Lotronex (alosetron hydrochloride) is one of the new breed of medications for IBS, and was introduced in the United States in 2000. It is only available on prescription. Lotronex is a selective 5-HT3 receptor antagonist, which means that it works on neurons in the digestive tract, blocking the action of serotonin in the gut and decreasing motility. The decreased motility helps to treat diarrhea. It should not be used by constipation sufferers; the equivalent medication for IBS-C is Zelnorm. It comes in tablet form.
Lotronex side effects
The most common side effects of Lotronex are nausea, mild stomach discomfort and stomach pain.
Despite its initial success, Lotronex was withdrawn from use when reports started to come in about patients who had been suffering from ischemic colitis, a potentially fatal condition where the blood flow to parts of the intestines is reduced. Some users also suffered from severe constipation as a result of taking Lotronex.
After a fight from many IBS patients, in 2002 Lotronex was once again made available in the United States. The US remains the only country where Lotronex has been reintroduced. It continues to help many patients. In 2005 a new, lower starting dose of 0.5mg twice per day was introduced. This lower starting dose was introduced to reduce the rate of constipation in patients taking Lotronex.
As I understand it at the moment, Lotronex can only be prescribed by US doctors who have signed up to the prescribing program run by GlaxoSmithKline (the drug's manufacturers). The prescribing program exists to ensure that the drug is prescribed safely and only to those who genuinely fulfill its criteria. Doctors can enroll by visiting the Lotronex website. Although Lotronex was originally designed for use in women with IBS, it is now also being prescribed to some male sufferers.
How successful is Lotronex in clinical trials?
A study published in the American Journal of Gastroenterology in 2004 used a placebo-controlled trial to look at the long-term effects of Lotronex on women with severe diarrhea-predominant IBS.
Patients were given wither 1mg of Lotronex twice daily or a placebo twice daily for a period of 48 weeks. It was found that the Lotronex patients had significantly greater relief of pain/discomfort and urgency compared with the placebo patients. These results were maintained throughout the treatment. No serious side effects or incidents of ischemic colitis were reported.
A study published in the American Journal of Gastroenterology in 2005 used a double blind, placebo-controlled trial to assess the effects of Lotronex in men with diarrhea-predominant IBS. Researchers recruited 662 men, half of whom received Lotronex in varying dosages, and half of whom received the placebo, for 12 weeks.
Patients who had been given Lotronex at a dose of 1mg twice daily reported 53% rates of relief in terms of urgency and abdominal pain, compared to 40% in the placebo group. All doses of Lotronex resulted in firmer stools, but no significant results were seen in terms of urgency or number of bowel movements. Constipation was the most commonly reported side effect.
I am 27 and have been suffering from IBS-D for many years. It became worse after I had my gallbladder removed about five years ago. I have been taking two or three Imodium pills a day, sometimes more than that.
I finally got insurance and was able to go to the GI and have a colonoscopy and endoscopy and everything came back normal. He started me on chlordiazepoxide and that helped a little. Then he gave me Xifaxan which made it even worse.
He finally prescribed Lotronex and said this was going to be what will work. He didn't want me to try it at first because of the cost. At this point, I am desperate to try anything. Unfortunately, it was going to cost me $600 for a 30-day supply with the savings card for 1mg twice a day. I called and asked if I could try and take 0.5mg once a day to try to cut the cost because I didn't even know if it would work.
I went back to my pharmacy and the pharmacy tech called the number on the back of the savings card. She spoke with the company and they gave her a code to type in for the generic version (my GI put on the prescription that I could take that if it was available) and the code brought it down to...$5. Yes, $5! I literally started crying when she told me that. Finally, something that was going to work. All the years I have been suffering, all the jobs I have lost, all the school that I missed, all the enjoyable moments I couldn't take part in because of me being sick...it was finally going to stop.
I have been on Lotronex (alosetron hydrochloride) for about eight days now. I take 0.5mg every morning and so far it was worked wonders. I am experiencing a little constipation but I think I just don't remember what it's like to not have to go to the bathroom eight times a day. I am still having movements once a day, sometimes every other day. I have not taken any Imodium in about three or four days. I haven't been able to do that in years. I ate a salad for the first time without getting sick last night. I am also taking Raw enzymes with probiotics just to be healthy.
