Combo treatment

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

Postby Lyon » Thu Jul 27, 2006 4:38 pm

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Postby HarryZ » Thu Jul 27, 2006 8:12 pm

Dignan,

With all due respect to Dr. Lucchinetti, she often is at odds to those who present different theories of MS. I believe she also challenged The Cochrane Group's assessment of Copaxone.

I read an excerpt somewhere that Prineas and Barrett responded to her comment about the lesions reported in their paper but can't remember what they said. Also, Prineas and Barrett analyzed 12 different lesion samples and not just the one which Luccinetti wrote about.

But these different points of view about MS by the experts simply point out the many opinions held by these researchers and just add more confusion to this mysterious disease.

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Postby bromley » Fri Jul 28, 2006 5:31 am

For those who are interested, Dr Lucchinetti is being funded by the NMSS - the Lesion Project. Her initial work identified four different types of lesions - and suggests that an individual sufferer only has one type of lesion. All to be confirmed but many neuros believe this might be a big breakthrough if confirmed and lead to more tailored treatments. In my humble opinion I think her work will lead to a much better undertanding of this disease. Her recent presentation is below:


Pathological evidence for immune effector heterogeneity in MS – Claudia Lucchinetti

Dr. Lucchinetti, who has done extensive research on MS lesion tissue, reviewed various pieces of evidence concerning MS lesion patterns and characteristics that have been identified. Much of this related to her findings of four different lesion patterns in MS biopsy/autopsy samples.

In type 3 lesions, MAG (but not MOG) is missing; this phenomenon is also seen in some viral and ischemic disorders. One hypothesis for this phenomenon is that nitric oxide (NO) compounds damage the mitochondria of oligodendrocytes which leads to energy failure in the cell.

When interpreting the Barnett & Prineas paper that presented multiple lesion patterns simultaneously in one patient, keep in mind that the subject had recently had steroids which may have dampened inflammation in the tissue, and that certain lesions may have been caused by hypoxia around the time of death as opposed to being true MS lesions.
Imaging research shows that ring enhancement is never seen in pattern 3 lesions, only 1 and 2, which correlates with pathology observations of sharp macrophage borders in patterns 1 and 2. Also, differences in lesion intensity between patterns 1 and 2 suggest greater destruction/less repair in pattern 3 lesions.

In Balo's concentric sclerosis, the rings are likely due to massive expression of inducible nitric oxide synthase (iNOS) in the lesion, which is countered by expression of stress proteins at the border. This expression and counter-expression forms rings of preserved tissue within the lesion.
The four lesion patterns identified so far have come from studies of white matter. Do similar patterns exist in gray matter, such as the cortex? Dr. Lucchinetti has begun studying 123 biopsy samples that included gray matter, and has found active lesions in 37%. Many appear to be very inflammatory, symptomatic and destructive. Some overlap the white matter boundary while others are contained within the gray matter. She will continue studying these and will also soon be adding spinal cord lesions to her investigation so that they too can be better characterized.


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The work of Prineas and Barnett focused on those who had died following an MS attack. A rare event thankfully. One of my neuros said that the young woman who died also had classic MS lesions. The P&B work is techy stuff and I leave it to the neuros to debate the intricacies.

On the Cochrane report which Harry often cites - this said that Copaxone was next to useless. I find it odd that insurance companies and the National Health Service in the UK would pay out huge amounts of money for a drug which had no effect (and has been shown in trials to reduce relapses - whatever that means.)

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Postby HarryZ » Fri Jul 28, 2006 6:43 am

Ian,

On the Cochrane report which Harry often cites - this said that Copaxone was next to useless. I find it odd that insurance companies and the National Health Service in the UK would pay out huge amounts of money for a drug which had no effect (and has been shown in trials to reduce relapses - whatever that means.)


You make a very valid point when it comes to Copaxone. Here we have a group of MS researchers (headed by Dr. Munari) who looked at the early Copaxone trials and then published their less than complimentary paper on the drug's benefit. Yet insurance companies and your NHS are paying out millions for people to use it.

So two groups of people who look at the same information and come up with VERY different conclusions. And they wonder why MS patients get so frustrated!!!

Take care.

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Postby bromley » Fri Jul 28, 2006 7:07 am

Harry,

I think differences of opinion run right across this disease from cause to treatment options etc etc. The only 'truths' are that drugs companies make lots of money from MS drugs, MS treatments always have side-effects, and you'll never see a neuro travelling to work on a push bike (usually a nice new BMW).

The note I posted from the conference attended by Art and Hollie from the BCP also had a session from Biogen who are working on re-myelination. That would be like Ford coming up with a car which never broke down and never rotted - bad move in terms of future sales. I suppose they could come up with a Tysabri / re-myelination combo in one infusion - as long as it works I won't complain.

Ian

PS You know I'm not one to spread rumours, but I heard that you posted so much stuff on Tysabri on the BrainTalk site that the server packed up and the website is down. Please restrict your postings on this site as we don't want the same happening here.
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Postby HarryZ » Fri Jul 28, 2006 11:07 am

Ian,

The only 'truths' are that drugs companies make lots of money from MS drugs, MS treatments always have side-effects, and you'll never see a neuro travelling to work on a push bike (usually a nice new BMW).


