[carolauren]

I just completed the initial interview for a new cilansetron trial in my area. I'd be interested to hear from others who have been in such a trial. I have read old posts in the archives already, but if anyone has further comments about participating in a trial, the drug's effectiveness, etc., it would be greatly appreciated. Also the lady I talked to wasn't the usual person to do the interviews, so she didn't know if I'd have to go off all medications (in general) that I'm on now--I assume I'd have to go off Zofran, but I was wondering about other drugs I take daily, e.g SSRI's.If anyone else is interested in the trial, I can post more details.

 

[jlechien]

Hi Gasgirl,One of the archive posts about Cilansetron that you refer to may have been mine. It's been awhile since I reported on my progress with Cilansetron. While I'm never sure how much information to report, I can tell you that since going on the open-label phase (in January, 2002) I have been almost symptom-free. No 'D', no bloating, no panic-rushes to the bathroom. This stuff works great for me. Once in awhile I have a little nausea right before I eat but it goes away quickly. There is a tendency to constipate so I had to change my diet to include more fiber which I should do anyway. I am currently taking 2mg three times daily. As I had reported earlier, I have never had really severe symptoms, but I've always had 'surprise' visits by Mr. 'D' at the wrong time or very strong urgency. At the 'open-label' phase follow-up visits are every 3 months for one year. I'm not sure what the timetable for approval is, but I'm hoping I can be extended if FDA approval isn't forthcoming. I hope this info helps you. If you have additional questions, I'll try to answer offline. I never took Lotronex so I can make any comparisons, but I suspect that Lotronex was/is more effective for intense or prolonged symptoms. I would have to say that this is the first time I have had sustained relief in over 12 years of IBS. I can't say enough good stuff about Cilansetron. I concluded that for the first 18 weeks I took the placebo because once I started on the open-label, I had relief on the third day. I hope you find what you need with the study and that it offers you relief. Good luck.~bigjon kc

 

[carolauren]

Thanks for replying, bigjon. Yes, I think I read your old post. I just today completed the initial interview for a second cilansetron study which is longer--about 7 months compared to 4 months for the first one, and two randomizations rather than one. They say I am an ideal candidate. And yes, I will have to go off the Zofran, Bentyl, and I'm not sure what else since I haven't looked over the drug list closely yet. My concern is getting through the "run-in" period without those drugs, since my case is quite severe--many bathroom visits with D, bloating, gas, malaise, pain, every day, without drugs. I guess if I end up getting the placebo or cilansetron doesn't help me, I can always wash out, but these are "open-label" trials, and I would like the chance to be on an alternative to Lotronex. Lotronex was wonderful for me at the full dose, but it will be several months before it's available. I also feel insecure about it being yanked again in the future. I see my doctor tomorrow and will ask his opinion on whether I should participate or not.One of the study coordinators said that cilansetron isn't expected to come to market for another couple of years! I hope she's wrong.I'm so glad you've been doing well on it. Thanks again for the update.

 

[KWILLIAM]

I justed started the 1 year study,and it has done wonders for me no D so far ,just been a week.I had the placebo during the trial thankfully it is over now.

 

[carolauren]

kwilliam, how severe were your symptoms before getting (the real) cilansetron?

 

[KWILLIAM]

GASGIRL,When I first had my Colonoscopy and started the 3 month study my symptoms were more less gone for 3 weeks.They told me that this happens alot for some unknown reason to some people after the procedure is done and also the placebo effect had part in it too im sure.After a few weeks i went back to my old self some days better than others.I found out for sure i had the Placebo when i let a pill dissolve in my mouth and it had a sweet taste.I know someone else that is in the study and his was very bitter he said and he had c instead of d.Now that i am the open study it has been as good as lotronex for me.

 

[carolauren]

Thanks for the reply, kwilliam.I saw my doctor today and told him about the studies. He said that because they are double-blind placebo trials he thought they are a bad idea for me, since my case is severe. He felt that only if I had nothing else that worked for me (I'm controlling my worst symptoms with Zofran) would it be worth it. I agree with him. He is signing up with Glaxo to give me Lotronex again when it comes back, so I'm going to sit tight and wait for that. I'm too sick without drugs to be a guinea pig.Glad that the cilansetron is working out for you!P.S. I wish I had had a little remission after my colonoscopy, no such luck.

 

[leboisson1]

HiI have just started on the cilansetron pills. I let one pill dissolve on my tongue and it was bitter and tasted like medicine. I haven't noticed too much just yet, only 3 days so far. It was a task to do the trial though, I have to call in everynight. But I would be interested to know if others have tasted the pill on their tongue. I wouldnt' be surprised at all if I got the placebo twice, i have that kind of luck. But I would be interested to know how others are doing on the medicine. I was also happy to hear that they are doing an open label for the drug. my study place didnt know if they would do that or not.