I’ve been contacted by a chap who works for Prometheus Labs, the company who now hold the rights to Lotronex. They would like to hear your feedback about a number of Lotronex issues.
This is a great opportunity to air your views to someone who is at the heart of the Lotronex story, and that doesn’t happen often, so please do take this chance. I’ve set out the issues that the Prometheus rep raised below, and given a few responses of my own, but the people we really need to hear from are those of you who are using Lotronex, have used it in the past, or have asked your doctor for it and been refused.
Please leave your message in the comments section, either to comment on any of the issues raised below or to make your own points. You can also share your personal experiences of the drug. Just fill in the comment form at the end of this blog entry.
Just to say before we start – I’m not offering any recommendations or endorsements here, either to the makers of Lotronex or the actions of the FDA. These are very important issues and they need an objective evaluation.
I am however firmly on the side of the IBS sufferer, so tell me what you want!
1. “There are many women on multiple medications but they are still experiencing symptoms and their quality of life and daily activities are still impaired. And yet their physicians will not discuss Lotronex with these women and at least offer the option.”
This presumably is because doctors do not believe that IBS is a serious problem (I’ll come back to this point), because of the history of Lotronex itself, or because the patients do not fit the tight criteria that the FDA have specified for drug’s prescription. For anyone who doesn’t know what happened with Lotronex, here is the backstory.
Lotronex was withdrawn by the US Food and Drug Administration (FDA) in November 2000. This was because the FDA had identified 70 cases of adverse reactions to the drug, including five deaths, relating to intestinal damage caused by either ischemic colitis (restricted blood flow to the intestines) or severe constipation.
In 2002 the drug was reintroduced under a restricted drug distribution program which allowed access to the drug for patients who were classified as having severe diarrhea-predominant IBS, which the FDA estimates as applying to less than 5% of patients.
Doctors need to enrol in this special program before they are allowed to prescribe the drug, and patients must also sign an agreement to show they understand the potential risks and benefits. A lower dosage of Lotronex has also been introduced to reduce the risk of constipation.
2. “Patients with IBS are often told it’s in their heads or that it’s not very serious. How can women with IBS-D become empowered to challenge their doctors and demand therapy?”
This is more about the general ignorance surrounding IBS rather than the potential risks and benefits of any drug. Ah, that all in your head quote just won’t die will it? Maybe these doctors should be keeping up to date with their reading:
“IBS is not caused by stress. It is not a psychological or psychiatric disorder. It is not ‘all in the mind’. Because of the connection between the brain and the gut, symptoms in some individuals can be exacerbated or triggered by stress” says the International Foundation for Functional Gastrointestinal Disorders IFFGD
“It is important to note that IBS is not a psychological disorder” says the Canadian Society of Intestinal Research
“Functional gastrointestinal disorders are not psychiatric disorders” says the UNC Center for Functional GI and Motility Disorders
As to the question of whether IBS is serious or not, well, it’s certainly not fatal or progressive, even if untreated, and that is enough by itself to send some doctors to sleep. But there are plenty of medical conditions that won’t kill us that can still ruin our lives.
One of the best ways to measure the impact of a particular medical condition is through a quality of life study. These studies ask patients about everything from their social lives to their emotional wellbeing to find out exactly how difficult it is to live with the disorder in question.
A quality of life study in the medical journal Gastroenterology showed that IBS patients have a significantly lower health-related quality of life than patients suffering from other chronic disorders. In many areas IBS sufferers had a lower quality of life than patients with diabetes, and you can bet that your local doctor treats his diabetes sufferers with respect.
3. “How do doctors and patients define ‘well’. I know Lomotil and Imodium can provide some relief, but is going from 10 bowel movements a day to five ‘well’?”
The quality of life studies are relevant here, but in many ways this is going to be very subjective. It’s certainly a stretch to consider five bowel movements a day healthy, but if the patient isn’t suffering from any pain or discomfort it may not be a huge problem. Or it could mean that you lose your job because you can’t stay out of the bathroom.
I tend to consider myself well when my IBS isn’t limiting my life to a degree that makes me consistently unhappy. I think it’s reasonable for IBS sufferers to have to live with a certain amount of discomfort and pain on an irregular basis, but I also think it’s reasonable to say that any patient who finds that their symptoms start to take over their lives should be offered help. That sounds pretty vague, and I’m not sure how else to answer this question.
