# MOTOFEN is back on the market!



## AmandaP (Jan 12, 2003)

For all of you IBS-D sufferers that were taking Motofen several years ago when it was taken off the market, I just received word from Valeant (the pill manufacturers) that it is back on the market. You will have to go to your pharmacy and request that it be ordered so they can start stocking their shelves. For all of you that have never tried this drug - speak to your Gastro doctor and ask for a script. It really does work and its not as expensive as Lotronex.


----------



## jmc09 (Oct 5, 2009)

AmandaP said:


> For all of you IBS-D sufferers that were taking Motofen several years ago when it was taken off the market, I just received word from Valeant (the pill manufacturers) that it is back on the market. You will have to go to your pharmacy and request that it be ordered so they can start stocking their shelves. For all of you that have never tried this drug - speak to your Gastro doctor and ask for a script. It really does work and its not as expensive as Lotronex.


Any idea if this available in the UK?


----------



## senior (Aug 10, 2005)

That is great news Amanda-I just called my local pharmacy and they said their wholesalers can't get motofen-I will contact some other pharmacies. What pharmacy do you get your motofen from? Maybe it's too soon to obtain motofen . .


----------



## jmc09 (Oct 5, 2009)

Its showing Motofen on the Valeant website as a current medication.


----------



## AmandaP (Jan 12, 2003)

My pharm said the same thing. I contacted my contact at Valeant and she sent the response below. Ask your pharm to call the 800 number. They seem very anxious to help in any way!! Yay!"The wholesalers were just notified this week. I'm not sure who the wholesaler is for Target, but this is definitely available to them. If they call our Customer Service line @ 800.321.4576 we can work with them to see what wholesaler they use and then we can contact the buyer."


----------



## AmandaP (Jan 12, 2003)

Any idea if this available in the UK? doubtful. I tried to get it in Amsterdam last year with no luck - but it was off the market here too at that time. I think Valeant is the only producer of this drug. You may want to call the 800 number below and ask them about distribution in UK.


----------



## Dixie_Girl82 (May 18, 2009)

I just called my pharmacy, Walgreens in North Carolina carries it and can order it. He said it is similar to Lomotil but does seem to work better. The manager at our Walgreens is very nice and is always willing to help me when I have questions. I have a doctor's appointment tomorrow after and hope I can get access to this and see if it helps before I take the plunge and pay all that money for Lotronex, which is not covered by my insurance. I will let you all know how it turns out.


----------



## AmandaP (Jan 12, 2003)

I have been taking Lotronex while Motofen was unavailable. They both work well, but Lotronex is over the top $$$$. There is supposed to be a generic out but we wont see it for awhile.


----------



## Dixie_Girl82 (May 18, 2009)

So you have taken them both? My doctor wont give me the Lotronex yet. Does it work well for you? Any side effects? What about the Motofen. Side effects?I am currently on Lomotil, not working well anymore.


----------



## AmandaP (Jan 12, 2003)

Lotronex works very well, but I can only get it 3 times a year because of the expense. So I can only take it for special occasions. You just have to be careful you dont get constipated. You have to keep check of your BM's daily. If you dont go at all, you have to eat some fiber - like a big salad. I never had that problem with Motofen. I hope it works for you.


----------



## Dixie_Girl82 (May 18, 2009)

Thanks for the update Amanda. I am going to the doctor this afternoon and I hope I can get something. I have been miserable for the last few weeks. More than the usual miserable with IBS. I have a big trip coming up soon with my husband and I am so nervous. I hope I can get some medication that will help so I can feel comfortable in the car for 4 hours while we go to the beach for a week. I hope the vacation will help me take my mind off everything that has been stressing me out lately, and maybe some of the IBS will get better if I dont think about it so much.


----------



## AmandaP (Jan 12, 2003)

What are you taking now for the IBS? I went to Europe last summer. I had a Eurail Pass because they have toilets on each car. It was the only way I was able to go. But, as soon as I got off the train I was in panic mode. And the restaurants everywhere now seem to only allow you to use their toilets if you are a paying customer. Its all a nightmare


----------



## Dixie_Girl82 (May 18, 2009)

I am currently taking Lomotil and Imodium, but it is not working as good as it used to. I used to could take 2 Lomotil and 1 Imodium and get through the rest of the afternoon and be fine. Now I am not so lucky. Everytime I eat I get sick


----------



## AmandaP (Jan 12, 2003)

I didnt have much luck with either Lomotil or Imodium. Lomotil only works for awhile, it also dried me out and if I didnt drink enough water I wound up with a UTI. With Imodium, it works, but I get backed up for days and then there is a big explosion with NO warning. I have heard of people taking as many as six tabs of Imodium a day. Anyway, both Motofen and Lotronex work very well for me. I sometimes stop taking both if I know I'll be home, just to give my system a rest. I think Motofen is your best bet as its not so expensive and you dont have to worry about constipation. Let me know what you wind up getting. If your Doctor or pharmacist tells you that Motofen is not available - give them the 1 800 number and let them handle their distrubutors stocking the med.


