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Discussion Starter · #1 ·
I will be on Lotronex for a week now. Yesterday was not a good day for me. I took my Lotronex in the morning and I took a whole pill. Last evening around 8:00 I started getting these gas pains, which I have been getting and the next thing I knew I was in the bathroom with very loose stools. I just don't get it. One day I'm constipated and then I have these problems. I don't recall getting the gas pains the first time I took Lotronex a year ago. My stomach just hasn't been feeling right. I'm so use to taking Imodium. I know I have to give this time, but I'm just wondering if anyone else out there is experiencing this?
 

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Discussion Starter · #3 ·
Thanks Debbie, I read your posting on Dr. Appt tomorrow. Are your symptoms getting any better? Are you still taking one pill a day? I'm just wondering if these gas pains will eventually go away.
 

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Hi Calle. No they are not getting better in fact I had a bad episode today ending in the big D. I am going to start taking 1 and 1/2 pills tomorrow since that should get me to the end of the first 30 day period and hopefully the DR can prescibe the 2 pills for me next time. Heavy sigh.
 

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I got that during my first week on Lotronex. Just so happened I had a doc's appt the next morning, too! The gas pains were so bad when they started, it was somewhat alarming. After the rest of the attack kicked in I understood the pains and eventually they stopped as I emptied out...I really reminded me of rebound D after a good dose of Imodium. Painful gas, then when things start moving it is hard, formed stool that gradually gets softer until it is completely unformed. Seems like having that formed stool in there to start creates the pain, and after things are moving out there is not all the discomfort (other than the burning butt!)BTW when I say "hard" stool I mean hard to me, which is most likely just "normal" to your average non-IBSer.
 

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Discussion Starter · #6 ·
Hi Debbie,I think I may have to increase my dosage too, but I'm somewhat afraid to do that. Wondering if the gas pains will get worse. I just don't feel good. I read in one of my IBS books that people that have been taking Imodium should not go cold turkey getting off of it and that is what I did. Have you still been taking the Imodium? I'm wondering because if you have and your having the problems like I am then it can't have anything to do with Imodium.
 

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I wonder if these problems are due to the way they are having you take the Lotronex this time - starting at a low dose & increasing as needed - as opposed to before - starting at a high dose & decreasing as needed.Jennifer
 

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I definately believe that much of the problem is starting at a low dose before moving to a higher dose. This is so backwards in thinking especially when only those patients with terrible daily IBS-D are the only ones allowed back on the drug. Really!
 

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I was having the same problems. In the past when I was on the Lotronex I was on 4mg a day. Worked great. This time around I tood one pill 1mg in the am for 3weeks. Was having a lot of pain and bloating. Then doc upped me to 2 pills a day. Still the same thing happened and then ended up with 2 severe attacks in 8 days. Had attacks before like that but weeks apart. So went back to the one a day and kept a log. Seemed like no matter what dosage I took I noticed that anywhere between 4-6 hours after taking the pill I started getting cramps, gas, then D. I thought maybe it was a fluke because it worked so well with no side effects before it was taken off the market. Hubby pointed out to me that back then I was still able to function for the most part. Now I am 99% worse off than ever and am lucky if I can go to the store once a month. Other than that I'm mainly housebound. So after 2 weeks of keeping the log I have determined this, I did one week with one pill and one week with 2 pills....Week one:1mg 8am with glass of water, 1pm cramps start2pm gas buildup really bad2:30pm D starts and doesn't stop until completely cleaned out arond midnight.Pain lingers and keeps me awake most of the night.This went on almost every day for a week.Week 28am 1mg with glass water12pm cramping and gasby 3pm bad Diarrhea and nausea5pm take another 1mg pill with dinner (sometimes later, dinner was anywhere from 5-6:30pm)Midnight-woken up with cramping, nausea, diarrhea, up all night with it.I stopped taking the Lotronex on Friday February 21st. The 22nd I wasn't feeling that great still because of 2 straight weeks of pain and D. the 23rd I felt great and got a lot of things done around the house and went out with hubby. Monday took my kids shopping with me for a couple hours. Tuesday stayed home too tired to do much from fibro and ibs was acting up a bit. Wednesday again felt pretty good went out with kids for couple hours just hanging out. Thursday didn't feel good most of morning. Thursday evening wasn't that bad. FRiday was good. Hubby got home early from work (around 4 after he did food shopping on way home) and I wanted to go out. So we went out driving around, went up to Laconia (about 45min drive away)and did some shopping at the outlet malls) and then got dinner to eat in car on way home. Ate Kentucky Fried chicken dinner, but then went to mall close to home and did more shopping, (bought a dishwasher) and finally got home around 10pm. Had a great time.over the weekend we ran errands together off and on throughout the day. Last night however I decided that since I had been feeling pretty good I would try to take one Lotronex before bed. Unfortunately I was woken up at 3am with cramping and felt like I had to go D. Nothing happened until around 5am. Now my stomach is really raw, the D is back, the cramps are there as well as the nausea.So my conclusion to this is after 2 years of fighting, writing letters, signing petitions, calling glaxo on a weekly basis, filling out surveys, etc etc to get this medication back, now I can't take it because it now makes me worse.There is not one other medication on the medical list for IBS that I haven't tried. I have even tried medications for crohns, diverticulitis, etc to no avail. I am doomed to live the rest of my life like this until there is some miracle on my behalf.Hope things get better for you guys
 