So – what do you think? Has Lotronex changed your life? Do you think the FDA acted correctly? Do you worry about the potential risks of Lotronex or has it transformed your life? Speak up on Lotronex!
I have suffered w/IBS-D since I was a teenager-50 now and still suffering. Gotten much worse past 2 yrs. since gallbladder removed. When Lotronex was introduced, my Dr. prescribed it for me and I was in Heaven! It was the ONLY drug that ever helped me & allowed me to live a normal life w/o fear and always needing to know where the nearest bathroom was! Traveling has been a nightmare! Some days I don’t even leave my house!
Lotronex was a Godsend and drastically improved the quality of my life! I was very upset when it was pulled from the market. I begged my Dr. to put me back on it,but didn’t have script ins. & couldn’t afford. Now I do have ins. and want a new script 4 Lotronex! My Dr. wants me to have some testing done 1st before considering. PLEASE DO NOT DISCONTINUE LOTRONEX!
I was on Lotronex before it was taken off of the market, and I was extremely upset when it was removed. It made a huge difference in my ability to function easily. I did have to be very careful about the dosage and listen to my body for signals. I can see how it might be easy to overdose. I found that one pill every 1 1/2 days was the best for me. I personally believe it is a very powerful drug and needs close communication between patient and doctor for its proper use. In addition, I believe it is essential to have it available for IBS patients who are in need.
(In the time that intervened between its withdrawal and its reintroduction, I found Librax, which works well for me and have not needed to seek out a specialist and convince him/her to prescribe Lotronex.)
I was on Lotronex for about 2 years. This was after extensive medical tests turned up nothing at all and the IBS diagnosisi ws made. I was so sick from the IBS-D attacks tht I was hopitalized twice. After starting the Lotronex, I was able to somewhat get my life back together again. I did have to sign all the paperwork, but it was worth it.
I never had any problems with Lotronex at all. In fact, it helped me so much that I was able to discontinue it after the 2 years. I began taking 1200 mgs of calcium a day and that seemed to do the trick. I truly believe that Lotronex gave my bowels the rest they so badly needed so that I could turn to a more natural alternative.
As my primary care physician says, ” if the benefits outweigh the risks, then there isn’t any question”. Lotronex helped me to overcome the agony of IBS-D, no question. I can’t believe that doctors would not give patients who are suffering so horribly a chance to see if this drug would help them. All I can say is those people never experienced the agony of IBS.
I have suffered from IBS-D for as long as I can remember and I am now 54 years old. I tried every remedy that ever came out and the only thing that has worked is Lotronex. It was finally prescribed to me just after the ban was lifted, about 5-6 years ago. I take one pill per day unless I am travelling, which is always stressful, and then I raise it to 2-3 pills/day, with my doctor’s consent. We do blood tests periodically to test my liver which is doing fine.
Lotronex truly changed my life. I could never have a job that required me to be stationed in one place for any length of time because I had to be able to bolt to the bathroom. Now I have worked successfully as a receptionist for 4 years and never had a problem. Travel is still my Waterloo because of so many past bad experiences, but I am working on it.
If they ever take Lotronex off the market again, I would have to find some way to find it on the black market. I don’t think I could live without it.
I have had IBS for about 15 years and in the last 2 years it has turned from diarrhea to constipation. It’s hard to determine which is worse, but at least with the constipation, I dont have to worry about finding a bathroom every time I eat. However, I do experience alot of distress from the constipation. There are times that I go 3 weeks at a time without a bowel movement.
I am a Registered Nurse and when reading your letter, you stated that IBS is not considered fatal. It may not be considered a fatal disease but it can cause fatal consequences. IBS with severe diarrhea can cause fluid and electrolyte imbalances and with constipation as I suffer, 3 weeks without a bowel movement can cause rupture of the bowels and cause all of the poison in the bowels to escape into the abdomen which can cause death.
I have been told by my physician if I have no BM for 3 days to see him but if I did, I would live in his office. I have tried Amatiza and several other meds but nothing seems to help. Being an RN you would think I would be aware of more available meds but as you said, IBS doesnt seem to be many doctor’s concern. If anyone knows of anything that worked for them, I would appreciate any input.
As for Lotronex, I’m not familiar with it so have little to say about it except if it helps people with their IBS, then for God’s sake it needs to go back on the market. Unless others have suffered with the diarrhea or constipation, then they have no idea how it can change one’s life. I hope for the sake of those that it benefits that they will be able to once again get it. You’ve got my vote !!!