Please everyone go to your pharmacy and asked for them to call the company and get that code for the generic version if you're paying a ridiculous amount of money. If they did it for me, then they can do it for you!
Review by George
My wife suffers from IBS and her life is a living hell. She can't go out. In the past year her doctor prescribed Lotronex and at the time she was working and had insurance. When she first ordered this prescription it seemed to ease her symptoms but now she is retired and on Medicare. At over $2000 for two months' supply it is no longer an option for her. It seems to work to ease her symptoms but now she has reached her donut hole amount and can no longer get this medicine. I could see this price if it were for a life issue but for a quality of life issue you cannot justify this cost.
I would like to know if the manufacturers are in the business of helping people or the business of making someone rich. I hope the company goes bankrupt and all the stockholders need the same medicine and are not able to afford it. If the manufacturer have the right intentions and want to help people rather than make stockholders rich then they should make this medicine more affordable and they would also keep their current patients.
Review by Liliana
I just wanted to share my story about Lotronex. I think this is the solution I have been looking for. I have a very stressful job that requires a lot of international travel and I started suffering from IBS at the age of 28 (I am 31 now). The symptoms started during a business trip (urges, diarrhea, upset stomach, etc) but I didn't know what it was. For three years I have been looking for help and I even had a colonoscopy and endoscopy a few months ago but nothing was found. After several tests and doctors visits I was finally diagnosed with IBS that apparently worsens in the form of urges and diarrhea under stressful circumstances.
A couple of weeks ago I was put on a treatment of Lotronex and some anti-depressants (that actually control anxiety) and although I am only taking half a dose of both my life is finally coming back to normal! I am a lot more relaxed, I've had a lot fewer urge episodes and I can finally say that I feel like I've found a medicine that is actually dealing with my symptoms. Imodium, Pepto and all the medicines I used to take never really made me feel as great as I feel now. I hope my story helps someone out there who is looking for a solution to their IBS problem. I know how much suffering, stress and embarrassment it can bring!
Review by Deanna
I see on here that everyone just hates how expensive Lotronex is. It was expensive for me too at first. But Lotronex has a savings program where you can get a discount card. Basically you only have to pay $15 until you hit $500 of expenses, and then anything over $500 you have to pay the difference. Even if you have no insurance the prescription is about $1300 now so you would still save $500. With my insurance it used to be $300 but it's now only $15. I just thought I would let you know.
Review by Patricia
After suffering from the runs for eight years, I have my life back. I started on 1mg Lotronex twice a day and I am now normal most of time. I am low-income and I have to pay the cost, so I may have to cut the dosage, but it is the best drug I have ever tried! I have had few problems and I feel normal - yay!
Review by Amy
I was diagnosed with IBS-D recently but I have been suffering with it for a little while now. My doctors have tried Bentyl, Donnatal and Imodium of course, but none of them worked. After being admitted to the hospital a few times with abdominal pains and severe diarrhea, a GI doctor decided to do a colonoscopy and an endoscopy, but found nothing. I have also had a small bowel follow-through done as well. The GI doctor decided to try me on Lotronex.
I was somewhat scared to try it because of the side effects, but after what I was going through, I said yes to it. I was only on it for about a week and I started experiencing more severe pain in my stomach and also constipation as well. My doctor told me to stop taking it and to take a laxative. I went through this for three days and now I am back to where I started. If the laxatives didn't work I was going to have to go to the ER! Not for me! I am disappointed that it didn't work and just thought everyone would like to know the other side of the medication as well. Good luck to everyone out there.
Review by Minnie
I have suffered with IBS-D since I was very young (I am now 68). I started on Lotronex in 2000 (1mg) and then it went off the market until 2003 and then my doctor put me back on it. It was the only medication that helped. I also had been put on dicyclomine and Lonox with no success. I had also tried Imodium, but Lotronex is the only thing that works.
I have trouble with the cost but I have to take it. My health insurance only buys it for me for six months per year. I am on Medicare and go in the donut hole very early in the year so most of the year I am paying the full amount for the medicine but I need it. I am a true believer in Lotronex; I just wish I could get my insurance company to believe I need it all year.
Review by Pamela
I am 57 and I was officially diagnosed with IBS at age 21. Since then I have had three thorough work-ups, all saying that everything was normal with the exception of a kinky bowel. I recently traveled to Mayo Clinic and was put on Lotronex. I have been on it for a week and I have not had one episode of diarrhea. So far I feel like a new woman.
