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Discussion Starter · #1 ·
i = 21-year-old male saved by lotronex. my future looks bleak, post-lotronex. come on, people, let's do something about this.if you haven't yet called glaxo, call. i spoke with someone very friendly and helpful this morning. he said they are recording all positive feedback. 1-800-825-5249he also gave me the e-mail addresses of the FDA commissioner and Dir. of consumer research:JHenney###oc.fda.govWoodcockJ###cder.fda.govi've sent a number of e-mails to public citizen, ralph nader's group that lobbied against lotronex: hrg1###citizen.organd, finally, the number for the attorneys involved in trying to get compensation for people with lotronex-related injuries is 1-800-838-0800. i think it's important that they know that the true victims of this decision are the people who will have to live on with this disease -- how about some compensation for that?good luck to everybody, especially all the males out there who seem to get ignored in all this. please feel free to e-mail me!best,ben harveybch###brown.edu
 
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When I called Glaxo this morning, they were very nice as well. When I asked them if the company thought Lotronex would be back on the market any time in the future - their answer was "No. The FDA is making it too difficult for them to bring it back."Just curious, everything I've read says that Lotronex only works for _women_. This may explain why men are ignored in this case.
 

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Be careful ben, don't use the lawyer term, makes people kinda edgy, I got totally browbeaten from some on this bb when I mentioned talking to a lawyer to see what can be done. Obviously people misunderstood what I meant so I wrote another post to clarify. but just be careful.Good luck and let us know what happensSandi
 
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Sandi - I think you've misunderstood Ben's post. He's not talking about suing for damages resulting from _taking_ Lotronex, he's talking about a hypothetical suit for the misery some people will again suffer by _not_ being able to take Lotronex.You were "jumped on" in your other post, because you were personally commenting about suing without having suffered any negative side effects from Lotronex. That's probably one of the reasons Glaxo Wellcome took Lotronex off the market - to ward off a number of law suits by people who have not have any problems with the drug.
 

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Sandi,I did not read your previous post, so I'm really not sure what you said to get you bashed. But I felt so enraged when I read Dr. Wolfe's (from Nader's group) comment that Lotronex was minimally helpful and about as helpful as a placebo, that I know I would be willing to contribute to a legal fund to get this medication back to the people who need it. I've emailed Dr. Woodcock at the FDA, and Nader's group, next will be Glaxo. But I do agree that Glaxo was right in not agreeing to the FDA's only conditions that it be used for just a few women, who were seeing specialists, and for a limited time. In these days of managed health care, I would have a hard time getting a referral to a gastro doc. So again, women and the poor and middle class are left out in getting the best medical treatment available.
------------------MunchkinIBS-D
 
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And, if only certain women were allowed to take Lotronex, most insurance companies wouldn't pay for it. They would probably consider it "experimental" as those certain women might be considered "guinea pigs" by the insurance companies.
 
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SLBEL 3 - I think you'd make more friends than "enemies" if you weren't so rude in the way you come across. You mentioned attorneys - and lawsuits. I think very clearly - I don't have to restate my ideas/opinions to get my point across. I am here to get and share as much information on IBS as I can. I'm not here to bicker or be rude to anyone. I respect others opinions, but I don't believe in frivilous lawsuits - and I'm not the only one that read that from your post, so I'm not alone.
 

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Well zooker, what can I say, obviously you still have it in your head that I want to sue the company. That is so far from the truth, but I don't know what to say to convince you of that so I am not even going to try anymore. Think what you want, do what you want. I'm here to fight for the cause, to fight with anyone else.
 

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SLBEL3I have been reading all your postings off and on all day. Maybe you should go back and read them yourself before suggesting others do. Maybe you need to think before you type instead of suggesting others should.We all come here for support, not rudeness.Everyones opinions are important, but rudeness is not necessary to get a point acrossed.Mary Jo
 
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Something I just did (while I was sitting around doing nothing but whining <g> )... I wrote a letter to my doctor expressing my support for Lotronex and explaining how much it helped me. I told him that if the FDA or Glaxo Wellcome surveyed him for commments and examples of patients, that he was free to use my letter and to contact me for further information.I know that my doctor's office was participating in the tests of Lotronex with their patients. I wanted to participate, but my doctor felt that I had IBS bad enough that he wanted me to start taking them immediately, without going through the "hoops" that you had to for the testing. (You had to be off the drug for three months, then take it for three months, and then go off it for another three months - something he didn't want me to do.)Perhaps we could all do this - at least I know my doctor will read it - and will contact me in the future if he needs to do so.
 

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You're not going to get it back on the shelves. Just a perspective from someone who works in the industry...............------------------Fear can hold you prisoner.......hope can set you free.Missycat >^.^<
 

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From a pharmaceutical industry standpoint, once a drug has been witdrawn at the FDA's request due to safety concerns, including deaths attributed to the drug, it won't come back. Now, if Lotronex was a hot seller (and it unfortunately didn't live up to Glaxo's expectations there), I bet the story would have been different. I even imagine it would still be on pharmacy shelves, but with restricted distribution if that were the case. Believe me - I am not trying to purposely be negative; I just have a little inside knowledge of how the pharmaceutical industry works, and unfortunately, we're hoping for something that is a very, very, very long shot. However, I think our efforts are not wasted; Glaxo and the FDA need to hear how debilitating IBS is, and how much a Lotronex is needed. However, if there are any other drug manufacturers out there working on Lotronex-like drugs, please write them also. (Flux may have info on them.) Give them a vote of confidence. Once they see the need, perhaps they'll work a little harder to right some of Glaxo's wrongs in marketing strategy. This will be vital to any Lotronex successor to succeed.------------------Fear can hold you prisoner.......hope can set you free.Missycat >^.^<
 

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Missycat: Thanks for the inside info. I never thought about contacting other drug companies, but you may just have something there. I hope they come up with something soon. I don't want to think about what my life is going to be like again. But there is always hope, and I will continue to do that.
 

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Discussion Starter · #18 ·
this is kind of disturbingly humorous. the same morning i sent e-mails to the FDA expressing my support for lotronex, i realized i had opened a computer virus from a separate e-mail. so, unknowingly, i realized i had sent the same virus to the FDA addresses as well as public citizen!i have subsequently gotten rid of the viruses as well as contacted the people i mistakenly sent the virus to. i find it oddly funny, though, that somehow my anger toward the FDA/public citizen transformed into maliciousness, even though it was unintended.ben (virus-free)bch###brown.edu
 

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Missycat- Any chance that the lotronex might get marketed in a different country? Glaxo says no, but I would think that it might recoup some of it's losses in a country where litigation is not foremost on everyone's mind. Believe me, if I could buy it in Mexico I would be on a plane tomorrow. Do you know anything about the logistics of foreign pharmaceuticals?
 
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Its a shame we can't all organize and protest in front of the FDA building in Washington, DC. I've never publicly protested anything, but this is something I would definitely do!
 
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