effective these drugs may be?

I'm sure that the "established" group of MS researchers aren't going to like this article one bit!

Harry

Harry,

Yeah, they probably won't! And I just emailed it to a couple of them with just a small comment (or should I say question) from me.



Deb

A second thought here...........

Maybe neuros need to be much more specific with their patients?? And ask the question: Are you looking for relief from relapses and possible new physical symptoms that come from relapses and exacerbations (which MAY improve quality of life somewhat); or are you looking to slow down or stop actual MS progression?

The problem may be simple miscommunication. Most of the neuros already do know that progression is still very hard to arrest or slow down at all and unlikely to succeed all that much; BUT their recommendations to patients with regard to considering whether they want to be free from the physical symptoms that come from exacerbations and relapses would likely be more valid and therefore correspond more closely with the "data/statistics" of the CRABs.

You can have exacerbations that don't leave you with permanent damage, but the exacerbations themselves CAN leave you with unresolved new symptoms for quite some time, and can often greatly interrupt what quality of life you DO have. You may still be progressing anyway in eventual disability, BUT the quality of life in the meantime might be somewhat better if you opt for treatment (or worse, depending on if you suffer greatly from the side-effects of the CRABs). Hard choice to make.

When a patient is attempting to decide if they want to try one of the CRABs or not, isn't this what it will mainly boil down to, though? Those considerations I have just mentioned?

Maybe neuros just need to speak in more literal terms with their patients. (?)

Deb

Harry,

I've seen a number of articles like this. I think I already mentioned that I asked one of the UK's leading MS neuros - 'Is MS an inflammatory disease of the CNS which leads to neuro-degeneration, or a neuro-degenerative disease of the CNS where inflammation is a response (for some)?'. He said that this was the pivotal question, but they did not know.

The current DMDs do not appear to have much effect on the course of the disease - the drugs companies never say 'delays progressive stage by X years' or 'Stops further disability'. What we are buying are treatments that reduce the number of relapses or reduce the number of gd enhancing lesions etc. Whatever that means!

The experts still have not identified what is driving this disease and certainly haven't shown that it is the immune system / inflammation (which could just be a secondary response).

The need for neuro-protection and repair is cited in most research papers these days - a recognition that attempts to dampen the immune system have not really altered the course / underlying progression of the disease.

But of course, the picture is never clear-cut. Some have reported good results from Campath 1-H and Novantrone. But only time will tell if there is any lasting impact.

I once posted a video discussion with Dr Gavin Giovannoni of the Institute of Neurology in London. He suggested that the heavy duty immuno-suppressants might merely convert a relapsing / remitting course to a progressive course. This would suggest to me that there are different mechanisms at play - there is an underlying progressive disease with inflammation / relapses superimposed (as suggested by the French article).

I would certainly feel better (in my head) taking something which protected my nervous system than something which just dampened down the immune system (which I am).

Ian

Remember, a lot of the AEDs that are prescribed for neurological pain, etc. are often neuroprotective - with some indicating being highly so.

And as we know, some of the anti-depressants are neuroprotective in a lot of respects, too. Even some vitamins, etc. help with that.

Deb

Ian,




How very true. I pointed your link out to a friend of mine who does MS research and this person came back to me with info on how this translates into what Biogen has said about Tysabri (you know mention of this just had to come up )
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"If you look at the right up on the Tysabri above Table 1 where they show that Tysabri had this significant difference in the T2 weighted scan but not the Enhanced Gadolinium scan (T1), they state "The exact relationship between MRI findings and the clinical status of patients is unknown. Changes in lesion area often do not correlate with changes in disability progression. The prognostic significance of the MRI findings in these studies has not been evaluated." Yet they go on to
say how great Tysabri is because it reduced the T2 lesions so much.

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And this is the kind of info that concerns me at how the "approved" MS medications have been portrayed over the years. The drug companies highlight the numbers of results that mean little if anything to the disease and then use this information to "sell" the drug to the masses.

While I encourage the ability of MS patients to choose what treatment they want to pursue, I like Odd Duck's suggestion that the neuros thoroughly explain just what the patient can expect. But that is wishful thinking and happens so little. The patient is given promo material by the doc's office and told to go home and decide what drug to choose. In many cases, the doc tells the patient what he is going to prescribe. And we end up with a lot of MS patients (actually their insurance companies) paying a lot of money for medications that make the drug company rich but provide minimal, if any, benefit to the patient.

And when you have been following this scenario for many years like I have, you have a tendency to have a lot of suspicion about these drugs.

Harry

Yeah, so true, Harry.

Yet the actual paper posted in the first post of this thread says campath does not reduce disability. we have already posted this abstract on the abx website for the same reason it appears here. It makes us aware that the status quo is absurd.