----------



## BRAD B (Dec 15, 2005)

Amanda I hope your right about it being back on the market. It was so much better than lomotil for me. So far I have emailed Valeant twice asking if motofen was being produced again and recived no answer both times. I called Valeant twice getting two different answers both times but both operators said no its not being produce. Wont go into details. I have a Pharmacy looking into it but as of now with no luck. Who did you speak with at Valeant I call the # you posted. Have you actually had a script. filled and the med. in your hands? I am hopping you are right and I just have had no luck finding anyone at Valaent that is informed.Brad


----------



## BRAD B (Dec 15, 2005)

Good news like Amanda said it is being made again. I just spoke to a third rep. from valeant and she said that it was true they are making it again and starting to ship it. Amanda you ROCK !!!


----------



## AmandaP (Jan 12, 2003)

The wholesalers were just notified this week. I'm not sure who the wholesaler is for Target, but this is definitely available to them. If they call our Customer Service line @ 800.321.4576 we can work with them to see what wholesaler they use and then we can contact the buyer. Again, above is the message I received from the Valeant Rep. If anyone needs to contact Valeant re: product on shelves from manufacturer to distributor, give this number to your Pharmacy. My Rep at Target said it may be 2 weeks before he can get his hands on it. But, since we have all been waiting for years - what's 2 more weeks! Just as long as we get it! Thanks, Brad. I've been bugging Valeant for years along with many others. Hopefully, it finally paid off. You can imagine my surprise when I received an email from them. I do encourage all IBS sufferers with IBS-D to try this med. Many many doctors (even Gastro) have not heard of this drug. I had to tell my doctors about it in order to get a script. Good Luck.


----------



## senior (Aug 10, 2005)

AmandaP said:


> The wholesalers were just notified this week. I'm not sure who the wholesaler is for Target, but this is definitely available to them. If they call our Customer Service line @ 800.321.4576 we can work with them to see what wholesaler they use and then we can contact the buyer. Again, above is the message I received from the Valeant Rep. If anyone needs to contact Valeant re: product on shelves from manufacturer to distributor, give this number to your Pharmacy. My Rep at Target said it may be 2 weeks before he can get his hands on it. But, since we have all been waiting for years - what's 2 more weeks! Just as long as we get it! Thanks, Brad. I've been bugging Valeant for years along with many others. Hopefully, it finally paid off. You can imagine my surprise when I received an email from them. I do encourage all IBS sufferers with IBS-D to try this med. Many many doctors (even Gastro) have not heard of this drug. I had to tell my doctors about it in order to get a script. Good Luck.


----------



## senior (Aug 10, 2005)

Amanda-All people on this board that relied on motofen for their fight against IBS should be thankful to you for your persistence with Valeant pharmaceutical corporation. I tried to call at least twice a month for the past year or two. Now my focus will be trying to get Valeant to market motofen-my gastro doc said he would send Valeant a letter urging Valeant to contact all gastro doctors with information concerning motofen.There was a convention in Chicago this past weekend on digestive disorders. My gastro doc estimated that only about 25% of the doctors that will be attending know about motofen. I told him that I am going to write a letter extolling the virtues of motofen but I said would it even make a difference-he said believe it or not pharmacy companies do read letters from consumers and take it seriously. So people that use motofen on this particular board should take the time to write a letter to Valeant corporation regading motofen. Again Amanda thanks for your diligence in this matter.


----------



## AmandaP (Jan 12, 2003)

I agree. Anyone taking Motofen that has positive results needs to "tell a friend and their doctors" to prescribe. Up until a few years ago, it didnt appear that many of the GP's were taking IBS serious. And the only thing that they told me was to "watch my diet." We all know how that goes. I only learned about Motofen via the IBS forum. And I insisted my doctor prescribe it for me altho he was hesitant because he didnt know anything about it. My Gastro Dr said I was the only patient he had that was taking it? I told him to try it with other patients and to get them off Lotronex! In any case, I hope we all have continued success with this drug and we are all about to get it with no problems. My next effort will be to try and get the insurance companies to pay for it.