I have suffered with diarrhea/severe pain/cramping for far too many years. As I aged I started to have accidents and started to restrict my activities in order to avoid embarrassing situations. I rarely traveled with others in the morning after eating as I knew I would probably end up disrupting the adventure. I have spent far too much of my life in the bathroom or in search of a bathroom. However, I truly feel that this might be a miracle!
Review by WB
I have been an IBS-D sufferer for more than 10 years. The severity of my symptoms has fluctuated, but in the past couple of years I have become almost completely debilitated. For the past six months I have taken a minimum of 10 Imodium a day, which has usually managed to control the diarrhea itself, so I didn't have to worry about accidents, but the intense stomach pain and exhaustion persisted most of the time. Gas and bloating have been such a problem for the last two years that I have had some truly embarrassing episodes. I am a teacher, and I find that in class I am spending a good deal of time trying to sit still so that the horrible pressure inside me doesn't escape in front of the students.
My new doctor has prescribed Lotronex and I have been taking it for three days, 0.5mg twice a day. I have experienced two loose but next-to-normal bowel movements, for which I am thankful. I find myself extremely tired though, and I am having some difficulty concentrating. I wonder if others have experienced this, and if so, whether these effects went away after a time? Since it seems to be at least somewhat effective at this dosage, maybe my doctor would even decrease it. In any case, I am wonderfully encouraged that it seems to be helping me to get my life back.
Review by Melinda
I have used Align, acidophilus and acidophilus pearls with pretty good results. They certainly have helped reduce (and nearly eliminate) gas and bloating. In addition to a daily probiotic I am getting relief with 0.25mg of Lotronex once a week. My doctor initially prescribed 0.5mg twice a day which slowed things down too much. I slowly cut back until I reached a good maintenance dose. I still experience an occasional episode but without the cramping and pain. However, I have pretty much regained a life.
Review by Deb
I call it the IBS shuffle...when no-one can diagnose you, you're told it's all in your head, you're told to calm down and no-one believes the incredible pain and suffering you are going through each and every day of your life.
Four months ago I was diagnosed with diverticulitis and was told my bowel was about to perforate and I needed immediate medical care. I spent two weeks in the hospital on IV antibiotics and had a bowel reconstruction. While it was pure agony I was hopeful that when I recovered all the gastro symptoms would be gone (even though my doctor told me they might still be there if in fact I had IBS in addition to diverticulitis. Unfortunately I pulled the short straw and soon I was back to massive bouts of diarrhea and pain.
To make matters worse, I'm in congestive heart failure and the constant diarrhea and my inability to hold down a sip of water sometimes led to my electrolytes being so off that I had no potassium or magnesium and it was putting me at high risk for a fatal arrhythmia. I swear...I had hit the wall hard and had all but given up.
Luckily while I was in the hospital I met the world's best doctor and he put me on Lotronex and for the first time in more than 15 years, at 47 years old, I finally feel like I am in control of my life. The pain has all but subsided and I go to the bathroom once or twice a day, like a normal and healthy person. I never thought having a normal bowel movement could make anyone this happy. I take 1mg twice a day and it is perfect for me.
I agree that the cost is out of control...I ran out of insurance and went to pick up my prescription for 30 days and I swear it was more than $1,000...I was shocked. Fortunately, I now have insurance (I am self-insured and the $30/month I spend on Lotronex alone makes it worth it).
It's been a long painful battle but I hung in there and never gave up and finally won! I wish all of you out there the best of health and luck with your IBS and I hope Lotronex helps you as much as it did me.
Review by Kathy
After suffering from IBS-D for several years, at 48 years old it literally took over my life. I suffered from panic attacks and only went out of my home to go to my full-time job (I have a very understanding boss). Being a mother of a child involved in sports, my outings to his sporting events were heavily weighed, ie: is there a bathroom, where is it, how many stalls are there, etc. My husband did all the grocery shopping because I had panic attacks just looking at the food. If I went clothes shopping it was only in stores that I knew had a bathroom.
My GI specialist prescribed Lotronex 1mg for me five years ago and my family physician manages my anti-anxiety medication, Paxil CR 25mg. It took me three years but I am finally able to be a human being again. My son has graduated from high school and I was able to attend his graduation from US marine boot camp this past October.
