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Lotronex follow-up
      #365379 - 07/02/11 08:47 AM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

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.



--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Re: Lotronex follow-up new
      #365529 - 07/15/11 06:34 AM
capricorn1942

Reged: 10/06/03
Posts: 248


I am surprised at your lotronex usage. My gastro took me off of it when I got constipated for just 1 day. I was glad to get off of this dangerous drug.

Cheers.

--------------------
ibs-d (pseudo)with pain and bloating

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Re: Lotronex follow-up new
      #365598 - 07/22/11 06:20 AM
Sandyg

Reged: 09/13/04
Posts: 403


Hi,

I was interested in reading your post because I took take Lotronex. I have been on it for about a year. Although my IBS-D wasn't as bad as I've read by some here, it was limiting my day to day life. Since I work from home, work issues weren't a problem. But...going out with my kids somewhere, vacations like Disney Would would be enough to send my anxiety factor through the roof(waiting in line, having to go to the bathroom!) The thing I've found is at first it did make me a bit C and I had to learn to balance more fiber in my diet. (more IF) Now, I take 1 mg a day but thinking of splitting the dose as I'm very stable. I'm pretty normal but don't always go in the morning and it's hard to predict when I'll go. The thing is with Lotronex, I NEVER have D. The urgency issues are GONE and that is a big factor with me. Because I don't have those issues, the anxiety that would play off my IBS D is gone. I hope not to be on it forever, in fact am going to see my gastro guy soon to ask him about every other day or even a lower dose. I too had a colonoscpy last year and everything was fine.

I agree with you, Lotronex is a good thing if you feel that your IBS-D has compromised your life enough and nothing else works. I had tried Immodium, Lomotil and a anti-spasm which didn't work as well. They treated the symptoms but Lotronex changed the whole way my body responds to food/stress. I am still careful with what I eat but if I do happen to slip up, I don't pay for it for days like before.
sandy

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Re: Lotronex follow-up new
      #365599 - 07/22/11 06:28 AM
Sandyg

Reged: 09/13/04
Posts: 403


Sand...just to follow-up to your post. Blame this on perimenopause brain, I realized that you posted 2 years ago about when you first started on Lotronex the same time I did. It's been two years rather than one. (time flies) I do remember those posts and I guess it was good to follow-up anyway!

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Re: Lotronex follow-up new
      #365619 - 07/25/11 07:24 AM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

Ironically, shortly after I posted this I went into a terrible spell of IBS-D. It's probably because I had to take antibiotics for bronchitis. I've gone back to the Lotronex and am finding that taking .125mg every 3 days seems to be working well. I think your advice about finding a balance with more fiber is excellent and I'm going to work on that.

I'm really glad Lotronex is working so well for you. It is amazing to actually *feel* the change in how my gut reacts to stress that would have sent it over the edge without the Lotronex. And this is so true:

Quote:

The urgency issues are GONE and that is a big factor with me. Because I don't have those issues, the anxiety that would play off my IBS D is gone.




I could feel myself slipping back into "stay home, don't go out" mode as my IBS flared and my anxiety over it meant the stress was overriding the relief I got from more careful eating. I don't want that and am glad the Lotronex can help with it.

Take care.

--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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