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Old 08-01-2007, 06:07 PM #1
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Quote:
Originally Posted by msladyinca View Post
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
Lauren, according to your own attached link:

"Because Tysabri increases the risk of PML, it is generally recommended for patients who have had an inadequate response to, or cannot tolerate, any of the other disease-modifying therapies that are available for treating MS (see Precautions)."

Which is what I said, in effect, but just my own words:

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Originally Posted by lady_express_44 View Post
Hi Bethany,
At this point in time, Tysabri is recommended for people who have failed at other proven and SAFER therapies.
Recommended = generally prescribed
Failed = inadequate response (or cannot tolerate)
SAFER = "because Tysabri increases the risk of PML"

Quote:
Originally Posted by lady_express_44 View Post
Our Neuro's have biases, that are NOT necessarily based on anything concrete. All of the CRABs have equal efficacy, and if one doesn't work, it doesn't mean another won't. What about Copaxone or Betaseron, which are different drugs then Rebif? . . . There are still a few other mainstream options available to you.
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Originally Posted by msladyinca View Post
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%."
So, according to your own data on the CRABs (which includes only the effect on relapse rates, not disease progression, BTW):

Avonex = 32%
Betaseron = 34%
Copaxone = 29%
Rebif = 32%

Based on that data, I still say that they have virtually equal efficacy, and the only notable difference is whether one of these 4 different drugs might work better for an idividual.

Bethany, I would still recommend you ask your Neuro "on what basis" he is recommending a switch to a (currently) much riskier drug, instead of trying you on one of the other existing drug options.

Cherie
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Old 08-01-2007, 06:16 PM #2
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Biogen has recently changed the wording on the Touch Pamphlet for Tysabri and it now reads:

Because of the chance of getting PML, TYSABRI
is generally recommended for patients that have
not been helped enough by, or cannot tolerate
other treatments for MS

Here's the link -

http://www.fda.gov/ohrms/dockets/ac/...n-Addendum.pdf
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Old 08-03-2007, 11:57 AM #3
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Bethany, maybe it is time to go back to those Drs. and have a talk about that Rebif. Maybe it isn't working. Maybe you are having a flare.

So my advice would be go on in the Doc and see what they advice.

(oh, and eat chocolate! )
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Old 08-03-2007, 01:33 PM #4
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Quote:
Originally Posted by Taffy View Post

So my advice would be go on in the Doc and see what they advice.

(oh, and eat chocolate! )
Ya Know---
I do think that the chocolate is doing me more good than anything else!!

Lately I've been partial to combining the McD's $1 menu sweet tea (w/NO ice!!) and $1 menu chocolate chip cookies. Take them home for the middle of the night (better @ 2AM or later!). By then, the mostly sugar tea is nice & cold!! And there's LOTS to last through the night since I use my own ice!!

Thanks so much for all of the info, Cherie!
I'll print it all and read it slowly tonight with the spoils of my afternoon trip to the drive-thru!

Bethany
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Old 08-05-2007, 01:47 PM #5
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Speaking of chocolate, I was watching MSNBC this morning and there was a piece on this woman who broke into and robbed a chocolate store! It was hilarious. She was grabbing fudge and all sorts of chocolate. I guess she lost it at the rocky road fudge counter and broke the cabinet. They caught here a couple of blocks away with chocolate stains all over her blouse and her face.

I guess she was having a chocolate meltdown! I checked out the photo and it didn't look like Taffy so I guess our Taffy is safe!
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Old 08-05-2007, 02:19 PM #6
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OMG...too funny..

Quote:
Originally Posted by Av8rgirl View Post
Speaking of chocolate, I was watching MSNBC this morning and there was a piece on this woman who broke into and robbed a chocolate store! It was hilarious. She was grabbing fudge and all sorts of chocolate. I guess she lost it at the rocky road fudge counter and broke the cabinet. They caught here a couple of blocks away with chocolate stains all over her blouse and her face.

I guess she was having a chocolate meltdown! I checked out the photo and it didn't look like Taffy so I guess our Taffy is safe!
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Old 08-07-2007, 07:27 PM #7
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Quality of life (and cost) would be huge issues to me. When I see people who say that CRABs have cost them QOL or are making them go into debt, I wonder if it's really worth it.

In my case, the CRABs work well, and cost me so little that's it's worth it. There is no cure. It's not worth killing yourself over something that might have a small benefit.
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Old 08-07-2007, 07:33 PM #8
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Quote:
Originally Posted by Av8rgirl View Post
Speaking of chocolate, I was watching MSNBC this morning and there was a piece on this woman who broke into and robbed a chocolate store! It was hilarious. She was grabbing fudge and all sorts of chocolate. I guess she lost it at the rocky road fudge counter and broke the cabinet. They caught here a couple of blocks away with chocolate stains all over her blouse and her face.

I guess she was having a chocolate meltdown! I checked out the photo and it didn't look like Taffy so I guess our Taffy is safe!
it's ok folks...they didn't keep me locked up very long.
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Old 08-12-2007, 10:54 PM #9
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Default Hi Bethany

I live in Maryland too, and some recent changes on my MRI as well as severe arm fatigue have my neuro sending me to Johns Hopkins for further evaluation....he had mentioned a possible spinal tap but then backed off and said lets see what they say...I think I have exhausted his testing ....he did emgs and ncs and dopplers on my arteries, I see him also for migraines..just wondering if your doc did more tests, or did he send you to Hopkins for more tests and what your sx were? I have already been seen there once for a different issue that they couldn't figure out and am being put with same doc....right now looking at PN testing, I think.....I just don't want to be blown off....how do you make them give you the right tests? My recent MRI after 5 months did have some focal changes ....more lesions....neuro still not sure on the the MS at all....
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Old 08-15-2007, 07:47 PM #10
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Beth,
I'm not on any DMD's or WMD (my wording). Copaxone nearly killed me.
I also decline Ty and Novantrone.

As I decline, my Neuro appt. is getting closer, I may need to make a decision.

Not now.

Talk to your Dr., these meds effect us all differently.

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