Coming off Copaxone

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Coming off Copaxone

Postby Talltree11 » Fri Jan 14, 2011 3:20 am

Has any one come off copaxone because of recent studies regarding its effectiveness? :?
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Postby Absentee » Fri Jan 14, 2011 5:57 pm

where are these recent studies?
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Postby Stabilo » Sun Jan 16, 2011 4:19 pm

I'm curious too....I did some hunting but couldn't seem to come up with anything..... link?
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Postby Talltree11 » Mon Jan 17, 2011 5:00 am

Ok, I will post the details when I get a mo. It was shown that Copaxone and others were not very effective. k :roll:
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Postby EJC » Fri Feb 18, 2011 7:58 am

My partner has just decided to stop Copaxone after spending 12 months taking it daily without fail.

It just doesn't seem to be doing anything for her.

She had a successful CCSVI procedure in December 2010.
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Postby hannakat » Mon Feb 21, 2011 2:58 pm

Talltree11 ~ To my knowledge, none of the DMD's are very effective and I've never had a doc say they were. They help reduce flares by different percentages, but none stop the progression of the disease.

Copaxone has the fewest side effects of the DMD's available. You are likely to have varying degrees of skin reactions, dimples in fat tissue, but it doesn't cause other side effects (well... unless you accidently inject into the blood stream or muscle resulting in an IPIR).

If there's a new study out stating the Copaxone is even less effective than originally thought, I'd like to see it too!

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Postby EJC » Wed Mar 16, 2011 1:24 pm

Emma has now been off Copaxone for a month with no noticeable effects whatsoever.

In fact if anything she's feeling better off it although we are attributing this more to Baric Oxygen therapy than anything else.
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Postby Wonderfulworld » Thu Mar 17, 2011 2:28 pm

I had always read that Copaxone's efficiency at relapse reduction and severity of relapse reduction actually improved over time. That has been my experience. I have less invasive relapses even if I still relapse.

Also, it takes up to 6 months to start working.

Would still be interested in seeing the studies you mention Talltree11????
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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby Gale » Fri Apr 15, 2011 4:30 pm

You'll find that with all the MS meds.

I can say, I was forced to go off it over a year ago.
1 year, 4 months

I've been taking it since 1996.
During that time, I have very few episodes and the ones I did have, were extremely minor.

I am not willingly off Copaxone. It's a divorce/insurance issue.

Since being off it, I am now hit with sever inability to walk, breath, even keep my eyes open. Double vision... so much more, I can't even name them all including falling in the driveway which resulted in going to the emergency room since I can't feel if I did any damage unless tried to stand.
Then I knew something was up.

Copaxone kept me going for years and I'll probably be close to fine today if I could still be on it.

I had a lot I wanted to say, but I can't type anymore.
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Postby EJC » Mon Apr 25, 2011 6:28 am

The fundamental problem with all drugs like Copaxone is you genuinely can't measure its efficacy.

It's like hanging onions over your lounge doorway to keep elephants out....you seen many eephants in your lounge lately? Me either.

Emma has not relapsed since she quit copaxone in December, up until December she was relapsing monthly.

We put this down to a succeful CCSVI procedure though more than coming off an unquantifiable CRAB drug,
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Postby Filmmaker » Wed Apr 27, 2011 9:40 am

and don't forget that over time, it's just the natural course of MS to have less and less severe relapses... when you have an auto immune attack, your immune system is not as strong when you are 20 than when you are 40...it lessens over time as we are still human beings... that does not mean the damage goes away... so if Copaxone is supposed to reduce relapses over time, then guess what? it doesn't do anything more than following your own body rythme...
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Postby Bender » Mon Jun 27, 2011 12:38 am

Wonderfulworld wrote:I had always read that Copaxone's efficiency at relapse reduction and severity of relapse reduction actually improved over time. That has been my experience. I have less invasive relapses even if I still relapse.

Also, it takes up to 6 months to start working.

Would still be interested in seeing the studies you mention Talltree11????


While the statistics I've seen also support that conclusion (that it's more effective over time) I would point out that it's likely that the appearance that it helps more over time is at least enhanced by the people who it does not help going off of it, leaving only the people it is more effective for in the pool of long term data points.
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Re: Coming off Copaxone

Postby just1yogi » Tue Oct 04, 2011 10:54 am

I ran across this article by Dr. Eber, I found it at least thought provoking. Since I have spent a ton of money on Copaxone.
http://www.bmj.com/content/340/bmj.c2693.full
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Re: Coming off Copaxone

Postby Froggie » Tue Oct 04, 2011 2:16 pm

I think its efficacy depends on the person. I was on it for nine months and was having exacerbations every 2 months or so, including one where I was having difficulty breathing and another where I had an intention tremor in my right arm. I went to see an MS specialist and after he looked at my MRI's (brain and C-spine) determined that I was a non-optimal responder to the drug. Once I switched drugs, I haven't had a relapse in over a year.
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Re: Coming off Copaxone

Postby just1yogi » Wed Oct 05, 2011 2:12 pm

Froggie
What did they put you on to replace the Copax?
Did it work any better?
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