Irritable Bowel Syndrome Message Boards

In April of last year, I posted about my success with Lotronex; you can read that post here . I wanted to do a follow-up because things have changed and I want to make clear what I've found for myself.

First, Lotronex was a miracle for me. As I explained, it took care of the anxiety portion of my IBS that was left over after EFI took care of the food part. However, I am no longer taking it (although I still have some as an emergency stash). Two things happened.

First, the Lotronex became increasingly constipating. When I first started it, giving my body a day or two without it would ease the constipation. Gradually it took longer and longer for me to become unconstipated after not taking it.

Second, I started having tummy aches. Very mild, never lasted long, but they were a new kind of ache for me and given the long, long list of warnings for Lotronex, I got more and more nervous about them.

I have had a colonoscopy (regularly scheduled) since I quit taking the Lotronex and there is no damage. However, my gut is definitely different. I believe I am more properly classified as IBS-A these days, rather than IBS-D. This is very annoying because the drugs that help D (like Imodium) make the C scary-bad. And the drugs that help C (like Miralax) make the D much worse. Luckily, the EFI approach still works although I'm still struggling to find the appropriate level of IF - when I was just D, I could pretty much skip IF altogether if I wanted to. Not healthy, I know, but it worked.

For me, the bottom line on Lotronex is:

- It does work. If your IBS-D is limiting your life and EFI has not done enough to change that, I think it's worth a try. If I were, say, commuting into work every day via subway I'd probably have put more time and effort into learning how to deal with the side-effects and the possible problems. And the miracle part is: with Lotronex, getting on a subway would, in fact, be possible for me.

- Start with a super-low dosage. My doctor prescribed 0.5 mg tables and the recommended dosage was one or two a day. I tried one the first time and was constipated for close to a week. I was eventually taking 0.125 mg a day (cutting the tablet into fourths) and not taking even that every day and even that became too much. If I were taking Lotronex for the first time, I'd try 0.125 mg once and see what happened. (As I said in my other post, I read about someone on the Internet who was taking 0.25 mg a week and doing well.)

- If you decide to try it, ask your doctor for the smallest amount he can prescribe. Ideally, you'd like maybe 5 tablets but I don't know if it's possible to buy less than 30. This stuff is hideously expensive and it does have an expiration date (although I never know how seriously to take those on stuff like this).

Overall, I'm glad I tried it. I know that if my IBS-D gets horrible or if I ever *have* to do something despite a bad IBS-D flare, it will work, no question about it. But it was not the miraculous, "take this pill and never think about IBS again", cure I hoped it would be.

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