[21857]

Hi everyone, I am waiting to see the specialist but my doctor said that he will probably put me on Lotronex, can someone tell me a little bit about it, and their experiences? has it helped?Thanks heaps!!

 

[Kathleen M.]

No personal experience (not the right type of issues to take it), but I was around helping the people who were working to get it back on the market and I know for some people it worked well enough that traveling to D.C in diapers to testify in front of the FDA was something they were willing to do if they could get it back.For some people it makes a huge differnece in controlling IBS-D. For those people you hear a lot of "it gave me my life back" type of stories.It doesn't work for everyone (nothing does). You have to watch out if you get constipated on it, it may not be for you. Rarely someone will get Ischemic Colitis, so any sign of that (like bloody stools) means to stop taking it and get immediate medical attention. It can be serious, but fortunately it is very rare.K.

 

[21857]

Thanks heaps Kathleen for the info..... So you dont think that it is a really positive med to take?

 

[Kathleen M.]

There are risks you need to be aware of, but for some people it is an extremely positive drug to take. For some people it is the only thing that allows them to leave their house and have any sort of life at all, so I think that is positive

I thought I was clear about that. It can be the difference between having a life and never leaving the bathroom for a lot of people. That is why people fought so extremely hard to get it back on the market. So many people finally had a life and had it ripped from them when it was off the market. Usually when a drug is removed they get like 5-10 letters total complaining. With Lotronex they got thousands 1 out of every 100 people who took it wrote to the FDA to get it back. That indicates it really really really works for some people, especially when nothing else ever did.When it works, it can work really really well, but like any drug it doesn't work for everyone, and there are risks. Every treatment is like that. No treatment is 100% totally safe and 100% totally effective. That being said every drug is right for someone even when it isn't right for every single person.K.

 

[14032]

KathleenHope you see this. I was on Lotronex soon after if first came out. It did WONDERS for me, and I was highly upset when it was taken off the market. My symptoms returned: diarhea, gut gurgling, urgency - but no blood. Then in 2004 or so, blood appeared. I had my first colonoscopy and was dx UC. I am now on Asacol.I am also in a UC flare up and desperate, and I am wondering if Lotronex would help me again. It worked sooo well. As a biologist, any comments? Thanks

 

[Kathleen M.]

That is a tough call. In theory would suspect it could help with diarrhea (primarily because a lot of the same antidiarrheals are used to treat diarrhea in both conditions), but I don't know what sort of safety issues there might be. Especially since bleeding is a signal if you are taking it for IBS that you are running into trouble and need immediate medical attention. Eventhough it is a different reason for bleeding it may be something that would be overly risky. I do not know if it has more danger of side effects with UC. I don't think they've actually done those tests so the problem is you'd be an experiment of one without a whole lot of data to predict how it might go.While it might help the diarrhea it wouldn't help the inflamation that is the cause for the UC flare up. So the first direction to go is to get the inflamation under control. Does the doctor know? Sometimes they need to add more medications during a flare up and they should be told when things get flared up anyway.K.

 

[14032]

Kathleen - I am so bad. My GI is in W-S and I'm in the mtns. I called his office month ago and he wants to see me but I don't want to drive two and a half hrs to get there (pls don't lecture me); so I am trying to calm the flare up myself with husbands support. I have some Lotronex and prednisone but I don't dare take them w/o MDs advice; so I have been watching diet and have now figured out that Flax oil can be purgative!!; also I am trying something new: slippery elm enema/suppository. I am winning this battle but it is slow. Even with prednisone, it is slow.The next time I go see my GI who I trust and love dearly, I plan to ask him about Lotronex. So glad you did not poo-poo my idea because now I have nerve to ask him. It really worked.Thanks for responding.

 

[13594]

In the UK; Docs generally use Lomotil when wanting to control D in someone who has UC.I have no idea what the effects of Alosetron (Lotronex) would be in UC. You would be best asking the manufacturer: Glaxosmithkline, if they ever did any trials in patients with UC.Sorry I couldn't be of more help.Best Regards,mr_colt

 

[13594]

Also remember that to perscribe Lotronex; you doc has to be enrolled in their "Lotronex perscribing program." Only docs that are can get the authorisation stickers to put on the perscription sheets.Without those; a pharmacy won't dispense the drug. I suspose if he isn't, he could get a doc who is to PX it based on his analogy.Regards,mr_colt