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Discussion Starter · #1 ·
I have beem lurking at this site for a few weeks, just absorbing the information and getting a feeling for how useful it is for people. I just decided today to pass along my experiences with the clinical study of Alosetron - which will be marketed as Lotronex. I was in the study for a year, from March of 1998 to March 1999. I definitely received the real thing - not the placebo - because I immediately noticed a huge change. At first, I was in more pain than I had been, but inside of two weeks, the pain subsided, and my D had become a thing of the past. I could eat anything! I had been steadily losing weight for about 15 years - not a lot, but enough that I was beginning to become worried. I am 6 feet tall, and I weighed 140lbs. at the beginning of the year-long study. At the end of the study, I had gained 10lbs! My only problem with the drug was that I had some constipation at the dosage I was being given. However, it was worth it to be able to eat, and be social without worry.I saw the posting about sending letters to our elected representatives, and did this. I got two responses from Senator Ben Nighthorse Campbell, the second including a letter from the FDA responding to his inquiries. Of course, they will not release any information about the status of the approval process for Lotronex, but they gave out an address and phone number to contact Glaxo-Wellcome directly:Glaxo-Wellcome, Inc.Five Moore DriveP.O. Box 13398Research Triangle Park, NC 27709919-248-2100I intend to call them today, and will post any information I receive.
 

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Tony ~~Thanks for posting the very positive results you achieved via the Lotronex treatment!How reassuring it is to read that you could eat anything and the dreaded "D" was a thing of the past!Here's hoping and praying that the FDA gives approval for Lotronex to become available to the public next year!
 
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Discussion Starter · #3 ·
Tony-Your positive information made my day! I'm tolerating this IBS at this point with high hopes for the IBS drug of our future. Can't wait to give it a try myself. Thanks for sharing!
 

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Tony, all this is great news. I guess they never tell you what dose you were on? According to DC2, they range from 1 mg. to 5mg!I called that Glaxo-Wellcome number after I too got a letter from the FDA to my congressman. They won't spill the beans yet. Maybe you'll have better luck.
 
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Discussion Starter · #6 ·
Tony,Welcome to the board. Your news is great.......------------------LET'S ALL PRAY FOR A CURE TO THIS IBS SOON!BETTIE
 

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Tony ~~Just one question: You mentioned that you were on Lotronex for one year and then in March of this year your trial testing was done. Now that you've been off Lotronex for over 6 months, how do you feel? Are you managing IBS cold-turkey or do you take any medications? I ask this because I wondered if Lotronex is a medication you would have to take forever to achieve freedom from IBS---or---will this drug "cure" a person of the syndrome?Thanks for your previous positive and encouraging summary report!
 
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Discussion Starter · #8 ·
Tony Read your post with great interest. I only lasted a couple of months on the study due to excessive dryness of the nasal passages as I indicated in my earlier post. Sounds like your only side effect was constipation. Were you able to address this problem? I responded favorably almost immediately, but I am certain that the doseage was increased. I would have to turn in my unused meds at specific intervals. I also took a set of pills each 2x daily. Was this the same for you. Also did they tell you that they were modifying the doseage.Lastly, what information were you provided with at the end of the study. It must have been an interesting experience knowing that you were about to discontinue something that had made a dramatic positive change in your well being. Also, I hope you were treated as well as I was. As I mentioned earlier, for the first time in my life I actually enjoyed going to see the doctor (or research assistant). They were fantastic.Thanks for your post.
 
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Discussion Starter · #9 ·
To everybody who had questions about my previous post: I went to my doctor after the end of the study, and got a prescription for Bentyl, which I am supposed to take 4X daily, but usually only manage to choke down 3. I don't enjoy the buzz from these things, either, but they do seem to have some value. I got no help from the clinical study group at the end of the year.They do nothing but clinicals, and at any time they might be conducting 20 or 30 studies. The doctor who was "running" the study had an office in another part of town, and offered a prescription for Levsin or Levbid, which I tried, but found to be rather useless. I am also doing the calcium and Calm Colon, but don't feel that they are helping significantly. Unfortunately, it seems that Lotronex is not a cure for IBS, but rather a cure for the symptoms, and must be taken continuously, or symptoms will return.On another note, I believe that I can trace my onset of this stuff to a 3-month trip to Africa in 1983. I returned from the trip feeling lethargic, sleepy, and with lots of "stomach" problems which I had never had before. Many visits to the doctor turned up nothing they could pinpoint - parasites, bacteria, virus, etc. I dropped 15lbs in a little over a year, before stabilizing (sort of) at about 145 to 150. Does anyone else believe that they know when or what triggered their IBS? Just curious...
 

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Hi Tony, enjoyed your posts. My IBS was triggered after a nasty food poisining from a pot luck dinner I went to 5 years ago. Not one out of six Doctors will admit to a link to the food poisining and IBS. This I really don't understand. My advice to anyone, is, if you ever have food poisining, insist on a stool sample. They can usually tell what kind of food poisining it is, and treat it right away.
 
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Discussion Starter · #11 ·
To the top for newbies.......------------------LET'S ALL PRAY FOR A CURE TO THIS IBS SOON!BETTIE
 
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