Ain't that the truth!!

PS You know I'm not one to spread rumors, but I heard that you posted so much stuff on Tysabri on the BrainTalk site that the server packed up and the website is down. Please restrict your postings on this site as we don't want the same happening here.


Yep...The Brain Talk Server contracted "PML" ....Posting Meltdown Lesions from too many Tysabri messages :)

Actually, this isn't the first time the Brain Talk server has had a severe crash and been off line for several days at a time. Don't know what the problem over there is but to bring down the site for that length of time it obviously is serious.

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That was funny!

Postby notasperfectasyou » Fri Jul 28, 2006 11:08 am

I chuckled. I've been wanting to post at that other site for a while myself. It's really sad to think that someone at a large Pharma may have actually invented the cure and it's not being released because of the impact on profits. We tend to have a cultural sense that large corporations are greedy to the extent of doing stuff that is clealy harmful despite the fact that they know it's harmful and they know how to do it in a less harmful way ----- cigarettes as an example.

Conspiracy theory aside, so long as white blood cells continue to have this malfunction that causes them, when activated, to attack myelin, anything like re-myelination is still maintenance and will need to be taken as a therapy and not a cure. That was of course grounded in theory and not hard fact. napay
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Postby Lyon » Fri Jul 28, 2006 5:13 pm

oo
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Postby HarryZ » Fri Jul 28, 2006 7:49 pm

Bob,

Does it mean that if an untreated person traditionally had one exacerbation per year that going on the crabs would mean 30% less exacerbations or that they would be 30% less severe or both?


PMFJI but perhaps I can put your question into perspective.

In Dr. P.O. Behan's Pathogenesis of MS, a colleague of his sort of answered this question. He started off by stating that the average MS patient experienced one exacerbation per year. After 3 years, he would likely suffer 3 exacerbations.

Now if this patient decided to use one of the CRAB's, the stats showed that he would end up getting about a 33% reduction in the number of attacks. (that's what the trials showed) This meant that after this 3 year period, the CRAB user would suffer only 2 exacerbations.

But during this 3 year period the CRAB user would have to inject himself hundreds of times and suffer all the possible nasty side effects of whatever drug he was using.

Now the doctor who pointed this out went on to say that he would likely still prescribe the drug for his MS patient if by doing so, it stopped the progression of the disease or slowed it down considerably. But the CRABs simply were not capable of doing this and therefore the doctor would never prescribe any of these drugs to his MS patients.

Sort of makes you think about it!

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Postby Lyon » Fri Jul 28, 2006 9:50 pm

oo
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Postby HarryZ » Sat Jul 29, 2006 5:50 am

Hi Bob,

Having the cost of the crabs covered by insurance and the use of crabs accepted by the neuro makes it easier to go with the status quo for now since at this point my wife's only had one mild exacerbation.



Absolutely. I wonder, though, how many MS patients would continue to take one of the CRABs if they had to pay, let's say 1/3 of the cost of them...which would amount to about $ 500.00 per month.

Earlier I had great hopes that things would go quicker regarding research using T suis in MS human trials but even though T suis has proven absolutely safe and effective in earlier IBD human clinical trials, for some reason the FDA is really dragging their heels when it comes to MS.


Kind of makes you wonder, doesn't it?

When I had my house built I had problems with my builder so I made a complaint to the Michigan board which licenses builders. I learned that the boardmembers are builders themselves who are sympathetic to fellow builders. Kind of the fox guarding the henhouse.


Let's just say that they look after their own first! BTW, where in Michigan do you live. I grew up in Windsor, across the border and my dad worked in and around the Detroit area for many years.

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Postby bromley » Sat Jul 29, 2006 8:13 am

Harry / Bob,


Harry wrote:

where in Michigan do you live?


This thread started off about combo treatments - it's now getting too friendly like a gay dating site for men of a certain age. :lol: I was never a fan of pictures on this site - e-mail them to each other if you must.

Bob,

On the data for the CRAB drugs - the 30% reduction in relapses is an average. When I told my neuro that I wasn't impressed he said that some patients did much better, to which I responded that someone must see hardly any benefit at all. His advice was do something i.e. take one of them as they are the first line treatments at this point in time. I'm sure your wife's neuro might be of the same view.

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Postby Lyon » Sat Jul 29, 2006 8:16 am

oo
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Postby HarryZ » Sat Jul 29, 2006 8:27 am

Bob,

Laingsburg, near Lansing. It seems a lot of us are from this corner of the world. Members have recently mentioned they were in Toronto, Hamilton, another London (Jimmylegs?).


Never got to Lansing the time I lived in Windsor....more around the Detroit area and Port Huron. I didn't realize that Jimmylegs lived in London....thought he was close to Hamilton since he mentioned the MS Clinic at McMaster University.

Take care.

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Postby Lyon » Sat Jul 29, 2006 9:22 am

oo
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