----------



## spicycarrots (Mar 23, 2011)

Is Motofen available for men or just women like Lotronex? Also does anybody know if Motofen is covered by most insurance companies??


----------



## AmandaP (Jan 12, 2003)

Lotronex is supposed to be for women only. However, I heard they are trying to perfect it for men too. Motofen is used by both men and women. But, over a long period of time I have heard from others that you have to keep using more of it. I started out with only one pill a day. But, after 3 months had to move up to 2 a day. I know some people that take up to 7 a day that have used it for many years. I'm sure it depends on what insurance company you have, but for the most part - no they dont cover it. It probably falls under "designer drugs". Sometimes you can get a Gastro doctor to talk to your ins co and tell them that is the ONLY drug you can take that works for you. Then maybe they will pay for it.


----------



## BRAD B (Dec 15, 2005)

You would have to check with your insurance carrier. For me it is a tier 3 because there is no generic drug for it so it is more expensive then say lomotil which its generic is a tier 1. When I first found out about it and wanted to try it my primary and gastro Docs both never heard of it. I had to bring them the literature on it. I also consider both my Docs very good and up to date and they were still in the dark about motofen. It is similar to lomotil. The best way I can describe motofen's benifit over lomotil is that when my stomach starts to say it's time to Go....Now!!!! I could control it better and the cramping/urge to go was not as forceful and more controlable. If that makes sence.


----------



## AmandaP (Jan 12, 2003)

IMO Motofen is much better than Lomotil - that's why its more expensive. And I agree - altho other drugs may stop you up - both Motofen and Lotronex stop "the urge". I dont know whats in Motofen (ingredients are very similar to Lomotil) but it works much better. Of course, we all have different degrees of IBS-D, so its hard to predict what will or wont help each victim. You just have to work with it and see which is best for you.


----------



## Trudyg (Aug 16, 2002)

I've never heard of it, and I've had ibs forever! so, tell me, how does it work? I'm on lotronex, which isn't working all that great and i use quite a bit of immodium--although a lot less now that I'm on rezyst (probiotic). I was taking up to 12 immodium/day + lotronex and now I'm taking my daily lotronex and maybe 7 immodium/week. Lots less! Anyway, I'd like a way to deal w/ the sudden explosions that are so unpredictable. I'm in the process of dealing w/ an ulcer, so my gastro guy is up for changing meds at the moment. What are the ill side effects? I'm on other meds, too, so need to keep those in mind also. Thanks.


----------



## AmandaP (Jan 12, 2003)

It sounds like you have some serious issues. I think you need to discuss taking Motofen with your doctor. If Lotronex is not working for you - I'm not sure Motofen would either. They work along the same principles. Do you have Crohns?


----------



## Trudyg (Aug 16, 2002)

No, not crohn's, but I have things like migraines and arthritis that need medications that aggravate my ibs. I have to balance all my medications to maximize benefit/minimize conflict. Sometimes, as is normal with ibs, the belly doesn't cooperate and we get a blow-out. Such is life, at least we have meds now that we didn't have years ago. And drs, in the past all we had was a guy who patted me on the head and said "there, there, dear it will be alright. go home and take a valium". I fired him.


----------



## AmandaP (Jan 12, 2003)

. go home and take a valium". I fired him. I get tired of the ones that keep saying "just watch your diet" to control IBS. Now when I go to a new doctor, the first thing I say is dont tell me to watch my diet!! I dont think Motofen is as hard on your system as Lotronex. But, I could be wrong. You should probably talk to your doctor and ask them if you can give motofen a try for a month to see what happens. But, I wouldnt recommend taking Lotronex, Motofen and Imodium all at the same time! You may need a stick of dynamite!! (ya gotta laff about it or we will all die crying.


----------



## BaltimoreGuy (Mar 16, 2009)

How much is this costing with out insurance and how many pills ? I am on a very tight budget and wondering if it's even worth getting the perscription. If I can't afford it then it's no sense







Thanks in advance.


----------



## AmandaP (Jan 12, 2003)

It depends on what kind of ins you have and if they will pay some of it. Its been several years since I have taken it because its been off the market. But, I believe I was paying $ 30 a month. The price will probably go up, like everything else.


----------



## Dixie_Girl82 (May 18, 2009)

Update:Walgreens in North Carolina has Motofen. I called and they have access to it and are beginning to stock their shelves.Also, Blue Cross Blue Shield of North Carolina also covers the medication. Our insurance, it is considered a Tier 3 drug with no generic so the co-pay is $30.I have an appointment on Wed May 18th and will beg and plead until I can get a prescription for it. I will throw and 2 year old temper tantrum if I have too. Kicking and screaming and all!!!! LOLI will keep you all posted.