I am grateful, every day, that I am able to function as a human being. I too am very concerned about the increase in cost for this medication (currently it is $545 for 30 1mg tablets). I do have a prescription drug plan that reimburses me for the majority of the cost which I am also very grateful for. I cannot imagine going without Lotronex, and it is my hope for all with IBS-D that this medication will lower in price in the future.
I'm also hoping that the drug manufacturer reads our stories and sees how debilitating and isolating this disease is. You just couldn't make up stories like this and only a person who suffers from severe IBS-D appreciates the gravity of each person's situation and how it has affected their life. Thank you to everyone who has shared a story.
Review by Xylina
I was prescribed a 1mg Lotronex tablet daily but I have found that 1mg weekly has worked wonderfully. This medication has changed my life. For two years I was unable to have a normal life due to constant diarrhea. After several accidents I became isolated to my home. Now I can hold down a job, go to my children's field trips and actually do my own shopping again - the simple things we take for granted. I am thankful to be taking this medication because it has truly given me my life back.
Review by Amy
I have IBS-D and this drug was truly a miracle. Like others, I was afraid to eat out, take trips, etc. Lotronex gave me my life back. I would travel to the ends of the earth if I had to to get my Lotronex. Thankfully, I have a great doc who prescribes it. For IBS-D it is truly a miracle. It's very expensive - thankfully I have insurance. But I feel bad for those who don't and cannot afford it. Everyone deserves to have their life back.
Review by Christine
I was diagnosed with IBS at 16, but it was in the constipation form and didn't bother me at all. They actually stumbled upon my IBS because I had acid reflux which was the main problem. Then a year later it turned to IBS with diarrhea which lasted about eight months before I finally asked the doc what was going on. He told me that IBS can switch back and forth.
Then my IBS got worse and worse with intense cramping, mucus excretions, and less and less control over my bowels (I was only 17 at the time). After going from doctor to doctor with none of them really giving a hoot I finally found the doctor I'm with today. He prescribed Lotronex, which I refer to as the miracle drug. I'm cured as long as I stay on it. If I go off the drug for more than a day there's an immediate repercussion with all my symptoms flooding back.
I'm now 22 and I can live a normal life. I never thought I'd be able to attend college because my IBS became a debilitating disorder, and I'm so glad they allow Lotronex in the US.
Review by Lynn
I am a 57 year-old woman who had stress-related diarrhea for years (not really knowing what it was though). About five years ago I really started to have daily or almost daily diarrhea. It got so that I was afraid to go out to dinner, and travel was a nightmare. I would not eat or drink anything until I arrived at my destination.
A colonoscopy ruled out any other problems. I also was tested for lactose intolerance. I could not even take one sip of juice without triggering an all-day bout of diarrhea, and sometimes even water would trigger it.
I went back to the gastroenterologist and was diagnosed with IBS-D. He prescribed Bentyl 10mg four times a day, as well as Fibercon twice daily. He also told me that I could take as many as eight Imodium per day, which I did almost every day. The IBS became much more manageable (because of the Imodium, I think) but was still not resolved.
After a year on the Bentyl, my doctor agreed that it was not doing the job for me and prescribed Lotronex 1mg per day. It took about a week and a half for it to start working; however, now it works extremely well.
My only issue is the cost. I do not have prescription coverage, and my first month's prescription cost $273. Today I picked up my second month's prescription and the price had gone up to $376. I am fortunate that my husband and I both work, and we have determined that we will make sure we can afford the medication. Is there any reason for the ridiculously high cost and does anyone believe the cost will eventually come down?
As many others have said, Lotronex truly is a miracle drug. I just wish it was more affordable. I am sure there are many people who could benefit from it but simply can't afford it.
Review by Melissa
I have been going to a gastroenterologist for 24 years and I continue to suffer with my IBS. It was only last year when the IBS began to take over my life that I said 'I can't take this anymore'. It was crippling. My doctor gave me information on Lotronex and eventually I decided to go on it. I began to take Lotronex and within a short period of time I began to feel better. I have been on it for almost a year and would highly recommend it to anyone who suffers with IBS.
Review by Carole
I like so many others thought I had found the pot of gold when I first started on Lotronex several years ago. Then, lo and behold, it was pulled. I suffered terribly during those years, and I was thrilled when it was finally brought back. My wonderful gastroenterologist informed me, we did all the paperwork, and I have been much better since then.