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Discussion Starter · #10 ·
Sandi,Thank you so much for your posting. You have expressed what I have been fearing and that is after ALL of this fighting to get Lotronex back that I am not going to be able to take this drug. I don't understand why a year ago I didn't have these problems when I took it and now I do. It completely makes no sense to me. I would have remembered it making me feel this bad. I was one of those persons that didn't need to take 2mg-4mg per day. I was only taking 1mg per day and sometimes a half of a pill. I do recall getting some gas with it, but not like the gas pains I have been experiencing this time around. This past weekend I was feeling so miserable that I stopped the Lotronex. I felt better yesterday so I took a half of a pill before dinner last night. So far I am feeling okay. I am going to continue to just take a half of a pill. If that doesn't work then I'm probably going to have to give up. If I increase the dosage then I will just go back to feeling bad. I am depressed over this because I had such high hopes of starting to live a normal life.
 

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We are all different, but I say stick with it. I did, and I experienced some of the same, but milder. It's been about 6 weeks now, and I've been doing very well at half a day, taken in the Am before breakfast. Took about 3 weeks to adjust.
 

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If you can, stick with it. I agree with Sherree. I had terrible cramps during the night and gas, etc., etc., etc. And, NEVER had that the first time I went on Lotro - it worked immediately. I've been back on since 12/16 and every week gets better. Pain almost gone during the night. I even had to take Imodium this past weekend but not as bad as before and urgency not nearly as bad. Some think it is because we were on other stuff - I was on Zofran and imodium. I'm waiting for the day I have enough confidence again with Lotro to plan a trip. I take 1/2 pill in the a.m.
 

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I've been back on Lotronex since Dec. 20th. After a week or two I increased to two per day since one didn't help. I then began to have headaces and muscle aches and more cramps. etc... I went back to one per day and the aches went away. One seems to work a lot better for me than two. I haven't had any D in some time and the cramps generally only happen after a big heavy meal. I also take mine just before bed and I'm still not confident enough not to take an occassional Imodium if I've got a big day planned. Its my belief that two per day may be too much for some and may actually increase symptoms. Its also been my experience to have more results/relief the longer I'm on it...with each passing month I feel better.
 

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Discussion Starter · #14 ·
Thanks for everyone's encouragement. The past two days I have been taking JUST a half of a pill and I have not been getting the gas pains. I take my half of a pill before dinner. This morning I was somewhat constipated, but not bad. Today I am feeling pretty good so maybe this is a good sign. I know this sounds crazy when I take a whole pill I get the gas pains, cramping which then triggers the diarrhea. If I take the half of a pill I have no gas pains and it CONTROLS the diarrhea....go figure. I think your right that everyone is different and it's going to be a matter of trail and error to see what works for me. I hated the thought of giving up on Lotro when it helped me the first time round.Hugs to all of you and Debbie let me know how you are doing.
 