Thanks for the comments so far. Angela, you say that IBS can cause fatal consequences, but I think that’s putting things very strongly, and I wouldn’t want anyone to read this and think that they’re going to die from IBS. I’ve never heard of anyone dying from IBS-related diarrhea or constipation, ever.
Extremely severe diarrhea and things like bowel obstructions can be dangerous, definitely, but the chances of an IBS sufferer in a developed country having diarrhea or constipation that is so severe, and so poorly treated, that it leads to death are miniscule. If there were IBS sufferers dying from their disorder then I think we’d be taken much more seriously by the medical profession at large.
I had a patient with severe left lower quadrant pain. The ED gave her the highest dose of morphine possible for her petite size, and age (elderly), yet she still howled in pain much of the time. I heard high pitched bowel sounds in all four quadrants, as did my charge nurse, and then the surgeon. The surgeon setup a consult with GI to be scoped, but GI sent her back because some of her bowel had died. The surgeon was quite upset that he missed that during assessment, and asked if I remembered that he checked her bowel sounds, which I did remember, since I remember me and my charge nurse checking them as well (we spent a lot of time in her room, since she was so distressed). I don’t know if IBS caused it though; it could have been adhesions, cancer or tumor, or maybe even a small infarct for all I know.
I’ve also had a patient that had to have some of her bowel removed during a surgery for something else, due to finding unexpected bowel cancer. Since she had not been prepped properly for bowel resection (think colonoscopy prep), her recovery was quite difficult. Her NG drainage was excessive when I took over after report, and I hoped it was due to the earlier shift being too busy and forgot to empty it. But I checked her earlier I/Os, and they’d emptied it about 1-1/2 hours before shift change. She was so nauseated that we gave her anti-nausea meds IV as often as allowed per dr orders. I was worried she might inhale stool (like another patient had done while I was still a nurse aid) because she was so constipated. We couldn’t give her the “usual” post-op medications or enema because those are contra-indicated for bowel resections. Once I got her situated on her side, I explained to her family member that they should walk her every time she needed to urinate, in the hopes that she’d have a bowel movement. Meanwhile, I had lab take her daily electrolyte draw early in the morning to make sure she didn’t lose too much potassium. She had a BM before the end of my shift, and her potassium was barely below normal, so they only gave potassium in the large IV bag instead of in a small bag which hurts the veins more.
The other patient that had inhaled stool refused to walk post-op. She ended up in ICU of course. Our unit also had a patient that vomited stool all over one of my coworkers. Yes, that’s nasty, but not nearly as bad as getting stool in the lungs, or having bowel contents spill into the peritoneal cavity, which can cause sepsis (my son’s stomach ulcered, and the contents caused peritonitis, which led to sepsis, which took his life!) We also had a patient transferred from ICU, after a supposed close-to-death experience from a ruptured appendix. I’m guessing the peritneal lining does not like being exposed to anything it’s not supposed to be exposed to.
BTW, I recently read (but forgot to bookmark) about how the appendix might contribute to bowel bacteria balance. That would be interesting to find out how many IBS sufferers have had their appendix removed, compared to still having them, and comparing those numbers to the non-IBS population.
But, I agree with you that IBS-C sufferers have an fairly low chance of severe complications, or even death, as long as they can get into the ER, or their office DR order CTs right away, or at least pretty soon. How long do we have to wait for an office appointment? How long are ER waits?
So these experiences replay in my mind when I suffered from a few IBS-C episodes. When I had taken stool softeners, miralax, prunes, coffee, but couldn’t even pass a small amount of gas many hours later, then started burping like a drunken sailor and getting nauseated, I had my husband take me to the ER to rule out obstruction or ruptured bowel. I explained to them that it felt as though my intestines were so extremely swollen, that the lumen (opening that the foods passes through) felt like it was swollen shut.
CT ruled out obstruction or rupture, and I had a colonoscopy later on, after my swelling had gone down, which ruled out cancer. I had a gluten test (neg, GP ordered it after I told him my symptoms stopped after I quit eating wheat products). I had no mucous, pus, or blood with my stools, so I figured no Crohns or ulcerative colitis. As time went on, I did have a few more very painful episodes, despite not eating any wheat or gluten foods (after eating peas and corn on separate occasions). Then I found HelpForIBS.com and learned about food triggers, specifically insoluble fibers.