----------



## BaltimoreGuy (Mar 16, 2009)

Let us know how it goes dixie !! I am going to make an appointment myself and see what they can do for me I'm just up the road from you in Md/southern PA. Will be coming down to the OBX for the first time this summer if my stomach allows


----------



## AmandaP (Jan 12, 2003)

I got my first script for Motofen from a GP Doc and he had never heard of it. This was about 8 yrs ago. At the time, I dont think many docs had heard of it. But, he looked it up on his lap top (haha) and then wrote the script for it. My Gastro doctor never hesitated to give me a script for it - but, at the time I was going to him it wasnt availabe. Kick and scream alot to get this one. I hope it works as well for you as it does for me. You have to give it at least one week to get into your system.. Altho I think I remember it working for me after a few days.


----------



## senior (Aug 10, 2005)

Is there anybody anywehere that actually has located motofen? Walgreens wholesaler is named Cardinal pharmacy whoesalers possibly the biggest in the country-my pharmacist talked directly to them and her information is that Motofen is unavailable at this time with no release date yet assigned.They did tell her that they might have more information in a couple of weeks.She also contacted customer service at Valeant and basically was told the wholesalers have been informed and should know-the same message I have heard several times.It's very confusing and frustrating and I have no idea what the problem is.Currently Motofen is the most inaccesssible accessible medicine on the market.


----------



## Dixie_Girl82 (May 18, 2009)

BaltimoreGuy said:


> Let us know how it goes dixie !! I am going to make an appointment myself and see what they can do for me I'm just up the road from you in Md/southern PA. Will be coming down to the OBX for the first time this summer if my stomach allows


I hope you are able to get what you can to be able to visit the OBX. I will be there in June myself. It is an amazing place. I am looking forward to it, I need some salt air in my lungs to clear away all my troubles!


----------



## AmandaP (Jan 12, 2003)

Is there anybody anywehere that actually has located motofen? I think we all have to be patient. I gave all info to my pharmacist at Target. He spoke to his rep and they said two weeks! Almost one has gone by. I stopped by yesterday and he looked it up again. He said "at least its on the list now" so that is a good sign. If you want you can call the cust serv # yourself and maybe they can tell you more. As for myself, yes, I'm anxious to get it too. But, after waiting for YEARS - a few more weeks is nothing. At least we know they are making it.


----------



## senior (Aug 10, 2005)

AmandaP said:


> Is there anybody anywehere that actually has located motofen? I think we all have to be patient. I gave all info to my pharmacist at Target. He spoke to his rep and they said two weeks! Almost one has gone by. I stopped by yesterday and he looked it up again. He said "at least its on the list now" so that is a good sign. If you want you can call the cust serv # yourself and maybe they can tell you more. As for myself, yes, I'm anxious to get it too. But, after waiting for YEARS - a few more weeks is nothing. At least we know they are making it.


----------



## senior (Aug 10, 2005)

Amanda-your info from TArget is very encouraging-I went to my target and they couldn't give any information regarding a release date-If one pharmacy would tell me it would be availabe in 2 months I would be satisfied. I have motofen now and am not in desperate need.When Valeant bought out Amarin pharmaceutical and began to produce motofen there was very little confusion. I called Valeant and asked when they would have Motofen available-they said in about a month-in about 3 weeks it was available at any pharmacy -now they might have to order it but my pharmacy had in one day.This is an entirely different situation.I don't think it's a problem with me being impatient but maybe a problem of trusting information that I'm hearing.I will be satisfied when I hear of anyone actually taking a script for motofen into a pharmacy and getting the medication.Just a side note many of the pharmacies I have visited concerning motofen have really taken time to help with the situation.I have really appreciated that -these people are very busy and have gone out of their way to help.


----------



## AmandaP (Jan 12, 2003)

I think its important that you give the customer service number to your pharmacist. And then you have to keep bugging them. The first time I went over there they looked it up on their computer and the drug was not listed. Then they called an old number they had and the message said Motofen had been taken off the market and was dated 2009. Naturally, the pharmacist was leary about the whole thing. Then I brought him my emails that I had printed from what the Rep had sent me. When he saw how serious I was - and on my 6th trip there - he decided to take me serious. This last time he looked it up, Motofen was on the list of available drugs. I will be out of town from May 24th until June 1st. If the drug is not in when I get back - I'm gonna raise some hell with the Rep who assured me motofen was available NOW! You may want to email Cheryl yourself. The pharmacists at Target have helped me very much with other meds. I am relying on them to handle this too. [email protected] Customer Service Valeant Pharmaceuticals North America700 Route 202/206 NorthBridgewater, NJ 08807