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SLBEL have you tried taking the Lotronex before bed? That seems to be the most effective time for me. The few times I took it earlier in the evening I seemed to have more gas. Perhaps it dissolving while I'm sleeping helps it regulate my gut more effectively when I wake up?BTW for those taking Imodium plus Lotronex my GI dr begged me to not combine them. Lots of docs are afraid of the risk with Lotronex alone and with Imodium would compound things. The first time I was on Lotronex I only had to take Imodium once during the one bad attack I had in the several months I was on it. After the wonder drug was recalled, I found lower doses of imodium were effective for me because I'd lost much of the tolerance I had built up.It is amazing how Lotronex does (or doesn't) work. Some people take it, and it doesn't help much. Others take it, and it's amazing the difference it makes. I was surprised to hear that my former GI dr is not prescribing it for his current patients...the liability is scaring drs and there weren't that many patients who it really worked for, according to former GI doc NOW... but when it was recalled he was very upset because for the people it worked for it WORKED.
 

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Calle-I upped my dose to 1 and 1/2 per day because the 1 wasn't working. It was great for about a week then today I had a major attack. I think because I forgot to take the 1/2 pill yesterday? I am gettiing very frustrated. I swear I remember taking 4 mgs last time around and that worked beautifully for me. Even if my Dr lets me have the 2 mgs I just don't know if it is going to work or not.
 

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Boy, am I glad that I decided to check out the website today. I haven't been on in a long time. I started my Lotronex on March 1st at 1mg per day. I experienced a real slow down of my bowels, not constipated, but close. I figured it would subside like it did the first time I took Lotronex. It did, but, by the evening of March 5th I had extreme diarrhea. I thought it was due to my sinuses draining. The severe diarrhea continued through March 8th. I ate very little because I felt so bloated. I drank a lot of Gatorade and water to avoid dehydration, but I awoke this a.m. just exhausted. I think I'm dehydrated and I'm going to see the Dr. in about half an hour. I have missed a lot of work that I can't afford to. I sure hope it was the sinuses and not the Lotronex!
 

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Hi there--I just started taking Lotronex again about a week ago. If I can chip in my 2 cents...Be sure to change your diet (more greens, fiber, etc) when you commence taking the Lotronex. I know it's a difficult step to trust in the drug right away -- I felt the same. And I was so stressed over all teh handouts telling me I could die, get ischemic colitis, etc, that I think I caused the constipation and cramping. Try to relax and adjust your diet back to "normal". I take 1/2 mg before breakfast, and I have two normal BMs a day (morning and evening). I am a changed woman! I even ate an apple at lunch today (gotta love those 6 gr of fiber). Try to hang in there. You'll discover the right combo of dosage and diet in a couple of weeks. I spent several whole days out celebrating my birthday -- away from easy bathroom access -- I haven't felt so free since the last time I was on Lotronex. Good luck!!!
 

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Before the recall of Lotronex I was taking 1/2 pill daily. I did not vget sick not even once within the 1 1/2 yrs I took it.When we got it back. I went back on it. First taking 1/2 pill. I had terrible D. I increased the dosage again and again. I was then up to 2 per day. This constipated me HORRIBLY BEFORE the recall (when drs. told you to start with 2 pills). I was actually impacted the first time around. However, this time when I was taking 2. It did NOTHING. I had the worse D, gas, cramping, and burning that I have ever had in my life! So, I stopped taking it completely.Then my GI urged me not to give up on it. He wanted me to still take my 2 Loperamide (Immodium)pills daily plus take the Lotronex with it. He wanted to re-introduce the Lotronex into my system. He told me when I start to get C or have any trouble to drop the loperamide. Hoping that I could depend solely on Lotronex.Well, it has beemn 3 weeks now. I take 2 Loperamides and 1/2 Lotronex. At first I had lots of gas again. About 2 weeks later it went away. I was shocked because that didn't happen on my second round of Lotronex after the re-release. So far, in 3 weeks I have had only 1 very HUGE D attack. It isn't working like before. That I am sure of. I am hoping that in the next few months this will improve. If not...I will just rely on Loperamide. Loperamide works pretty well, but not well enough. He told me that if the Lotronex doesn't work out he will give me another drug to take with the Loperamide.I swear thay changed the Lotronex formula, but Janet Woodcock promises me it hasn't been touched.
 

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I am sorry so many of you are not having good results with Lotronex. Is anyone having good results besides me? I am taking 1/2 tab twice a day and it is amazing. Absolutely no diarrhea at all. Still avoid certain foods but I think I'll always have to do that. Rare slight constipation if I don't eat enough fruit and I just add fiber or skip one dose occasionally. Hope those having trouble will discuss with their doctor. Perhaps trigger foods need to be figured out. Even on Lotronex I am unable to tolerate any dairy products. Maybe you have all tried this but I found a food diary very helpful years ago. Good luck.
 
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