I did another elimination/challenge diet, but this time I tried eating processed bread first, then eating whole eat bread like I used to. I tolerated the processed bread just fine, but had an attack within a few hours of eating the whole wheat bread.
HelpForIBS.com taught how to be able to eat small amounts of insoluble fibers only after I’d eaten an insoluble fiber first, and to finely dice or puree the insoluble fiber. I also started taking probiotics, and multi-enzymes to “pre-digest” my food. Those three things helped me tremendously.
I think I noticed that IBS-D sufferers seem to suffer from different food triggers than IBS-C sufferers. Coffee and red wine help me, but supposedly send IBS-D sufferers running. I’m hoping someone will do a study to see if the different types of IBS have common triggers between the two groups. I occasionally have mild problems with red meat, but not nearly as bad as the insoluble fibers. Maybe there’d be a few food triggers that affect both types of IBS sufferers.
I’m glad to see that some IBS posters are identifying which type of IBS they suffer from, so that new IBS sufferers won’t follow the wrong advice. I hadn’t heard of Lotronex before, so I wondered if it might be related to Zelnorm for IBS-C sufferers, since it had been pulled as well (except in a few extreme cases, similar to Lotronex). But I am guessing I hadn’t read about it in the past since it’s apparently prescribed for IBS-D, which wasn’t mentioned in your post until item #2.
I have been battling with constapation most of my life. but resently things have been flowing freely. eating chocolate is bad for my constapation. I don’t eat chocolate,citrus fruit,tomato sauce,butter,high fat food,alcohol,no caffeine,limit sugar.I’m not always good but t try most of the time. since i turned 50 my intestines are sentsative to food. I’m taking probiotics,enzymes,fiber smart from renew life,fiber pills,calcium,magnesium,zinc,B1 thiamin,multi vitamin. I don’t have much of a life but i don’t run to the bathroom and i feel better than i have in the past. I try to eat lots of cooked vegies and some fruit,nuts. lots of IBS cook books. this eating has helped alot. I have dermatitis on my scalp and anxiety. going off chocolate has helped my dermatitis. i rotate foods for food intolerances. If i eat the same thing everyday my scalp starts to itch more and i have to take antihistimine that seems to work. i’m trying to relax more for stess. retraining my brain is hard. kathleen
I have had IBS-D for 16 years, and shock waves rush through me at the mention of Lotronex becoming unavailable to me.
Over the years I have been prescribed everything out there to no avail…until Lotronex. I have been taking it now for 4-5 years and would never want to revert to my pre-Lotronex nightmare. Once I started taking it, the results were almost immediate. I couldn’t believe it. Thanks to Lotronex, the unsuccessful mad dashes to the bathroom, the isolation and devastation that severe diarrhea causes, are a thing of the past.
Traveling is still extremely stressful for me because of the severity of my pre-Lotronex experiences. It has been very difficult to forget the fear that was caused. However, I am working on it with high hopes of eventually overcoming this fear.
It is extremely unfortunate Lotronex was forced off the market in part because it was misprescribed. Now that I think everyone better understands its uses, the threat of unavailability should be a thing of the past.
To say that Lotronex has been life-changing in the most positive of ways for me is a huge understatement!
I was on Lotronex when it was taken off the market. It was a godsend to me. For the last 9 years without it I have had to map out in my mind where every retaurant, office complex and porta potty is in the firect path I am taking in my car. I have two children, 10 and 14, who cannot understand why I never volunteer for fied trips or be the designated driver to a soccer game. Recently I went to the doctor and he prescribed WellChol. It has helped a lot, but way to expensive ($200 a month). He has changed me over to Questran, but I have no filled it yet. I hope it works as well. I really want my marriage and my children back.
Hi,
My 8 year old daughter is a new IBS sufferer. We are having a time trying to find out her triggers and keep her pain free. She has missed around 50 days of school this year and it is causing great havic on my work and finances. They started her on Levsinex 0.375mg every 12 hours. She has been taking this for about 2 weeks, with very little relief, if any. Before she was diagnosed they had her tylenol with codeine for pain and extra strength adult vicodin. But her New GI dr. said he doesn’t want her on narcotics, even though she had relief with them. Any suggestions? Tips ? on how to raise a child with IBS? I scared of all the medications and what kind of reaction they will have on her little system. They are talking about some hypnosis and a mild anti-depressant. I feel so helpless. When she has a flare up , she can barely walk. It kills me to watch her go thru this.