----------



## senior (Aug 10, 2005)

AmandaP said:


> I think its important that you give the customer service number to your pharmacist. And then you have to keep bugging them. The first time I went over there they looked it up on their computer and the drug was not listed. Then they called an old number they had and the message said Motofen had been taken off the market and was dated 2009. Naturally, the pharmacist was leary about the whole thing. Then I brought him my emails that I had printed from what the Rep had sent me. When he saw how serious I was - and on my 6th trip there - he decided to take me serious. This last time he looked it up, Motofen was on the list of available drugs. I will be out of town from May 24th until June 1st. If the drug is not in when I get back - I'm gonna raise some hell with the Rep who assured me motofen was available NOW! You may want to email Cheryl yourself. The pharmacists at Target have helped me very much with other meds. I am relying on them to handle this too. [email protected] Customer Service Valeant Pharmaceuticals North America700 Route 202/206 NorthBridgewater, NJ 08807


----------



## senior (Aug 10, 2005)

Motofen exists! I just got a call from WAlgreens and my pharmacist said she has 2 bottles of motofen in her hand-my prescription was filled and ready for pick-up. Last week she was told by her wholesaler it might be available in a month- but nothing definite that it would be available then-she really doesn't know what happened and I really don't care -I'm very happy that it is ready for pick-up. Since it seems now that motofen is back I would suggest to others on this board that it would be worth a try to get motofen from your doctor and see if it helps your particular problem.It has worked wonders for me and I have probably tried mote than 20 medications throughout the years-Sometime I will list all the medications I have experienced and have had minimal success or no success with until I began to take motofen.


----------



## AmandaP (Jan 12, 2003)

I am so happy for you! Yay. You may be the first person to get Motofen this time. I am still waiting to hear from my Target druggist. I cant wait!.....I still feel like I'm dreaming. After over two years off the market - no one ever thought it would be back. I sure hope its now here to stay!!


----------



## Dixie_Girl82 (May 18, 2009)

Amanda, do you know why it was taken off the Market for so long? Just curious.I am still waiting on my appointment on Wed and hoping I will get this new medication.


----------



## AmandaP (Jan 12, 2003)

It is a big mystery why it was taken off the market. Valeant took it off the market for some reason? Then when they went to put it back, the FDA told them they had to do something (what?) to comply with FDA regs in order to put it back. However, the FDA said that it was Valeant that was holding up production. Motofen had been on the market for I think 15 or 20 years prior to this happening. We never did find out the real reason (if there was one.) But, Motofen was not taken off the market because of any problems with people taking it - like Lotronex. I think some people had died from Lotronex misuse and that's why it was taken off. But, its now back. Lotornex is for IBS-D, but I believe there were some people that had IBS-C that used it with bad results.


----------



## jmc09 (Oct 5, 2009)

I think people with colitis or some sort of IBD went on the lotronex trials and this gave the drug a bad name because one or two people died from taking it.


----------



## AmandaP (Jan 12, 2003)

I think people with colitis or some sort of IBD went on the lotronex trials and this gave the drug a bad name because one or two people died from taking it. Yes. I heard that people with IBS-C took it when they heard it was for IBS. I'm not sure why a doctor would prescribe this drug without knowing it was for IBS-C. Lotronex tends to constipate - so if you already have that problem, you are taking a big risk.


----------



## AmandaP (Jan 12, 2003)

Motofen exists! I'm still waiting....Target still hasnt gotten it in. I am going away for one week. If they dont have it by the time I get back, I'll go to another pharmacy. What state do you live in? I am in Florida. I have been going thru Target's pharm, but there is a Walgreens here that I may try next. Does your insurance cover the costs of Motofen? I'm wondering if the price has gone up.


----------



## senior (Aug 10, 2005)

AmandaP said:


> Motofen exists! I'm still waiting....Target still hasnt gotten it in. I am going away for one week. If they dont have it by the time I get back, I'll go to another pharmacy. What state do you live in? I am in Florida. I have been going thru Target's pharm, but there is a Walgreens here that I may try next. Does your insurance cover the costs of Motofen? I'm wondering if the price has gone up.


----------



## senior (Aug 10, 2005)

I live in Michigan-I was in a Walgreens today not the one where I got the motofen- I asked the pharmacist if Motofen was available he said it is still unavailable-my insurance covers motofen. I really am confused as to what is going on with this whole situation.It seens if Valeant really wanted to get this on the market they could expediate this quickly especially in the computer age.One guy I spoke to in cutomer service thought that they meaning VAleant had not updated their web page yet.Something doesn't make sense-maybe your contact can help you understand this more.I wish I could be of more help.When I saw your name on the board today I thought for sure you had got your motofen.Keep us informed as to your progress(hopefully).


