[Throne King]

Hello fellow IBS sufferers, I am a 42 yr.old male.I've had severe IBS symptoms for 5 yrs.This has been at least 50% of my reason for being on disability.(Five bad discs in my back and other chronic pain make up the rest) In five years I have seen at least a dozen doctors for the IBS.Of the numerous medications we tried,LOTRONEX was the only thing that worked for me.I found that I could get excellent results on half the dose.One Lotronex pill in the morning and I was starting to get my life back.Now it's time to start over. When I heard the news the other evening about Lotronex getting pulled from the market,I rushed out and bought a two month supply.This wasn't the best idea because now I'm afraid to keep taking it. My doctor called yesterday,told me to stop taking it,and gave me a prescription for Donnatal.(Belladonna/Phenobarb)Does anyone have any experience with this one?I'm hoping this one works because 60 Donnatal cost me $8.97,while 60 Lotronex was $147.50. I've tried Bentyl,Questran,Immodium etc.Also a dozen anti-depressants and one medication for schizophrenics(it made me sicker).Lotronex was saving my life,without side effects, and now what?------------------King of the Throne

 

[BQ]

Your Royal Highness, I took Donnatal way back in the early 80's for a bout of gastritis. It did help with that pain. However once I was diagnosed with IBS, the Dr. gave me Bentyl telling me it was better than the Donnatal for the D. Eventually that didn't work either. I was on Lotronex and am conserving my supply. I talked to my Dr. when he called to tell me about the Lotronex withdrawal, I asked him what will I do as an alternative, Immodium? He said he knew that caused me severe cramping and would rather not have me use that. I asked him what about the Immodium in conjunction with an anti-spasmodic like Bentyl. He said that might work. I guess we will have to wait and see. I'm going to continue to take the small dose of Lotronex until I run out. Then I guess it will be back to trying this & that until something works or they come up with a new drug that can really help us and not scare the FDA. Well, I wish you luck and hope the above gave you some info anyway. BQ

 

[Throne King]

Well thanks BQ, I am not royalty,just self appointed King.

This is not good news for me.Bentyl was the first thing I tried.It didn't work. I've seen some posts about taking half a tablet of Lotronex.If I can do that,I will have a six month supply.I'm also thinking of skipping one day in between,which would make it a year's supply. I just spoke to Glaxo on the phone,I can get a refund if I want it($200 worth).Also,there were'nt any encouraging words about the drug coming back.I can't help but feel some patients were prescribed Lotronex incorrectly for constipation predominant IBS.------------------King of the Throne

 

[Guest]

I was taking lotronex for a little over a month. I started causing ab pain for me. Its hard to explain, but it was a different type of pain then I got from IBS(D). I now have Donnatol, but only on an as needed basis. I try not to take it unless I absolutely have to, the whole phenobarbital thing scares me. It does work, but it definitely makes me feel "out of it". I agree with you, Lotronexwas probably poorly diagnosed for some people. I feel like Doctors sometimes play russian roulette with meds. PS Are you an Elvis fan? Cool name!

 

[Guest]

I used Donnatal prior to Lotronex. It doesn't work like Lotronex. Made me very drowsy so I could only take it at night. Am also taking Citrucel with Lotronex. Not sure what I'm going to do now.

 

[jobabe56]

Throne King, I was on donnatal several years ago. It did nothing for me. I was also on librax with no luck. Lotronex was it for me at only 1/2 tab daily thanks to my dr. at the first sign of constipation he promptly cut my dosage.I also take Klonapin for nerve pain and oddly enough it seems to help with my IBS. Good Luck hang in there. ------------------

 

[Guest]

Hi guys,I've been on bentyl, donnatal, lomotil, finally lotronex. Guess which one was the only thing that really helped??? Yep - Lotronex. I reduced the dosage to 1/2 a tablet per day (or even every other day when I became slightly *C*). I started with two per day, but it was wayyyyyyyy too much. I was able to get a refill on Thursday but after reading Faith's posting on the BB (under Jeff's posting re: Glaxo pulling Lotronex...) I'm sort of afraid to keep taking it. I'm not an alarmist, but to read that Faith seemed fine on Friday, even saw her doctor and ended up in such distress on Saturday has me worried. And yet, the thought of going back to the way I was before the Lotronex makes me just as afraid. It'll mean barely eating (why eat when even herb tea and toast can send me running for the bathroom numerous times and in great pain?) It'll mean skipping lunch completely on workdays that I have meetings scheduled for the afternoon. Who wants to keep running out of a meeting while all eyes follow you wondering "what's wrong with her???" Also, there's the lovely grey color that my complexion takes on along with the sometimes profuse prespiration. Oh boy, can't wait!!!!! I hope some other alternative will be available soon!!!! In the meantime, I do think I'll risk using my Lotronex and just be on constant alert for problems.Good luck everyone!

 

[Throne King]

Well it's day 3 for Donnatal and the "D"is coming back in full force.My heiny burns like it's on fire,probably because I've taken Tylenol and the liver is rebelling.Does anyone else have"the fire down below"?I see no use in taking the Donnatal,unless I just want to sleep all day. Life is really going to suck now.I had two good months this year,due to Lotronex. However,maybe it's a good thing we were warned in time about the bad effects of the drug.With what Faith had to say,it looks like we were all due for an emergency any time.I did have some fleeting intense stabbing pains in the belly.Anyone else? I guess I'll be moving my 'puter back into the potty now.Oh geez.

------------------King of the Throne

 

[BQ]

Your Majesty, YOU ARE NOT ALONE. MANY SUBJECTS INCLUDING YOURS TRULY HAVE BEEN SPENDING MUCH TIME ON THE THRONE! PUT SOME CORTISONE ON THY ROYAL BUM. BQ

 

[dc]

I tried taking latronex but it had bad results for me. I had terrible constipation and cramping. The pain was worst than it was before. I am type D and my worst problem that I deal with is the pain associated with this. Right now I'm taking a combination of bentyl and donnatel. I take the bentyl daily and the donnatel as needed. I believe though that the donnatel is more for the pain and not to stop the d. If I'm in really bad pain I usually take 2 donnatel and it helps ease the pain but the combination of these two drugs haven't cured me or even come close. Some days are just better than others.