I too, like so many others, had no social life that required me to be anymore than one room away from a bathroom facility. I have tried ALL of the traditional medications. I have a strict diet of NO gluten, soy, dairy or egg. Lotronex was the first and only drug that has every helped me. The only thing I can say is ….. I now have my life back. If I have my way….I will never be without it ever again. Lemme say it again I HAVE MY LIFE BACK!!!!!!!!!
Amy – I’m really sorry to hear that your daughter is suffering so much. IBS can be really cruel, and it’s very unfair that children have to suffer too.
In terms of suggestions I would think that the very best you can do for your daughter is make sure you arm yourself with all the latest knowledge about IBS and its treatments. I would recommend the book ‘The First Year – IBS’ by Heather Van Vorous as a great general introduction to IBS.
Some people do find that hypnosis/hypnotherapy is very helpful for them, and others find that a careful examination of their diet can help too, maybe trying gluten-free or dairy-free for a few weeks to see if that helps (this should be done under the guidance of a doctor or nutritionist, especially in a minor).
Of course you need to follow your specialist’s instructions carefully, but never be afraid to seek a second or third opinion if your daughter is not finding any relief from her current options, or you are unfortunate enough to have found one of those doctors who does not believe IBS to be a major problem.
Very best of luck – I hope things improve very soon for you both.
Like so many of you I’ve suffered from IBS type D for quite some time now. Since I was a teenager and there was no diagnosis for me. In the past two years my IBS has really spiraled out of control. I’ve done everything I can do from taking Tai Chi, to long distance running, counseling, diet and so on and so on just as many of you have. My GI doc and I have talked about going onto lotronex, which honestly I am petrified of. Not to mention the fact that I’m not working right now because I am on so many narcotics and constantly in a tremendous amount of pain. Often, I hurt just as bad as when I have kidney stones. My cap on my medications for my insurance is a mere $2,500. When you start adding up what I’m paying without the lotronex it is a staggering number. I’ve seen people say the price is anywhere from $500 to $1,000 monthly and am not sure exactly where the number falls, but I know I am not able to afford it. Even if I am for a short time, what happens down the road? I’m a student, there is no way I can afford all this on student loans. Currently I’ve applied for any help I can get, but I fear it is all too little too late. IBS is ruining my life, I may have to drop out of school since I am on so much pain medicine. It would take me forever to get anywhere with a reduced course load. I’m also already in quite a bit of debt because of this situation. I suppose the point of this is that I am not only petrified of the side effects of lotronex (which long term affects don’t really seem to be known. Am I wrong here???), I just can’t fathom being able to afford to stay on it for not only short term, but the rest of my life. Oh, and even though I am IBS type D, if I am on too many medications I can become constipated, so that leads to a great deal of concern for me. I do want to point out that I do understand the complications of the narcotics with this, but without I cannot get out of bed in the morning. I would not be sitting here typing on the computer. Actually I would likely be in the psych ward at the hospital.
I wish all of you the best luck! This brings misery to so many of us, lets hope for some answers that may be suitable to live with.
About a year ago, last July, my son rushed me to the ER. My bowel movement was nothing but liquid and had been for 2 hours already. It wouldn’t stop, my heart rate was dangerously high and I was dehydrated. I had heart surgery the previous September, an aortic valve replacement, and had been on major drugs for my heart rate until April. I had developed IBS-D, my doctor believing I was experiencing “post-traumatic stress syndrome” IBS, my body was struggling to get back to normal. I was having diarrhea episodes where there was little control and short warning. It made going to work hell but I had to go. Feeling hot and physical activity were triggers as well as foods. I only felt comfortable in my car and my home. Then about 4 months ago, I had the worst episode at work ever. No warning, no control, no stopping it. The next day my GI talked to me about Lotronex. I am on the lowest dose, twice a day. The improvement has been significant. I still have to watch for the triggers but I now can take a shower without major consequence, mow the lawn, vacuum, etc. I drink a lot of water if I feel an episode coming on and it helps. I take Citrucel every morning. My life is closer to normal than it had been. My son was married last month and I, surprisingly, made it through that day just fine. I don’t know how I would cope if not for Lotronex. As DJ said, I HAVE MY LIFE BACK!!!!!!!!!