----------



## AmandaP (Jan 12, 2003)

.It seens if Valeant really wanted to get this on the market they could expediate this quickly especially in the computer age. It sounds more like the local distributors are the ones that are lax in getting the product. If they dont have a big call for it - maybe they dont make a big effort to stock it? I'm sure they will get it.....eventually!?


----------



## Dixie_Girl82 (May 18, 2009)

Walgreens alerted me that my Motofen prescription is ready for pick up! I will get it this afternoon!! YAAY!


----------



## AmandaP (Jan 12, 2003)

Walgreens alerted me that my Motofen prescription is ready for pick up! I will get it this afternoon!! YAAY! Yaay for you. I hope it works well for you. Let us know. Try it for at least one week before you make any decisions. Did you doctor tell you to take one a day or two a day? (I only take one). I still havent received mine. I leave for a one week trip today so I guess I'll be using Lotronex. My Target guy said he is still waiting for his distributor to get it. I checked with the Walgreens here and they said there would be a wait there too? I dont have much patience left after waiting over 2 years for this to be put on the market. ARRGHH.


----------



## Dixie_Girl82 (May 18, 2009)

Same here! I am not sure on the dose yet. The doctor had called it in to the Walgreens. I think she said I can take 1 or 2, but start with 1. I currently take 2 Lomotil and 1 Imodium everyday. My stomach seems to be doing a little better the last few days, I hope that I am over the slump I was in. I am leaving for the beach in 12 days and I am super worried about my stomach and the long trip. I hope the Motofen will give me the extra comfort and security I need to make the trip without worrying about the Lomotil not working.


----------



## AmandaP (Jan 12, 2003)

I currently take 2 Lomotil and 1 Imodium everyday. I have never had to take anything else while on Motofen. I was only taking 1 a day when they took it off the market. At that time I had been taking it for 3 months. I think if I had continued past that time, I would have gone to two a day. I know some people that take 6 or 7 a day. I dont want to get to that point. When I know I am going to be at home or around the house or neighborhood, I dont take anything, hoping to give my system a relief from it all. Most of these meds bind you up by taking all the liquid from your system. I have found that I need to drink more water and I also try to eat at least one salad or one apple every day to keep everything moving.


----------



## Dixie_Girl82 (May 18, 2009)

I do the same thing. If I know I am going to be at home I will not take anything and give my system a break as well.However, if I was to even look at a salad, my stomach would hurt! I dont have any problems getting constipated or being bound up. I have to be careful what I eat, even when I take my medications. Sometimes I will take much more than needed if I know I am going out to eat or something like that, just to make sure I will be ok. But even then, the next morning, I pay the price


----------



## AmandaP (Jan 12, 2003)

I dont have any problems getting constipated or being bound up. But even then, the next morning, I pay the price







Unfortunately, this is what happened to some of the people that took Lotronex years ago (before it was taken off the market). The people liked being constipated and not having to worry about have D in public. But they had severe results. Its not good for your intestines or bowels. You have to have a cleanout. And if I take Imodium for more then 3 days in a row - I get backed up to Chicago - and then a huge explosion with NO warning at all. Its terrible.


----------



## Dixie_Girl82 (May 18, 2009)

Yeah I agree. I dont normally take more than needed. But even when I do, I still get cleaned out the next day. I honestly cant remember any time at all in my life that I have been "constipated". Even if I take more medication than needed, I still have diarrhea in the mornings. Never fails.


----------



## Dixie_Girl82 (May 18, 2009)

Bad news







The pharmacy does not have the Motofen yet. The message they sent me was saying that they have received my prescription request but still does not have any in stock. The pharmacy manager at Walgreens knows me well and knows how bad off my stomach is right now, so he is doing everything he can to get it. He called me just a few mins ago and said he spoke with the Valeant company and they are supposedly in high demand for the medication and it has not been shipped out everywhere just yet. He said he put in a special request and hopes to have it within 3 business days! Richard is really nice and I trust him that he is doing everything he can to get the medication for me. I will keep you all posted.