However, my doctor has retired - he wrote me a prescription the last day he worked. His diligent nurse, who I adore, stayed on the phone and finally found a doctor in a city 90 miles away who might prescribe it for me in the future. I ration my pills to about half every other day because I don't know if I'm going to get a new prescription now. Wish me luck with the new doctor when I go this month.
I had had IBS-diarrhea for about 40 years - I do have regular colonoscopies and they do not bother me afterwards, as they so some patients. Also, every morning I put Heather's Tummy Fiber in my juice, I drink peppermint tea and use peppermint oil pills. Actually, I'm doing pretty well now.
Review by Julia
I have suffered from IBS for over 20 years. It was not debilitating for me, as I had simply become accustomed to the horrible stomach ache which would occur about 15 minutes after eating, and continue for an hour or more. I also would have stomach aches for no apparent reason several times a day, and of course the continual diarrhea. Luckily for me that was something I gradually learned to make a deal of mind over matter. If I had to hold it, I would, it would just make my stomach ache 100 times worse until I relieved myself.
I figure I had about eight hours out of the day in constant pain. Bathroom visits were maybe 15 to 20 times a day. I have gone through various treatments, including hyoscyamine and Bentyl (which worked a little but made me loopy and unable to function.) Last summer I went in for yet another upper and lower GI and they came up with the same result: shows nothing, you have IBS. Over the last six months or so, my doctor and I had discussed various other treatments that we could try. I tried a couple...and nothing.
I finally got to the point of being so tired of hurting all the time that I hit the internet and researched IBS (which I hadn't done for a couple of years). The last time I did, I think it must have been during the time period that Lotronex was pulled from the market.
I then discovered that there was this medication which might just save my sanity. I went to the Glaxo site, and downloaded all the forms necessary for a doctor to sign up, hoping that I could convince my GP to do it. Imagine my surprise when I found out that he was already registered to prescribe it...then more shock as he looked back through the last few months of notes and found a spot where he noted that Lotronex was going to be the next step!
I started it two weeks ago. If I could even describe the miracle this has been, I would have to be a politician! I have had zero pain (barring one minor stomach discomfort earlier today), I have complete control of my bowels, and I had forgotten the mechanism to make yourself go! For the first time in 20 years, I do not ever snap at someone because I am bent over in pain, or running to the bathroom.
So help me God, if they ever pull this off the market again, I will start a class action suit based purely on the pain and suffering from being forced not to take it. Any idiot in the FDA who has IBS and had used this would have put up a fight. I am well aware of what the dangers are, but it only takes common sense to be aware of any complications happening.
The very rare complications from this med are more than worth the incredible relief I have been given. I truly believe that I will now be able to pursue things I put off for so long, and be a real wife and mother to my children. I cannot thank enough the people who fought to bring this treatment back to the market! Now if I could just figure out how to quit peeing myself when I sneeze!
Review by Sharon
I have been a sufferer of IBS since I was in my 20's, and I am now 61. I was on every imaginable drug for depression and diarrhea, and I was even sent to a shrink because the doctor thought it was all in my head!
I was finally given Lotronex after many tests and after being in the hospital with severe dehydration after 21 straight days of watery stools. I really thought my life was coming to an end, but this new drug saved me from many embarrassing situations and gave me my life back - at least temporarily, because Lotronex was pulled from the American market and I was back to square one!
I also have lupus and fibromyalgia, and to have IBS has been such a handicap - I was let go from my last job because I called in too many times with diarrhea. I even had accidents at work and this was extremely embarrassing.
In 2003 I was part of a study that was testing Lotronex. I was so thankful to be able to have my best friend back. After several months on this study, it was determined that I did have a real need for this miracle drug and my gastroenterologist wrote me a prescription for it.
To make a long story short, I am now taking 1mg twice a day and Lomotil when needed. I am praying that I will return to a better state of health than I have been in. I end this with prayers going out to all of the many woman and men who have IBS and are in need of medical help!
Review by Kim
I have had IBS-D now for over two years. After going to a gastro specialist and having a colonoscopy to rule out anything else, he prescribed Lotronex. I only had to take 0.5 mg at bedtime and the difference was amazing within days. That was eight months ago and it has made a huge difference.