BTW, there is a group near Raleigh, NC that has sent me paperwork which I’ve filled in and returned as part of a Patient Follow-up Study for Lotronex. I agreed to it in my GI’s office with the papers I signed. They included a ten-dollar bill in the letter, which I have happily spent since then.
Like all of you, I also suffer from IBS-D. I have been through every test out there and they all turn up negative or find something mild that wouldn’t trigger the episodes. I am insured but when I went to get the script filled for Lotronex, I was quite suprised to find out that my prescription was going to cost me over $400! Needless to say, I didn’t have it filled. NOBODY and I mean NOBODY, understands what IBS-D is like unless they have suffered through it. I’m afraid to drive to work in the morning for fear that I am going to have to find a bathroom….and FAST! I also “bathroom scout” wherever I am. There is no generic form of Lotronex so I am back to square one living on anti-spasmodic meds and prayer…..sometimes I think prayer is more effective than the anti-spasmodic medicine. It’s depressing and debilitating! Not to mention it ticks everyone else off when you interrupt a get-together or function to get to a bathroom….and quick. There is only one drug out there for severe IBS-D and I can’t afford it. Guess I’ll be spending more time at home or buying a portable potty to take on the road with me…..talk about humiliating!!
hi i live in england, how can i get lotronex, i will pay what ever it takes to get it… can i ask my gp? i have asked already ,she said she had never heard of the drug, but all i need is a perscription, so would they still not give me one if i pay for it private…. is there any gps in england that use this drug….
Hi Leanne – unfortunately Lotronex has never been approved for use in England so it’s not available either on the NHS or privately.
do you think i could beg my gp , im sure i read a post from someone on another wed site saying there gp would give a prescription but the just could not get the money for it. is it worth ago?
I’m afraid even if you beg your GP they won’t be able to get access to the drug – as it hasn’t been approved in the UK it just isn’t available to anyone over here, and GPs can’t prescribe a drug that hasn’t been approved for use. It is prescribed in the US, and can be quite expensive over there.
My son is in his twenties and has had IBS-D for many years. He was fortunate to have a gastroentrologist who respected the debilitating effect that this disorder can have. He prescribed the .5 dose twice a day for my son and it has literally opened the door back up to his life. He has had no side effects and the drug is working perfectly. I can’t express how strongly he feels that this drug should remain on the market.
I have had IBS-D for two years, ever since contracting a bad case of giardia from a contaminated water supply. They call this post-infectious IBS-D. I’ve tried antispasmodics, anti-diarheals, fiber, no gluten diet, no fiber diet, no dairy diet, well…I’ve tried everything.
I started taking Lotronex in March this year and was moderately better after about 4-6 weeks. I noticed my abdominal pain went from a 10 to about a 5 and the diarhea went from every time I ate to about 30% of the time I ate. Then the side effects started, vaginal bleeding, cervical ulcers. I had just had a gyn exam before going on Lotronex and my gyn is certain these side effects are caused from the Lotronex. We biopsied the ulcers and shet hinks they are caused from ulcerative colitis – another side effect of Lotronex. My gastro doc says they are not.
The cervical ulcers and bleeding from them stops when I take Lotronex every other day or less, and starts again after a week or so when I take it every day. I feel like I’ve traded extreme abdominal pain and constant diarhea for lesser abdominal pain, a bit less diarhea but with other side effects. I worry about my gyn health. The bleeding ulcers on my cervix are awful. But my gyn thinks they are a side effect while my gastro doc thinks not. Who to trust?
I’m trying again to get off Lotronex, but it’s impossible to live a normal life when I’m off it. I know where every bathroom is, traveling is impossible, work is extremely difficult as I’ve had a few accidents, and continual foul gas/bloating, and there are 20 women at the office for one bathroom. I don’t go out to eat, I don’t cook anymore – I can’t eat most of what I cook, I’ve been in the hospital for dehydration twice, I can’t stay healthy as my body seems to think food is an enemy and gets rid of it either by awful debilitating pain and diarhea or vomitting. IBS-D rules my life and my husbands. I would rather have any other disease than this. There must be some other options for those of us who have virtually given up their normal lives to IBS-D. Isn’t there something other than Lotronex? Isn’t there a cure?
Everyone else on this site has had only positive experiences with Lotronex. Is there anyone out there who has experienced side effects like mine?
