[bluejay]

There was a report tonight on NBC Nightly News about the "7 deadly drugs" withdrawn from the market since 1993. Lotronex was second on the list, and as you can imagine the piece made the FDA look pretty bad. They interviewed a former investigator for the FDA who claimed that he had been asked by his superiors to remove statements from his reports such as "I do not think this drug should be approved". They interviewed someone from Public Citizen who came off as the knight in shining armor, and Janet Woodcock of the FDA who did well defending the FDA.Tom Brokaw said that tomorrow night they'll look at one of the 7 drugs in more detail, perhaps it will be Lotronex.It makes me believe that there's very little hope for bringing Lotronex back on the market when mainstream news like NBC Nightly News does a piece like this.The good news, perhaps this is the first time that the words "Irritable Bowel Syndrome" have appeared on national news, right next to Tom Brokaw's head.

 

[kcarbs]

I saw this too and the part that made me angry was when they listed the 7 drugs and then put in big letters. These seven drugs are responsible for over 1000 deaths. Hello...I don't know how many were killed by the others....but there were no where near that many with Lotronex. Why is Lotronex even on that list if it is only responsible for a handful of deaths? It just makes getting it back even harder because now millions of people have seen its name and think that it has killed 1000 people. It was nice however that any news station even said IBS. Have to start somewhere I guess...

 

[Maureen Kearon]

HI,I was in the study for lotronex with glaxo for mnths I feel if lotronex caused even one death it should be pulled,people in this country should be glad someone is watching out for these drugs that are not safe.

 

[Jeffrey Roberts]

Maureen I believe what you are suggesting is that the FDA recommend the pulling of such things as:

• aspirin
• ibuprofen
• vioxx
• viagra

Just because you saw it on NBC news doesn't make it any more newsworthy or accurate.I'm sorry if that comes across as rather blunt but this kind of sensationalized news reporting makes me sick.Jeff[This message has been edited by Jeffrey Roberts (edited 01-08-2001).]

 

[bobk]

I wanted to say that if you pull a drug because there is one died then there will never be any new drugs come out at all. I will say that if you have a large group of people take a drug you will always have someone get sick or died from it because you have people with different health problems.I know one of my friends was give the drug and she is d and c type ibs. I know that she should have never been given the drug at all. It could be that Dr.s should have been more informed on who should be given this drug and that could be the reason for the dieds and other problems. I STILL SAY THAT THERE WILL NOT BE ANY DRUG THAT WILL EVERY BE RISK FREE. If I take penicillin I will died from it because when I was about 2 I almost did so does that mean that we should pull penicillin from all the drug stores. I say that when you take a drug you are taking some risk and it could kill you. I wonder when people get drugs do thay always look at what drug you are not allowed to take with them. I got a drug today that you are not allowed to take Vitamins or Calcium with. Who knows it the person who died was taking some other drug for D problems they did not tell the Dr. about it.I'm sad that 5 to 10 people died from this drug and other people had other problems with this drug.I still think that this drug is safe and if you would have looked at my blood counts before and after you would see why I say that. I could eat a lot more fruit that I could not eat before. I tried everything before taking this drug but it is the only think that worked for me.

 

[amalo1113]

I'd like to point out that even my doctor said that she felt Celebrax was more dangerous than Lotronex and more people have died as a result of taking it. She couldn't understand why Lotronex was singled out. I think we need more public awareness of what IBS can do to peoples lives. Just because it is not life threathening does not mean it is harmless. Just ask any of us!Anna

 

[Guest]

I, too saw the report and will watching all week to see what they have to say about Lotronex. After the recall I saw my doctor and she told me that her drug rep said that too many doctors gave the drug to the wrong people; "little old ladies with sonstipation"! As my doctor said," if you give diabetic drug to a non-diabetic it can kill them". I still have hope that we will get Lotonex or a new version of it back, but how long will it take? Remember when the weight loss drug was recalled and they quickly brought a "new" drug back to market?! I was very amazed when I read the letter from Dr. Janet Woodcock-she said that the FDA suggested to Glaxo that a restricted distribution program was an option...why didn't Glaxo go for it?

 

[Guest]

I was looking at some old posts on this bulletin board. There was a long thread one person stated to the effect that---------------------------------------------I have been on Lotronex for about a week now and my constipation is no better I think I'll increase the dosage and see what happens.---------------------------------------------This is clearly part of the problem, even people who should know better don't. Doctors and patients alike.

 

[laure1122]

Please write to NBC Nightly news at:Nightly###NBC.com and express your concern over this one-sided story. Ask them to tell both sides of the story. Somebody out there has to listen to us, eventually.

 

[Guest]

Laure1122:I took your suggestion and wrote to them. Maybe we'll see something positive about lotronex eventually. All we can do is keep trying to get the word out that it's helped many more people than it's hurt.

 

[Jeffrey Roberts]

This is the link for NBC's report "Is the FDA�s fast track too fast?": http://www.msnbc.com/news/513319.asp

 

[Guest]

Jeff,I'd like to post a copy of my e-mail to Nightly###NBC.com, but I don't want to retype it. I can't seem to copy from an e-mail and paste it into this reply post.I copied FDA & Glaxo on that e-mail and received a response from each of them today. Didnt' seem like a canned response like I previously have received, although you can never tell. If you tell me how to copy and paste in a reply post, I post them.

 

[trbell]

One Day at a Time. You could join the lotronex action group email list and forward you letter and replies to that list.tom

 

[Guest]

Tom:I've already joined the group when it was first established.And I posted a copy of my letter to Nightly###nbc.com by cc:ing Lotronex###egroups.com. I also posted a copy of the e-mails I received from both Glaxo and the FDA as I cc:ed them also on my e-mail to NBC Nightly News.