But can anyone point me to the research that allowed the author to make that statement in the paper in the first post? Where's the research that says Campath did not reduce disability? I've heard it from others also, but have never been able to reference it. I have looked but can only find many many pages of what essentially amounts to a preclinical data marketing blitz precisely of the nature Harry pointed out "Reduces lesion remarkably!!". IMHO the drug companies know that we and our neuros are so desperate for SOMETHING and that they can create demand ahead of time by doing this to us. It reminds me of the goat serum "excitment". My doctor told me last time I saw him that tysabri helped people he'd treated and he was taking names of people lined up for it as soon as rereleased. he wondered did I want to get on that list?

It's not OK with me to risk PML(tysabri, intereron), heart damage (novantrone) or immune suppression that potentially could result in cancer so that I can reduce inflammation. There simply is not evidence that reducing inflammation helps, and all the time more comes out saying it does not just as this paper does.




This made me want to weep. I had benign MS 6 years after diagnosis I was still jogging. NO one knew I had MS. My brain was apparently coping with whatever MS is at that point. HOwever, I was pressed to take copaxone and did. I was scared of MS and what it could do to me. My doctor was very firm in stating that the real damage happens early and we have to get out ahead of it. he quoted that the people who took cop from the first of the trial compared to those that were switched from the placebo group 2 years later always did better than those who'd had that 2 years of no treatment. Nervous and stressed all the time thikning about how much worse I might get, I agreed.

In about 6 months I progressed. I talked to my doctor, and he said firmly that we caught it just in time. I'd have gotten much worse if not for the drug. Maybe that is true, there is no way to know any answer to that is there? My MRI today looks almost exactly like the original years ago.
My neuro said that it looks better than many on a first visit.

But I am SPMS. I can barely walk now, I can only barely drive, let alone jog. At 15 years post diagnosis, I am not at all behind the "normal" secondary progressive phase. In no way is my benign MS now benign. I could make the argument that I would be better with out cop, but the doc argues that I AM better, he's sure of it. I ask you, is the neuro input more authoritative than mine? Is he being "scientific"?? If so, how?

So my MRI looks OK, I can hardly walk. I do not hang a picture of my pretty MRI on the wall and say to myself "well at least my brain is OK!" He does not know, really, anything about how I would be if I'd not taken this. He is in fact influenced by the marketing material he reads and this profoundly influences his assessment of my situation and the value of what we have done. He's a believer! All the evidence points the other way.

There was a study done a long time ago that a doctor mentioned in which MD's who read the JAMA were tested two weeks later to see what they remembered from the journal. By a large margin, the MATERIAL IN THE ADVERTISEMENTS with their snappy little bulletin points was what the docs remembered, NOT THE ACTUAL RESEARCH. So I ask you, if you're a neuro and you read the neurology today and there are ads for CRAB every one "spinning" the research into little soundbites and you also read the post that says inflammation is a red herring at the beginning of this thread, which sticks with you? I tell you, that one lonely little paper does not look too impressive after pages and pages of ads all repeating the value of decreased lesions. It starts to look theoretical and preliminary. Besides, there you are and you've been prescribing th is stuff for years, convincing people to do it.

There must be others out there with this same story if the paper we are talking about is correct. There must be many who took a CRAB and progressed right on schedule.

I'm sorry my posts are so long. Thank you for being there.
marie

Hi Marie--

You asked:
Here's a link to a front page story on ThisIsMS that speaks to this.

Sharon

Oh wow Sharon thank you so very much! What a light you are.
marie

Marie,

But Campath did reduce disability for those in the RR stage. See Campath thread for reports by Raven and Lab Rat. I've met Raven and he was thrilled by the improvements he has seen.

But hope is on the horizon for those with SP - see the recent post on BioMS. And there are also trials with Rituxin. So plenty of hope if the abx do not work for you.

Ian

I cannot attest to what causes MS, I cannot say whether it is auto-immune or not, I cannot prove that reducing inflammation beneficially affects the course of the disease. What I can say with absolute certainty is that I was EDSS 4.0 prior to treatment with Campath. It is the first anniversary of my treatment tomorrow and right now I am EDSS 1.5 to 2.0 at worst. I have gone from 4 major relapses per year to none and MS is no longer the major factor in my life that it was.

Perhaps it was just blind chance, I may have been fated to remiss dramatically anyway and this just coincided with my treatment. It may be that this period of remission is temporary and that I will progress in a more insidious fashion sometime in the future.

Right now I don't care. IMHO I have been given a lifeline and I have grabbed it with both hands, I am reconstituting the life I once had and that includes getting married soon.

Everything else I will leave to the scientists.

Robin.

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Do not go gentle into that good night. Rage, rage against the dying of the light.

So happy about you Robin, but this problem is not going to end, as i said in others posts, until we don’t know the cause of MS without this we are like walking in the dessert, completely lost, trying all the new drugs the pharmaceuticals put in the market, with the consequent problems.
I think MS is a disease with more than a cause with similar symptoms. AD is catalogued as a neurodegenerative disease and in a recently article researchers say that is a myelin problem: May be all the CNS diseases are more closely than we think.

http://www.forbes.com/lifestyle/health/ ... 29998.html

We need researchers not controlled by corporations, because they need chronic diseases and we do not.

Rita

i hate walking in dessert. especially when my doc says i can't eat it. lol