I was diagnosed with IBS-C when I was 16. They stumbled upon it accidentally when they were trying to figure out my other gastro problems (Acid reflux, Hiatul Hernia etc.) At the time they said it took my body three times as long to digest food. They came to this conclusion after having me eat a radioactive egg and watching my digestion through some machines. Anyways, the IBS-C didn’t affect me at all…until it switched to IBS-D. I had diarrhea for 8 months straight before finally going to the doctor, it was becoming unmanageable. That’s when they told me IBS could switch from constipation to diarrhea.
Then he prescribed Lotronex, 1mg once a day. It truly is the “miracle drug”. I would not be able to live my life without this drug. I did not have any side effects, unless you count pure happiness for not having to worry about random mucus excretions, going to the bathroom 24-7 and SEVERE cramping. I’m now 24, living a happy and satisfied life. Though they don’t know the long term effects of this drug, I would take it regardless because without it I can’t really “live” anyways. If I go off this drug for even ONE day my IBS comes flooding back. I accidentally tried this a week ago (forgot to take it) the next day I was substitute teaching and running to the bathroom in between classes whenever possible. It just reminded me once again that I really can’t live off of this drug.
*I’m currently on Nexium and Lotronex, can’t live without either of them
I have had IBS-D for three years now. At first the flare-ups were occasional, but they became constant and eventually daily. I tried Bentyl, but it didn’t work and made me extremely tired and dopey. I also tried 10mg of Desipramine, and then 20mg of Desipramine, but neither worked.
Then, finally, I read about Lotronex and gave it a try. I cannot tell you how wonderful Lotronex is. I take 1 pill (.5mg) daily, and it makes the flare-ups much less frequent. Occasionally, I will still have bad cramping and diarrhea, but with Lotronex, it is much less urgent and I don’t spend as long in the bathroom.
Please do not take the drug off the market – it helps so many people, myself included!
What a shame that this med. is “for women only” I was in the delveloping stage when this med. was being studied. I out of Phila was the only male that did not drop the study, after being on the med I had awesome results, was able to live life again. I’m able to keep my weight on, go to work and even to out and enjoy myself. Now its priced out of controll it was $ 120. now $518. per month. Followed all the rules from the FDA, doctor, and everyone in-between. The insurance company denied me because its “for women” and the manufacturing company told me that they don’t offer a program for finanical help. If anyone can help to this back on the list so the insurance company or Prometheus can lift some of the birden you may see alot more happier males out and about. It is an awesome drug and without it my life was in a total tail spin. To all, I wish you all good heath, stay on your meds. enjoy life!
My doc finally called in welchol and my husband left the pharmacy without it. $200.00.
I feel like having him take me out back and shooting me. I can not live with this anymore. I have kids at home, one bathroom; which I ususally don’ make it to anyway. I just can’t live like this anymore. It’s been going on since 2003. Why the h*** do drug companies charge so much for their meds?? I’m in total despair.
I’ve had IBS -D since I was twenty seven; I am Medicare age now. I was prescribed Lomotil many years ago and it worked for a very long time. Eventually, I must have built up a tolerance for it and it became ineffective. What followed were a number of years of public accidents, humiliation, isolation and frustration. This past summer, my new gastro dr. asked if I would be willing to try it again. Wonder of wonders: I am getting my life back. I still have the morning bout (1-2 hrs.) but can otherwise live a normal life. I called my dr. today to thank him.
I was put on Lotronex to day I hope this is a miracle pill,for the last 9mts. I have been a home recluce I go to the bathroom up to 20 times a day tried ever thing possible with no relief.I will do another report after I take the med. for a while.Can’t believe they want $800.oo for 1 months presc.filled.But this is something that’s VERY HARD to live with.
I have suffered from IBS-D since 1984, a year after my gall bladder and appendix were removed (although the dr’s say that isn’t the problem). I started out with the Bentyl treatment until Lotronex came on the market. Fortunately my Dr. knew I filled the requirements for this wonderful med. I was on it until they removed it from the market and suffered greatly–bouts of pain and D. I have been on Lotronex since they put it back on the market. Usually I was taking a 1/2 tablet a day but this past month I have had considerable bouts of D so have increased it to 1 & 1/2 tablets a day. I agree with others here, if it wasn’t for Lotronex my life would be staying near a bathroom most of the day or just stop eating. Also since I have insurance, my meds are covered and aren’t as expensive as I have read on this site.
