Effectiveness of MS drugs

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

Lyon

Postby Gordon » Sat Jul 10, 2010 1:46 pm

Lyon, You are a family elder for God's sakes. Why not act your age. What a trivial rant you have made.

Grow up or get off this incredible web site that has added so much value to the search for meaning of this incredibly distructive disease.

May our Lord have mercy on your soul.

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Re: MS Drugs and People With MS

Postby JoyIsMyStrength » Sat Jul 10, 2010 3:31 pm

MarkW wrote:I realise that the 'group think' on the chatroom is that all MS drugs are the work of big bad pharma whose only purpose is to make money from poor sick pwMS.


Hey Mark, I still think you made some valid points in your overall post (pardon the above quote taken out of context), but one thing that has always bothered me is this: How long after a drug goes to market does it begin to make sense for them to pull back on the crazy pricetag? To put it another way, sure they must spend megabucks to research, study, test, lather/rinse/repeat. Sure they deserve to make money on their product. However the CRABs have been around for awhile and yet they remain very pricey.

Of course I doubt that many of us have ever actually paid full retail.

And... I'm not picking on you or singling you out. I'm just wondering if anyone has any insight.

Pam
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Postby gothicrosie » Sat Jul 10, 2010 4:01 pm

I have no pricing data but the patents on Copaxone expire in the next few years...that means generics will hit the market soon. That will significantly alter the pricing on that drug for sure. :)
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Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Re: MS Drugs and People With MS

Postby CureIous » Sat Jul 10, 2010 4:57 pm

MarkW wrote:
If you have CCSVI therapy please do not be mislead by immediate changes in your condition or if you have none. MS shows enormous variations so you will only get an indication if CCSVI is working for you in 6-12 months.

Kind regards,
MarkW


I tentatively celebrated my new gains post-op, wary of sticking my neck out too far. After 3 months, then off the thinners, things changed even more. Honestly, I don't feel as good as I did the first week, but that's okay, even 80% of that is plenty good enough for me lol. I'm all for people posting their non-gains if that's the case too, but as you well noted, give it 6-12 months before REALLY celebrating.

I don't think the CRABS/NOCRABS debate will be settled in our lifetimes, after all how does one prove that they aren't working, or rather that they are working, and using what criteria and on what patients?

Seems like the CRABS leave more Q's than A's. CCSVI is kinda like that, but definitely to a lesser extent, the long term effects and benefits will be just that, long term and out of our observational reach at this point, but the short term stuff is testified to aplenty, both the good and the bad and the neutral.... And that is what I think makes CCSVI so tantalizing, we can or cannot see "stuff happening" in the short term, and we all certainly hold out a candle of hope that the long term returns trend positive...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Lyon » Sat Jul 10, 2010 9:51 pm

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Last edited by Lyon on Sun Nov 20, 2011 7:58 pm, edited 1 time in total.
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Re: Lyon

Postby concerned » Sat Jul 10, 2010 9:56 pm

Lyon wrote:
Gordon wrote:Lyon, You are a family elder for God's sakes. Why not act your age.
I don't want to make you feel foolish but "Family Elder" status has nothing to do with the person's age, although coincidentally I am old.

Gordon wrote:Grow up or get off this incredible web site that has added so much value to the search for meaning of this incredibly distructive disease.
Actually, I was here first but you can leave it you would like.

Gordon wrote:May our Lord have mercy on your soul.
Although I'm a Devil worshiper I appreciate the thought anyway.




:twisted: :twisted: 8) :lol: :twisted: :twisted:
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Re: MS Drugs and People With MS

Postby eric593 » Sat Jul 10, 2010 10:20 pm

MarkW wrote:In real clinical situations the interferons work well on about one third of pwMS.


Actually, this isn't true, is it? The RABC's reduce relapse rate (over the entire active drug group) by about 30%.

That doesn't mean that they helped 1/3 of people, they might have only helped 5% of people A LOT, or 75% of people marginally. But I don't think the trial data distinguishes how many PEOPLE in the trial were positively affected, only the relapse rate reduction over the entire group generally.

So from that it might work SUPER WELL for a couple people who it completely stops relapse rate, but barely at all for the rest. There's no way to know.

That's my understanding of the trial results, they don't identify the percentage of people it will help or by how much it will help them, it talks about the reduction in relapse rate as a group compared to placebo.

Someone correct me if I'm wrong.
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You need to read my statement

Postby MarkW » Sun Jul 11, 2010 8:26 am

I wrote:
In real clinical situations the interferons work well on about one third of pwMS.

eric593 replied:
Actually, this isn't true, is it? The RABC's reduce relapse rate (over the entire active drug group) by about 30%.

Eric593 you need to read my statement "In real clinical situations". You then give data from clinical trials which are not real clinical situations. I don't know if you misread my comment or are just being provocative and giving the 'group think' view ?

Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby scorpion » Sun Jul 11, 2010 9:17 am

Gordon wrote:JUST FIRE THEM. I Fired mine by email. Pompous piece of Shit.


Come on Gordon. This topic seems to bring the CHILD out in everyone occasionally, huh? This forum has been highly emotional from the beginning, in MY opinion, due to the us against them mentality created from the get go.
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Postby Lyon » Sun Jul 11, 2010 9:21 am

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Last edited by Lyon on Sun Nov 20, 2011 7:57 pm, edited 1 time in total.
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Postby Rokkit » Sun Jul 11, 2010 12:01 pm

Lyon wrote:As I clearly mentioned, the problem was with Ashton's inference that if the CRABS weren't the solution, CCSVI is. Sadly, things in the world aren't always that simple and the CRABS not being the solution adds absolutely nothing in itself to the credence of the CCSVI hypothesis.

As a fellow family elder (:D), I think the main thing giving credence to the theory right now is that every vascular doctor that investigates CCSVI ends up pursuing it further, usually to the point of treating it if not stopped by administrators. I haven't heard of a single one standing up and saying this is a load of crap.
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Postby mangio » Sun Jul 11, 2010 12:28 pm

Why does it have to be one or the other.
After meeting with researchers over the last month
that are forming the new Pan-Vascular Treatment consortium I can't
believe it will ever be a this or that. Neuordegeneration
is just too complex a process and will not be solved easily.
Let's see where all this new thinking and investigation takes us.

Lyon please just come to the board with an open mind.
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Postby gothicrosie » Sun Jul 11, 2010 12:55 pm

mangio wrote:Why does it have to be one or the other.
.... Neuordegeneration is just too complex a process and will not be solved easily. Let's see where all this new thinking and investigation takes us.


I agree. There really is no black or white on this issue. What about those people who have been found to have CCSVI and NO MS. What does that mean? What about those with MS and no CCSVI? Of course, the argument there is the diagnostic methods are still being figured out, and I agree that determining what will give us an absolute diagnosis is difficult. Especially since we are just riddled with these darn veins and they can be blocked in any number of places. :)

I do not believe that a simple answer exists. The DMDs present an option for some, what exact number is there? Depends on the research you choose to read and what they choose to publish. I am on Rebif. I have had no attacks since onset. Does that mean the Rebif has kept new attacks at bay or the sleeping of my MS? Can't say for sure.

There will always be a need for neurologists. We still have those pesky nerves in our bodies and there are a host of other neurological disorders out there, MS is not the only thing in their books. I do admit to being lucky and having a compassionate and helpful neurologist. I am aware that many do not. Although I have not told him about my foray into CCSVI, but it is more of a feeling that "I don't want to piss off my dad" kind of feeling. :)

I think it is important to see the issue from all angles. Agree to disagree that there is no absolutes in any part of this CCSVI issue. We are all learning right alongside those doctors who believe in CCSVI and are fascinated and taking their experiences to new levels. We are lucky to have such pioneers on our side.

As far as the childish remarks, well, we all get passionate about what we believe to be the "right" side of an issue. It is when we regress to vulgar language, childish taunts, and outright anger that we lose an argument at any age.

"I've gotten both sides, and I can respect both sides of the issue. And that's what it's all about. You should be able to voice your opinion and respect the voice of the other side. You should be willing to educate yourself and know what it is you're dealing with." -Steve Nash
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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Postby Lyon » Sun Jul 11, 2010 1:00 pm

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Last edited by Lyon on Sun Nov 20, 2011 7:57 pm, edited 1 time in total.
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Postby gothicrosie » Sun Jul 11, 2010 6:07 pm

Thank you Lyon. It has become my favorite quote as we discuss/argue CCSVI across this world-wide-interweb thingy. ;)

It is from a basketball player that I was totally unfamiliar with. Those in the public eye tend to have the same problems we have. People misinterpret discussion for an angry-mob-like attack on their beliefs and on their person. Sometimes a different opinion is just that, different.

I enjoy a good debate too and agree with you that CCSVI has not been proven outright, the facts are not all there yet. We must be open to all the possibilities and all the avenues of discovery..especially since we are all walking down this road blindfolded. ;)

Here is the interview Nash did with that quote: http://hoopshype.com/interviews/nash_okelly.htm

In the beginning of the interview he is asked about his recent comments on Iraq and he says this: "My whole point was to get people involved. I wanted people to educate themselves so they could make an informed decision about one ideology or another. I stated my opinion and beliefs, but didn't ask people to think as I think."

Wise man that Nash, wise man.
Best,
Rosie
My blog: http://gothicrosie.wordpress.com/
transverse myelitis May '07 & optic neuritis Oct '07
DXd RRMS Dec. ‘07: No lesions & 3 OG bands
Hubbard MRV scan Jun. ‘10/CCSVI Jul. '10
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