I was still having some pain below my belly button whenever I needed to go, so I started taking Digestive Advantage IBS two months ago and now that is gone. However, I think once you don't make it once or twice you will continue to have the anxiety when you walk out the door, or at least I do. So I have started Zoloft 50mg today in the hope that all of this together will free me from this thing called IBS!
Review by Jerry
I am a 54 year-old male who started having IBS symptoms in 1997 during an abnormally stressful time. The affliction had an unbelievable affect on my life, both personally and professionally. I was constantly worried about being too far from a restroom and the possibility of having an accident. I became depressed and withdrawn and sought medical attention.
After being tested for a variety of things I was diagnosed with diarrhea-predominant IBS and prescribed Lotronex. In a matter of a few days I felt like I had regained the life that I had lost more than a year before. My bowels were absolutely consistent and formed and I no longer suffered the pain and embarrassment of my condition. I even lowered my dose on my own and still maintained a normal life.
When Lotronex was taken off the market and I ran out of medication I was back to my previous misery within a few weeks. My doctor put me on Lomotil and Paxil to try to manage my IBS, with little success. When Lotronex was reintroduced to the market I went to my physician and was told that it could only be prescribed for women. I'm waiting for the day that this medication is made available to the thousands of men that suffer from diarrhea-predominant IBS.
Review by Mary
I have been a diarrhea-type IBS sufferer all my life and I am now 50 years old. When I was a child, my parents took me to a GP who actually prescribed Valium for a seven-year-old because my condition was all in my mind.
As an adult, I sought out other doctors on my own and eventually tried Donnatal to which I had a horrible allergic reaction, Bentyl which put me to sleep, Elavil which helped somewhat but caused a 40-pound weight gain, and massive daily doses of Imodium. Nothing helped in any significant way.
A nutritionist had me eliminate dairy products, red meat, preservatives, wheat, caffeine, vinegar, etc and none of that helped. We could not pinpoint any food triggers except for some reason iced tea mix! My condition does worsen when I'm stressed and I have also been through psychotherapy which has helped with certain situations, but not IBS.
Finally, they came out with Lotronex and I started on it two years ago. I take the maximum prescribed dose of 2mg/day. I heartily recommend it to anyone with this condition. It has changed my life. In two years I have only had about two major bouts of diarrhea, both stress-related. I have been able to travel, accept a job where I must man my post at all times, attend social functions without panic, and generally life a happier life. It has been a Godsend.
I recently lost my health insurance and was applying to Glaxo-Wellcome for mercy care or whatever they call it because I was not about to live without Lotronex and couldn't afford $200-300/month. Luckily I got a job with health benefits and a prescription plan just in time. I urge anyone with this type of IBS to try Lotronex. I would never have believed anything would help me this much, but it has and I pray it will continue. Hang in there to anyone who is suffering with this problem. You are not alone.
Review by Bev
I suffer from IBS-diarrhea and Lotronex is a wonder drug as far as I'm concerned, but it is very expensive. I find myself rationing it at times. Another thing is that you must monitor yourself very carefully so as to not overtake this medicine.
Review by Paula
I have suffered with IBS for at least 15 years, the last year being the worst. I am only 27 and feel like a prisoner in my own home. I have diarrhea-predominant IBS. I wouldn't know what it was like to be constipated or have a normal bowel movement.
I constantly worry about having accidents and being stuck somewhere in traffic and not being able to get to a bathroom in time. I joke around with my friends and family that I have used every public bathroom in this town! It has gotten so bad that I do not go out unless I absolutely have too, but having three children to keep up with makes that kind of hard.
I am very fortunate to have an understanding husband, but it's hard to explain to your kids that you can't take them somewhere because mommy is pooping her brains out. The pain is excruciating and feeling like you could poop and puke at the same time is miserable. There are nights I have laid in bed and just felt like dying.
I am now suffering from panic attacks and depression. My regular doctor wants to put me on an anti-depressant but if I could just get my IBS under control I don't think I would need it. I have lost 65 pounds since having my last baby two years ago. I am not overweight, I diet, exercise regularly, stay away from foods that they say trigger the attacks and still no relief.
The only thing that has helped even somewhat is Imodium. I will sometimes take up to eight of these a day just to get through if I have to be somewhere, which isn't often because I avoid leaving my house if at all possible. There may be some hope in sight for me as I was able to finally after a year and many tests later get my gastroenterologist to prescribe Lotronex. He was hesitant but like I told him the benefits far outweigh the risks.