----------



## AmandaP (Jan 12, 2003)

I just spoke to the pharm at Walgreens here and the gal was quite nasty. She said she called her distributors and they do not stock the drug. She never even tried to ask them to stock it for customers. I told her "So, if a customer comes in with a script and you dont have it - you dont even TRY to get it??" She said she called the distributor and they said they didnt have it - end of story. I told her I could give her the number for Cust Sr at Valeant - but, she said she only got stuff from her distributor. I told her I would not be filling any of my scripts there for anything!! The people at Target have been at least trying and they did have their distributors call the Valeant Cust Ser. The gal that first contacted me is away until tomorrow and I leave today for one week myself. So I guess nothing will be happening here for another week. I do hope you get your pills before you go on vacation!


----------



## Dixie_Girl82 (May 18, 2009)

Meeeeee toooooo!! I still have 12 more days before I will leave for vacation, so hopefully they will have mine before then.


----------



## BRAD B (Dec 15, 2005)

Man what a mission, I have talked to my CVS pharm. that I usually get my scripts from another local pharm. that specializes in hard to get drugs and compounding and my insurance mail order pharm. all with the same result(also walgreens). NO LUCK! I then called Valeant again and spoke to a nice lady that was mad that "us" the customers had to do all the leg work trying to get this drug. All three pharm. are suppose to be going the extra mile for me and calling there suppliers and finding out why they don't have it in stock yet. Valeant sent out a info package to all suppliers on May 2nd supposedly saying motofen was available again. Who is telling the truth??? On the topic of meds I dont know if I have it better or worse then you girls. I take more meds but some what have my issues under control lately for my daily life that I have to do. I still have the anxiety issues and needing the familiar surroundings to feel comfortable. I used to have very very bad mornings trying to get to work with no bathrooms in spots. What I found has worked for me is taking a lomotil and .25 xanax 4 times a day. When I get up 430am, aournd 10am, 5pm and when I go to sleep at around 10pm. The biggest thing that helped me was starting to take the meds at bed time it has helped my morning drive greatly. I found taking my meds 1 to 2 hrs before I eat works the best for me.


----------



## Dixie_Girl82 (May 18, 2009)

Pretty much the same here Brad. I can normally get through the day pretty well. The mornings are rough but once I get through those first few hours, I am normally ok for the most part. Other than the anxiety issues. I also take Xanax once in the morning and once at night, and it does seem to help with my travel fears. And the Lomotil works if you take it in time. I normally take 2 to start off with in the morning along with am Imodium and then take another Lomotil one hour before late day meals. I have noticed a difference since I have increased my dose on that. I just wish I could get my anxiety under control, before I get a speeding ticket!


----------



## BRAD B (Dec 15, 2005)

Good news I hope!Well here is the latest. I called the CVS Corperate offices the other day to see what they could do since the local CVS pharmacy wasnt getting anywhere. They called back last night and I spoke to a lady from the corp. pharmacy dept. and explained the situatuion. She said she would look into it for me. Today I got a call from a local CVS and the pharmasist said for some reason the supplier couldnt get it. He had to call Valaent directly and was able to order it. It is being drop shipped to his store (guess that means bypassing the supplier or their warehouse stock) and Valaent said it should be in his store in 3 to 5 days. Im keeping my fingers crossed. Brad


----------



## Dixie_Girl82 (May 18, 2009)

good luck Brad!! I still have not heard anything back from Walgreens. I was told that very same thing on Monday and still no Motofen







I am going to call them back today and worry the #### out of them. I am leaving for the beach in 8 days and I need my medication!!


----------



## AmandaP (Jan 12, 2003)

I guess the best thing would be to email or call Valeant and explain the problems. Maybe they are the ones that have to get the product to the distributors. I am away from home right now. But, I will return on Tuesday next week. If my Target Pharm does not have it - I am going to start bugging Valeant. I'm sure they sent out a message to the pharms that Valeant is available but if the pharm didnt have any customers asking for it they probably didnt bother with it. They must get lots of these messages daily from pharm companies. I think once we get one order and our pharms know we will keep reordering - then they should be able to keep a better stock.


----------



## AmandaP (Jan 12, 2003)

I emailed the gal at Valeant that was the first one to contact me that Valeant is back on the market. This is her most recent response (May 24). hello: I'm sorry you are having trouble, but the wholesalers can definitely get this product if they order it. Please ask your Target pharmacist to contact his distributor again and say this product is definitely available now from the manufacturer (Valeant) and they can call our Customer Service line at 800.321.4576 if they need verification and information. The NDC that is available is 0187-0500-02 and it is the 100ct bottles. Having the NDC available might help. Please feel free to pass this toll-free number on to any pharmacy that says they cannot get this product. Thank you!Cheryl


