NEW DRUG TO ME !!
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Posted by: Steve-In-Tennessee ®

06/16/2003, 12:01:09
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I WAS JUST WONDERING IF ANY ONE HAS HEARD OF A DRUG THAT IS ONLY AVAILABLE FROM ENGLAND, CALLED "XENAZINE" TETRABENAZINE. MY DOCTOR HAS ORDERED THIS FOR ME. IT IS NOT APPROVED BY THE FDA YET. STEVE-IN-TENNESSEE






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Re: NEW DRUG TO ME !! - tetrabenazene
Re: NEW DRUG TO ME !! -- Steve-In-Tennessee Top of Thread Archive
Posted by: Virginia ®

06/17/2003, 09:54:34
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Dr. Jankovic mentioned it last year at the conference. He is doing some research with it. It appears to have some promise for those with tardive dystonias. Don't know anything specific about it, but you can do an internet search on it to find out more. I'm sure Jennifer would be glad to help with that.

Good luck to you in finding a solution to your situation. Keep us informed of your ups and downs. Who knows - maybe what you are trying could help others with breathing problems.

Virginia in AL







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Re: NEW DRUG TO ME !!
Re: NEW DRUG TO ME !! -- Steve-In-Tennessee Top of Thread Archive
Posted by: rita ®

06/17/2003, 11:55:11
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Hi Steve
I wonder why your dr. is letting you take a drug not approved by the FDA?
Good luck with it..Take care Rita






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Re: NEW DRUG TO ME !!
Re: Re: NEW DRUG TO ME !! -- rita Top of Thread Archive
Posted by: Steve-In-Tennessee ®

06/17/2003, 12:12:09
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RITA, THANKS FOR YOUR RESPONSE MY NEURO GUY HAS USED THIS FOR SEVERAL PATIENTS AND MOST HAVE HAD REALLY GOOD RESULTS. WE ARE GETTING A 30DAY SUPPLY TO SEE HOW IT WORKS. WISH ME LUCK. I WILL DO A POST AFTER A COUPLE OF WEEKS. BY THE WAY THE DRUG IS NEW TO ME BUT MY DOCTOR SAID THAT IT HAS BEEN AVAILABLE IN THE UK FOR SEVERAL YEARS. STEVE






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no FDA approval doesn't make it BAD
Re: Re: NEW DRUG TO ME !! -- rita Top of Thread Archive
Posted by: Delaine Inman in TN ®

06/17/2003, 18:05:40
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I am taking Piracetam which is not FDA approved and my neurologist and another who is the head of the movement disorder clinic at Vanderbilt says it is used widely in other countries. No drug company will put the money behind it to go through the FDA approval process because they don't believe there are enough people who need it to warrant the investment. He says it works on the brain in a similar way as Klonopin. It has made a big difference in making everything else.......Botox and Klonopin work better. I am better than I have been in 4 years......better than after having the surgery. I am going to do at the least volunteer work at the local Nursing Program as a tutor and was offered a clinical instructor's job yesterday despite the fact I was up front and honest about how unpredictable this BEB can be......she still wanted me and I am going to think about it. I wanted to see how I did as volunteer and then try working, but we shall see. We have an Orphan syndrome and use Orphan drugs ........which Botox was....don't know now that cosmetic reasons has made it more in demand and profitable. Many good drugs are not FDA approved.





Modified by Delaine Inman in TN at Tue, Jun 17, 2003, 18:55:55

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Sold under a different name ...
Re: NEW DRUG TO ME !! -- Steve-In-Tennessee Top of Thread Archive
Posted by: Moderator-JB ®

06/17/2003, 15:00:02
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Steve,

This drug is used in the U.S. for Dystonia.
One of my doctor's has suggested it, however
I am allergic to some of the components.

Do an Internet search on: Nitoman.


Take care and know that you are never alone.
We are all but a keystroke away.

Judy
blkmn36@earthlink.net






Modified by Moderator-JB at Tue, Jun 17, 2003, 15:07:58

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