A thought about drug trials and CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

A thought about drug trials and CCSVI

Postby LR1234 » Wed May 26, 2010 7:58 am

I just had a thought that maybe the drug companies might want to screen MS patients for CCSVI before they enter a drug trial.

At present the DMD's offer a reduction in relapse rate of about a third (copaxone/interferons) I think Tysabri might be higher.

Maybe they are not being so effective because some MSers have CCSVI severely, this could be skewing their results and making their drugs seem less effective.

They might even work on the progressive patients once CCSVI has been taken out of the equation.

This may be a way helping the resistance to CCSVI and could get all of us MSers scanned at the very least.

:wink:
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Postby costumenastional » Wed May 26, 2010 8:13 am

the drugs currently "available" for ms, target only the immune system's reaction due to inflammation. if ccsvi is real, the only need for a patient to stay on drugs is to avoid any further relapses until inflamation subsides for good.
their drugs will never be able to offer something regarding progression and they know it very well.

if the liberation treatment is proven to stop relapses and progression there is clearly no reason for drugs.

until then, for whom may be on drugs already, better safe than sorry and i totally respect that.

for me, drugs suck.
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Postby LR1234 » Wed May 26, 2010 8:38 am

They do suck, i agree but I think we must be careful that assuming because the CCSVI issue has been fixed that the immune system will automatically switch off something it has been doing for many years.

The blood Brain barrier won't suddenly close and the antibodies will not suddenly disappear. (in my humble opinion)

I hate the drugs as much as anyone else (I have never taken a DMD for that reason) however I believe a dual approach to MS will probably be the most successful and lets face it the more help we can get the better! (Copaxone from what I can tell is not dangerous to the liver and can actually help with rebuilding cause of its high protein)

How do you know that the drugs wouldn't help keep the inflammation and immune system in check whilst you are healing from your CCSVI op?
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Postby Cece » Wed May 26, 2010 10:46 am

I have been thinking about this too...every research trial tries to create as controlled an environment as they can, that's why people are randomly assigned to the different groups, etc. But if how bad your CCSVI is turns out to be the single biggest factor in progression and other things, then it's probably been a confounding factor in all the studies. Randomly assigning the groups helps, but it does not mean both groups are equal; if one group has more CCSVI, then that's the group that turns out worse, regardless of what was being tested.

I think, before CCSVI, a lot of MS research was like trying to nail jello to the wall. Now the researchers actually have some lumber, can't wait to see what they do with it.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby costumenastional » Wed May 26, 2010 10:57 pm

LR1234 wrote:How do you know that the drugs wouldn't help keep the inflammation and immune system in check whilst you are healing from your CCSVI op?


This is exactly what i wrote friend. IF CCSVI is indeed beneficial, drugs should be continued until the inflamation subsides. It could take years, months, weeks as it could never happen. Who knows?
All i am saying is that drugs are given to control relapses, symptoms and such while the concept of CCSVI is to target the underlying mechanism of the disease. Two different things in my opinion which should work together until each one of us is sure that CCSVI is working for him/her.

Have in mind that IF CCSVI proves credible, some of us WILL stop taking drugs eventually and the pharmas are not only interested about what they will make in the next couple of years. They want to keep selling for ever, more and more as time goes by.

In no case CCSVI and drugs can work together in the long term and this is why there is a war going on.

Im my also humble opinion, for those who will be helped by the liberation, a new generation of drugs will have to emerge, in order to help detox or whatever after the immune system has stopped to cause inflammation, relapses and loss of brain volume.

All these are scenarios for the time being but i assure you that scenarios are sometimes more than enough for a stock to drop dead.
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Postby BooBear » Thu May 27, 2010 4:14 am

There are other drugs out there, though, that can help with the inflammation outside of the CRABS.

Minocycline, for example, is an antibiotic with anti-inflammatory AND iron chelating properties. Talk about a double-whammy for post-liberation treatment!

These and other meds should also be explored. Eventually, we will all be in a place where we don't need to get poked to feel better. Wait- that came out wrong. :twisted:
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Postby LR1234 » Thu May 27, 2010 6:16 am

I am taking doxycycline at the moment to try and help with a vertigo relapse and it seems to be helping. I hope doxy chelates iron too:)
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