Liberation drugs

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

Liberation drugs

Postby frijkaard » Wed Jul 28, 2010 9:13 pm

For those that have already been "liberated" (I will get the procedure done in the next thirty days) I'd like to know what drug or drugs(if any) that you are currently on and why. I just got a new nuerolgist who is openminded and believes in CCSVI. However, he says that after liberation almost all of the patients go back to the same drug that they were using before the procdure. He says that this so because these big pharma (injectable CRAB drugs) drugs will help reduce MS symptons or their progression regardless of the outcome of the "liberation" process. I'd love to hear the comments from those that have been liberated.
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Postby muse » Wed Jul 28, 2010 9:35 pm

Three independent long-term studies showed CRABs are CRAP,
sorry. http://www.direct-ms.org/magazines/Embr ... 7%2010.pdf
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Postby Rose2 » Wed Jul 28, 2010 10:06 pm

Hi!
I was Liberated Oct. 2009.
I had stopped taking Avonex a few years before that. I took it for 7 years. I kick myself in the butt for every taking that stuff.
I felt better when I did stop. The exacerbations never changed frequency or strength.
I take only baby aspirin now. I will never let another Neuro talk me into taking that horrible stuff just because it might slow MS. They have no idea.
I have no MS symptoms either tho, so it might be easy for me to say.
I have not had any MS problems or any exacerbations since Liberation.
I call it empty insurance. But see how you feel and judge for yourself.
YOUR CALL.
Rose ;)
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Postby CureIous » Wed Jul 28, 2010 10:07 pm

Drugs or no drugs, your choice along with the counsel of your Dr. Some have stayed on, some have not. I've been "liberated" for a year, off drugs for 16 months. No plans to go back on at this juncture, be more than happy to kiss that particular evil goodbye. My signature says no relapses, that means just that, no relapses. That's my "expert" opinion based on experience. I doubt your neuro has queried every liberated person to find out if they are on the DMD's or not. That's the kind of statement that is spurious to me. I know they undoubtedly are giving you their expert opinion based on what they know about MS, which at times can seem to be more observational in nature than any concrete "plug drug A into problem B will achieve X result". I've talked to and read about plenty who tossed the drugs and many more who didn't.

So that's my observation but that's just one viewpoint. Stayed out in the sun so long today working I got burned without even realizing til later. Was so used to not being in the sun or in the heat before it never occured to me to use sunblock with my shirt off, duh. lol. Oh well, I guess the DMD's can't implant common sense now can they??

Mark.

Oh and it was avonex I was on for the record.
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 muse » Wed Jul 28, 2010 11:51 pm

…I forgot to mention that I’m still on a 100mg-post-angio-baby-aspirin (4 weeks since procedure) and that I’m taking a beta-blocker called Propranolol which opens blood vessels in the same way like alcohol does. Apart from that I’m in a similar mood like Mark which means I've just a simple vascular disease and not longer this mystical EAE-mouse-autoimmune-disease. ;)
Best Arne http://www.csvi-ms.net/en
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drugs

Postby joge » Wed Jul 28, 2010 11:59 pm

Zamboni suggests to go on using the drugs you used before..
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Postby muse » Thu Jul 29, 2010 12:24 am

…I was just a bit quicker because I’ve already got rid of all that CRAP in 2001. ;) Best Arne
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Re: Liberation drugs

Postby euphoniaa » Thu Jul 29, 2010 3:02 am

frijkaard wrote: He says that this so because these big pharma (injectable CRAB drugs) drugs will help reduce MS symptons or their progression regardless of the outcome of the "liberation" process. I'd love to hear the comments from those that have been liberated.


Hi frijkaard,

One of the things that is most misunderstood about the CRAB drugs is that they were NOT developed to "reduce MS symptoms" at all, and, in fact, they're almost guaranteed to CAUSE side effects. They aren't supposed to make you feel better like an aspirin would for a headache. Their purpose is to possibly reduce the number of relapses or maybe slow progression a bit - neither of which is easily determined anyway - and that's all they ever claimed to do. Even at that, the trials only showed about 1/3 "effectiveness" (whatever the hell that means) over the entire trial group. NOT that 30% were helped. NOT that all were helped about 30%.

I've never done the CRAB meds because I figured if they can't tell me how they work, and they can't tell me whether they're "helping," they sure can't tell me whether they're hurting me instead. I hope your neuro didn't actually tell you they'd "reduce MS symptoms," but it seems doctors often misinterpret them, too.

I keep wondering how the use of meds will affect the results of CCSVI studies. Let's see, will one's symptoms stay because they were caused by the CRABs and not by MS in the first place? Will one's symptoms go after CCSVI treatment BECAUSE one dropped one's CRAB med at the same time?

Questions we're all anxious to find out.

But I still wish good luck to you and to all. :)

Edited to add: And I agree that there's no data yet for your doc to know how many patients remain on CRAB meds after the procedure. Sheesh.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby bluesky63 » Thu Jul 29, 2010 5:01 am

There is data from the lovely Dr. Steinman at Stanford to demonstrate that a percentage of people are in fact made worse by the CRABS, a percentage are unaffected, and a percentage are helped. He believes that now he can predict who will be helped and who will be harmed. Make no mistake, many people are made worse by interferon, aside from side effects.

They were deemed successful only in that they reduced measurable lesions on MRIs. In the end they did not ultimately have an effect on disability progression. And another thing -- forgive me if this is controversial, since I know this is a raging discussion in many places, but there are people who believe that the inflammation could in fact be a *good* thing and that suppressing it might not be desired -- in fact, SPMS is what happens when the inflammatory stage ends.

To sum up: I suggest that people do their own research and not rely on info handed out or sponsored by the pharma companies when it comes to their own meds.

Now to your point: What should you do after a Liberation? (Look at me, I'm going all German with the capital L!) You have got to be able to trust your doctor and have a good talk about this and a good discussion about how you are treating a serious, lifelong condition. If anything happens and you end up in the ER, that's the doctor who will be in charge of your care, and you need to be on the same page.

There are so many options! The best thing is to try to get objective info. Everyone has great, well-meant ideas, and I am no exception. But I would remind you that the source of the info needs to be investigated. I have been amazed by TIMS and the great info here. If you haven't done so already, check out the different forums that go over the various options -- meds, l;ifestyle, nutrition, etc. -- which is about the best overview of the treatments available you might get on any forum. Take your time, do your reseach, ask questions, see what you think for yourself!

Take care of yourself, and best of everything! :-)
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Postby silverbirch » Thu Jul 29, 2010 2:34 pm

NICE the UK 's govering body are asking pharmo company's to reduce their cost on DMD as they are not effective in MS as they were lead to believe NICE conducted research over 4 year's.
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