Please, please never take this off the market. The risk is worth it.
I don’t think I am alone in this but as a male I seem to be in a small rare group. Lotronex was the only thing that helped my IBS. I used it for a couple years before I was unable to obtain it any longer. I wish I were able to have it back in my life. It worked.
I have had IBS-D since 1987. It began after having my gallbladder removed. I have been on anything and everything over the years…Cholestid,lesin, lomotil, elavil, calcium, probiotics, immodium, fiber, no fiber, gluten free, dairy free, you name it….been hospitalized several times for severe abdominal pain and dehydration. I have had numerous scopes….all with nothing showing. I was having anxiety attacks during the summer as my mother was dying and I was caregiver so was put on Trazadone which I swear has made the D worse, And my appetite has disappeared and I have lost 18 pounds because food makes me gag, or I get horrible stomach pain, gas and bloating. This week my GI suggested lotronex because I am at my wits end. I know the feeling of wanting to call it quits, desperation, anxiety, depression, hopelessness….so why do Dr.’s not think this is a debilitating disease??? My husband is so frustrated as it has gotten worse since March. I feel so bad for him. I started taking the lotronex yesterday and went off immodium to see what happens. I will get back in here and let you know if I see any results.
I have been successfully taking Lotronex for approximately one year, after five+ years of suffering with IBS-D. My condition had deteriorated to the point that I took early retirement, staying home with no outside life. I missed so many important family events. There was no medication or diet which provided any relief. I still have intermittent bouts of diarrhea, but am 95% improved; am able to travel, participate in various events, and enjoy life again. I feel so very fortunate to be under the care of a physician who understands the severity of this condition, and the suffering involved. There are no words to express my appreciation to him for prescribing this medication, and I cannot imagine life without it. I actually was unable to keep some of my appointments with him prior to this treatment, due to having to turn around and come back home, quickly. I have no worries about taking this medication, only worried that it may not always be available. That would be intolerable. I do hope the cost can be reduced, not only for my own needs, but for those who absolutely cannot afford it and are suffering terribly. It may not be considered a fatal condition, but it makes you wonder if you could continue to live with such miserable continuous unrelieved illness. This has changed my life, which is now worth living again.
I just had my prescription filled, but have been too nervous to take it after reading all of the literature you are given with your prescription. Thank you everyone for all the positive feedback. I really hope Lotronex works for me, especially when I travel. I get seriously nerous thinking about an upcoming 3 hr car drive in a couple of weeks. The serious side effects listed still scare me, but I’m hoping the risk is worth it. My doctor gave me a savings card where you call the company and get a code, which you write on the card and give to your pharmasist. When you fill your prescription you only pay $15.00. I’m not sure if you have to have health insurance for this or not. They didn’t ask me for my insurance number when I called. I am now anxious to start taking this today.
What kind of ‘code” are you talking about. I find this med way out or the norm in cost. After Glaxo sold the rights the price tripled and has been going up steadily ever since. to take it for the years it costs a couple of thousand $s
I have suffered with IBS for at least 25 years. I’ve tried everything. Immodium use to be my go to drug, but doesn’t seem to working anymore plus it gives me dry mouth which is very painful. I have a Dr. appt. today and will ask him again if he will let me try Lotronex. He refused me last time, I wish he could live in my body one day and he would know how awful it is to have IBS-D. I am on th edge!!
Bonnie, if your doctor did not prescribe Lotronex, then go on their website and there is a place where you can put in your zip code and find doctors who will. My daughter had gone to multiple doctors who refused to prescribe the drug. Then, we found one on the Lotronex.com website and had a prescription very soon afterwards. We’re hoping it works.
Lotronex has been amazing for me. I’ve been on it for almost a month. I don’t have diarrhea, but I have large frequent movements that I sometimes could not control (you’d think I would be stick thin), and living in NYC where all you take the subway, or walk, umm people tend to notice when you shyte yourself.
This drug is amazing! It worked right away, but this past week I’ve been having breakthroughs. Like running to the bathroom. Has this happened to other users? It worked amazingly at first, but now I’m nervous again about being far from a bathroom. I am on .5mg 2x a day. Does anyone take 1mg 2x a day? Comments would be greatly appreciated. I don’t want to start having accidents again! ahhhhhhh.