I had been on it only a few months back in 2000 when they pulled it off the market. I was devastated as were many other IBS sufferers. I just began taking it again last night and am hoping that it will do for me what it did five years ago and I will finally be able to live my life again, especially for my family's sake.
I would love to be able to travel again and take a family vacation. Keep your fingers crossed for me and I'll let you know how it works. Thanks so much for running this website which is such a wonderful help to many IBS sufferers. It's so nice to know that you are not alone and not as crazy as some people who do not suffer with IBS think you are. Good luck to everyone on finding what works for them!
Update on Paula...
I just wanted to send an update. After months of being on Lotronex once a day and 50mg of Zoloft I am almost completely free of all my IBS problems. I have even been able to eat some of the things that I had to give up because they would make me so ill. It is so nice to finally feel like I have a second chance at living. I am beginning to get over my fear of not making it to the bathroom on time and having an accident.
Lotronex is a very hard drug to get a prescription for and it took me over a year and quite a few tests to convince my specialist to let me try it, but it was well worth the fight. To all those who live with this disease my thoughts and prayers are with you all and I wish you all luck in finding what works for you. Don't give up the fight!
Review by Wendy
I have endured IBS for many years, and have had many major embarrassing accidents. I was on Lotronex for a year, and had great results taking 1mg once a day. I went off it because I moved and my new doctor refused to give it to me because of the issues that had been reported.
I went back to sudden, huge bouts of loose watery stools, as often as 12 times a day. I was afraid to eat or drink, and getting ready to leave the house for work was an agony. It felt like it would never stop running.
I finally found a doctor who put me on 0.5mg Lotronex twice a day, and that helped for a while, then I no longer got any relief. I am now taking 1mg twice a day, and still have accidents. I am seeing a GI specialist next week to rule out bacterial or other problems. Hang in there ladies, you are not alone!
Review by Ann
Lotronex has allowed me to live a normal life. I have suffered from IBS since I was 19, and I'm now 34. It became so chronic that I could not leave my house at times. I began taking Lotronex in 2000 but then it was taken back, and I thought I would die without it. I now take it again, and it's the best thing that has happened to me.
Review by Judy
Lotronex helped me with chronic diarrhea. Years of suffering and not having a normal life was depressing and debilitating. Molocure did not help me, nothing really has helped except Lotronex. I went into a panic when they took it off the market. I was not able to work full time, was depressed and suffered from anxiety, worry, and did not lead a normal life.
Then I found out they had put it back on the market and that I qualified through a doctor who took the time to get approved, and he put me on a program for people with limited income, Access to Bridges through GlaxoSmithKline. However, now since I am working more hours I made over the allotted income to qualify. I do not have insurance and can't qualify for it. I find that the cost is anywhere from $413 to under $500 a month for me. That's a big chunk of money for me each month...
Lotronex is the only medication that works for me. It does what I need it to do and I have a better quality of life, more normal, and it enables me to go to work and support myself.
Review by Angela
I was lucky enough to get to take Lotronex for three months. And those were the best three months in the last 10 years. I was very upset when I had to stop taking it.
Review by Kathy
I was only on Lotronex for three weeks when my doctor called and said 'Throw it away'. For the first time in three years I was able to function as a normal human being, and I was devastated when Lotronex was taken away.
Now three years later I had to see a gastroenterologist because my IBS had become so severe I literally had not left my house in over two months without an incident. Even though a colonoscopy was my last alternative, my new doctor said I could have Lotronex again, if my colonoscopy was clear of any other problems.
After the colonoscopy my symptoms seemed 90% worse, but I am now on Lotronex twice a day and am finally seeing some normality in my life. I also take Caltrate Plus 600 (one tablet, three times a day), and follow the Eating for IBS diet (which is not so great, but knowing what the alternative is, white rice and French bread sounds good).
My doctor has absolutely no idea why my IBS became so much worse after my colonoscopy, which I swear I will never have again! I'm constantly looking for new research that may help those of us that either have to stay at home, or travel with a map filled with clean bathroom facilities! I have found though that restaurants (we go out almost every night due to the fact that we have a home-based business) are extremely happy and cooperative and adjust their menus to my diet needs.
IBS is such a non-spoken subject that it is difficult to find a doctor who really sees the real symptoms versus the mind over matter syndrome.