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Old 08-01-2007, 04:34 PM #1
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msladyinca msladyinca is offline
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At this point in time, Tysabri is recommended for people who have failed at other proven and SAFER therapies. I am reluctantly impressed by it's track record (over this last year), but I think it is premature and irresponsible to recommend such a treatment to people who are new to treatment options.
I believe that it is highly reckless and irresponsible to promote incorrect information Re: Tysabri, as the correct recommendation for Tysabri by the FDA is: "it is generally recommended for patients who have had an inadequate response to, or cannot tolerate, any of the other disease-modifying therapies". http://www.nationalmssociety.org/sit...ds_natalizumab

Also, Tysabri is being prescribed as a first line and/or second line defense against MS.

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Our Neuro's have biases, that are NOT necessarily based on anything concrete. All of the CRABs have equal efficacy
Again, this is incorrect as Tysabri and the ABCRs differ substantially in efficacy. See the proven data: "The relapse reduction rates used were: TYSABRI was 67%, Avonex (Interferon beta-1a IM) 32%, Betaseron(R) (Interferon beta-1b) 34%, Copaxone(R) (glatiramer acetate) 29%, and Rebif(R) (Interferon beta-1a SC) 32%."

TYSABRI® Shows Reduction in Steroid Use/Hospitalizations & ABCR Comparison
http://http://www.elan.com/News/full.asp?ID=913012

Considering that there are over 14,000 MS patients currently on Tysabri therapy, with 300 patients being added weekly (with some of us receiving outstanding results), there is a distinct possibility that their neurologists believe the proven data on Tysabri (including the submitted three-year safety data), and not the inaccurate postings of same on a message board.

Quote:
I'd certainly recommend giving that [LDN] a go before trying Tysabri
Bethany, FYI... LDN is not an FDA approved drug for MS and it requires a prescription that needs to be filled at a "compound" pharmacy. Therefore it is my suggestion that you discuss your options for effectively treating your active MS with your treating MS doctor.

Whatever your decision, I wish you only the best and a speedy recovery from your current symptomatology.

Have a great week everyone.

Lauren

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Please feel free to visit my blog: Living with MS (My Tysabri Diary)
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Old 08-01-2007, 06:04 PM #2
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Originally Posted by msladyinca
Again, this is incorrect as Tysabri and the ABCRs differ substantially in efficacy. See the proven data: "The relapse reduction rates used were: TYSABRI was 67%, Avonex (Interferon beta-1a IM) 32%, Betaseron(R) (Interferon beta-1b) 34%, Copaxone(R) (glatiramer acetate) 29%, and Rebif(R) (Interferon beta-1a SC) 32%."
Quote:
Originally Posted by lady_express_44
Our Neuro's have biases, that are NOT necessarily based on anything concrete. All of the CRABs have equal efficacy
Lauren

Whoa! What Cherie is saying is basically true. Some of our Neuro's DO have biases whether you chose to admit that or not. I recently attended a 2-day conference in Washington DC put on by the FDA/AHRQ and there were neuro's there who admitted they would not rx Tysabri because they felt it did not have a long enough track record and for no other reason. I personally have spoken to neuro's who will not rx it until it has been on the market for at least 5 years, maybe longer. Those biases are based on nothing concrete. You can cram all the data you want down their throats and they will not change their minds. Some doctors are just plain averse to change, period.

As for her comment that all CRABS have equal efficacy, a percent point one way or the other is a minor point and there is no need to argue that or make an issue of it. The stats are based on those who use the drug and not the entire MS Community. Anyone can skew stats. You know that as well as anyone.

The medication guide was recently changed on Tysabri, as recent as last week. It is still not recommended as a first line of defense drug and the insurance industry is not behind that theory. They may never be no matter how much you go around to every MS site and try to push it.

In my opinion, calling another member of an MS forum reckless and irresponsible is just not necessary.

There have been no head to head trials pitting Tysabri against any of the ABCRs so I am not sure where you get any of the rest of your information.

Cherie also did not say that LDN was an FDA approved therapy, she called it "non-mainstream." Anyone who has been around knows that it is not FDA approved and BTW it has to be filled by a "compounding" pharmacy.

She also recommended, as did everyone else, that she talk to her neuro about treatment.

Please also remember, Lauren, that Tysabri doesn't work for everyone. Even Biogen/Elan representatives have agreed on this fact. Maybe no therapy is the best way to treat some people with MS. That is for the patient and their doctor to decide.

Good luck Bethany! Research and educate! That's the best way to help yourself!
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