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Title: Cat and Roxy need Info NOW....... Post by Mr.Happy on Jan 27th, 2004, 9:31am Cat and Roxy are meeting with the all docs at New England Center for Headache today (1/27/04), and attending a luncheon sponsored by Glaxo. This may be a bigger shot in the arm for all of us than we can imagine. They only had a few minutes to talk on the fone, and are due at NECH in minutes. Hope I got the request for info translated properly. If you use, have used, or would like to use RELPAX, please list your name NOW. The same goes for Neurontin. The info is needed YESTERDAY, so throw your name in the hat if you have used or would like to use either of these meds. Don't be shy. They'll try and give us more info on the meeting ASAP. They're already late (heh), & will be dealing with lousy snow/ice weather over then next few days. The hotel has highspeed access in each room, but they haven't even had time to unwind a cable or turn on a laptop. Again, if you use/have used/would use Relpax or Neurontin, please reply now. Get the word out to as many as possible. Cat and Roxy will fill us in with details as soon as they get the chance. Don't shoot the messenger, RJ |
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Title: Re: Cat and Roxy need Info NOW....... Post by Mastifflvr28 on Jan 27th, 2004, 9:50am BANG HAPP! If my current meds ever fail me, I WOULD want to use Relpax. Thanks, Mast |
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Title: Re: Cat and Roxy need Info NOW....... Post by Brian_Y on Jan 27th, 2004, 9:55am I have used Relpax. |
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Title: Re: Cat and Roxy need Info NOW....... Post by Sean_C on Jan 27th, 2004, 9:56am Cat & Rox, I don't use it........however if needed I would definately give it a try....please include me. I'll leave my info on your CH .com e-mail Great job guys........your making things happen [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] Sean |
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Title: Re: Cat and Roxy need Info NOW....... Post by JDH on Jan 27th, 2004, 9:58am I use Neurontin for nerve pain BUT not for ch's. Think I'll pass on the Relpax unless like Mast said all other meds fail. Jim |
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Title: Re: Cat and Roxy need Info NOW....... Post by aprilbee on Jan 27th, 2004, 10:01am I've used both! And still do. |
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Title: Re: Cat and Roxy need Info NOW....... Post by Jackie on Jan 27th, 2004, 10:34am Blake has never used either of these drugs. Would be willing to try the Relpax. Would not be willing to try the Neurontin because of the other drugs he is currently taking. Jacks 8) |
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Title: Re: Cat and Roxy need Info NOW....... Post by Kirk on Jan 27th, 2004, 11:14am Haven't used either one. Willing to try though. TTFN |
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Title: Re: Cat and Roxy need Info NOW....... Post by Elaine on Jan 27th, 2004, 11:17am put my name on the list! |
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Title: Re: Cat and Roxy need Info NOW....... Post by AlienSpaceBabe on Jan 27th, 2004, 11:23am Used neurontin. Want to try Relpax. |
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Title: Re: Cat and Roxy need Info NOW....... Post by Cerberus on Jan 27th, 2004, 12:44pm What the Hell Toss ME in as well, never tried em but if the current regimen stops being effective, might as well give it a shot. Ramon |
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Title: Re: Cat and Roxy need Info NOW....... Post by stevegeebe on Jan 27th, 2004, 1:35pm I used Neurontin (1800 mg/day), Cafergot and Verapamil to kill a 6 month cycle that was not being touched with triptans. I will use it again. Have not tried Relpax. Would try it to kill the beast. Steve G |
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Title: me Post by rumplestiltskin on Jan 27th, 2004, 1:48pm Repax ...too slow Neurontin...results unremarkable. It was added to my Verapamil when it became ineffective and CH continued unabated. I went into regular remission and stopped both. den PS: Those empowering the pharmacudical industry in the US will rot in a special hell some day. |
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Title: Re: Cat and Roxy need Info NOW....... Post by Karla on Jan 27th, 2004, 1:53pm Used neurontin. Want to try Relpax. |
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Title: Re: Cat and Roxy need Info NOW....... Post by thomas on Jan 27th, 2004, 2:42pm Haven't used either, would be open to trying both if my current cocktail should fail........ |
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Title: Re: Cat and Roxy need Info NOW....... Post by Gena on Jan 27th, 2004, 4:01pm put me onthe list |
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Title: Re: Cat and Roxy need Info NOW....... Post by Jayne on Jan 27th, 2004, 4:15pm My lithium is doing the trick for now, but would be willing for the relpax |
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Title: Re: Cat and Roxy need Info NOW....... Post by catlind on Jan 27th, 2004, 6:05pm Quick update on the reason for needing the info. We have successfully conveyed the $$$$$ amounts that us CH'ers use on meds. Currently, as you all know, Imitrex (by Glaxo) is the only labeled triptan for CH. Pfizer (who makes Neurontin and Relpax rather enjoys giving money to organizations for education and research. If we can show them (like we did with Glaxo today) the POTENTIAL earning power of their drugs for CH, they will be far more likely to give OUCH grant money. If we can also show them that the earning potential is there with CH'ers, they would be more likely to initial clinical trials for labeling and new 'formulations' with their triptan. Sooooooooo much accomplished it's mind reeling. We'll be updating as soon as we can, but we have a fair amount of work to do right now so know that there is lots that's happened, we just have to get it all organized for an update. Cat |
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Title: Re: Cat and Roxy need Info NOW....... Post by jonny on Jan 27th, 2004, 6:18pm ROCK ON, LADIES ;;D ...............................jonny |
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Title: Re: Cat and Roxy need Info NOW....... Post by Prense on Jan 27th, 2004, 7:15pm I'll try anything... Chris |
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Title: Re: Cat and Roxy need Info NOW....... Post by maggie_may on Jan 27th, 2004, 8:45pm Not sure if this would be any help now, but I've never tried either one of these. Doing just fine with my meds now. Don't know if I'd be willing to try them - don't know enough about them. maggie |
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Title: Re: Cat and Roxy need Info NOW....... Post by Woobie on Jan 27th, 2004, 8:52pm on 01/27/04 at 18:18:47, jonny wrote:
DITTO!!!!!! |
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Title: Re: Cat and Roxy need Info NOW....... Post by BlueMeanie on Jan 27th, 2004, 9:00pm Sounds like you ladies are doing a hellofa good job. I'll try anything new that may work. The more ammo the better. |
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Title: Re: Cat and Roxy need Info NOW....... Post by athos on Jan 27th, 2004, 9:57pm Yes please include me as well Great stuff guys |
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Title: Re: Cat and Roxy need Info NOW....... Post by Callico_Kid on Jan 27th, 2004, 11:39pm Have used neither, but would be interested in trying them. Thanks for the awesome job you are doing for us. Jerry |
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Title: Re: Cat and Roxy need Info NOW....... Post by Dave_Emond on Jan 28th, 2004, 12:24am Have tried Neurontin Haven't heard of Replax, but would be willing. Anything else at all we can do for you, just let us know! Thanks gals, glad you're safe, Dave |
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Title: Re: Cat and Roxy need Info NOW....... Post by fubar on Jan 28th, 2004, 12:25am I would be a likely customer for Relpax if my clusters returned in full force and my insurance didn't classify it as 'experimental' as they do almost any newly labeled med. jerks. |
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Title: Re: Cat and Roxy need Info NOW....... Post by Renee on Jan 28th, 2004, 11:05am I've tried Neurontin, but it was no help and.....was of no good unless I wanted to stay asleep ALL THE TIME! Have never used Relpax. WAY TO GO LADIES!!!! renee |
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