----------



## AmandaP (Jan 12, 2003)

Below is another message I received from the rep at Valeant. Please let me know if any of you have gotten a script at your pharmacy. I still have not received it from Target.I'm so sorry that you are still having trouble! I checked the major wholesaler inventories (the few I have access to) and I see the following:Cardinal Health - They have some bottles in stock and have also ordered more this week.McKesson - They have none in stock, but just ordered some this weekAmerisourceBergen - they have ordered small quantities so far, and have just a couple of units in stockSmith Drug (Smith is a smaller wholesaler in the south) - they have ordered a small amountMorris & Dickson - they have ordered a small amountI'm not sure who your pharmacy orders from, but the first three on the above list are nationwide, and are the largest by far of the wholesalers. So even if each local distribution center does not stock this product yet, they would all have access to order from any of the above. I'm guessing that Target purchases from one of the above.As I mentioned, please feel free to provide our customer service toll-free number to Target or Walgreens, or any other pharmacy, and we can confirm with them which wholesalers we have as customers. Anyone who buys from us can purchase NDC 0187-0500-02. I hope this helps. Take care,Cheryl


----------



## Dixie_Girl82 (May 18, 2009)

I spoke with the Pharmacy manager about it on Friday. He said he ordered it, got an order number and a confirmation number, he is now waiting for it to come in. He said they told him 3-5 business days, and today is 5 days since he ordered it. I hope it gets here soon, before I leave for vacation in 4 days.


----------



## AmandaP (Jan 12, 2003)

I hope you do too!! My pharm told me a month ago it would take two weeks to get it. Still dont have it?? Good luck!


----------



## Dixie_Girl82 (May 18, 2009)

I just picked up my Motofen Cost $45 at Walgreens. Directions to take 1 pill 4 times a day. Sounds like an awful lot of medication to take. Used to take only 2 Lomotil and it would last all day. Anyway, I will start taking it tomorrow. Will keep you all posted.Wish me luck. Heather


----------



## Dixie_Girl82 (May 18, 2009)

This question is for those of you that have taken both Lomotil and Motofen. Is Motofen really better? The research I have seen on the Internet show that they are very similar drugs. I am just trying to get some sort of idea on what to expect. I have been on Lomotil for years and it worked pretty good up until recently. I hope the Motofen helps get me back on track. I am really nervous.


----------



## BRAD B (Dec 15, 2005)

Ah you beat me to it I just got home from picking mine up. Start off with what the doc. prescribed and then tailor it to your needs from there. Good luck. Its not a miracle drug but I it works much better than lomotil. Hey if you need less, the prescription will just last you longer than a month. The max. dosage per the manufacture is 8 per day.


----------



## BRAD B (Dec 15, 2005)

"This question is for those of you that have taken both Lomotil and Motofen. Is Motofen really better? The research I have seen on the Internet show that they are very similar drugs. I am just trying to get some sort of idea on what to expect. I have been on Lomotil for years and it worked pretty good up until recently. I hope the Motofen helps get me back on track. I am really nervous."From: http://en.wikipedia.org/wiki/MotofenLast sentence second paragraph. "This combination medication should not be confused with Lomotil (2.5 mg diphenoxylate and 0.025 mg atropine - a Schedule V Combination), because the active ingredients in the two medications are different compounds, except for the inclusion of atropine. Motofen is approximately 2 to 4 times more effective in treating symptoms than Lomotil."


----------



## Dixie_Girl82 (May 18, 2009)

Thanks Brad. I am glad the pharmacys are getting the medication. And thanks for the info on the Motofen. I feel better now about taking it. I will keep you all posted on how it is doing. Good luck and hope your symptoms improve as well. Heather


----------



## AmandaP (Jan 12, 2003)

I went to the pharmacy at Walmart today and they said that Motofen is back ordered and no date on when it would be available. This is terrible! I want to pull my hair out. Its been almost ONE MONTH since I started trying to get this med. I have taken both Lomotil and Motofen and Motofen is by far the better drug. I dont know your circumstances, Heather, but if I were you, I'd start with only one a day in the morning before you eat anything. I still only take one a day and it works just fine. Let us know how you make out with it. But, pack your Lomotil and Imodium along with you on vacation. (just in case).


----------



## AmandaP (Jan 12, 2003)

Cost $45 at Walgreens. Is that with or without insurance? And is that a one month supply? (how many pills?)


----------



## Dixie_Girl82 (May 18, 2009)

With insurance and I got 1 month 60 pills.


----------



## Dixie_Girl82 (May 18, 2009)

Shows full price of medication is $69.19 for 60 pills.


----------



## BRAD B (Dec 15, 2005)

Doctors can write scripts as Example: take as directed up to 6 tablets per day and it will be the same copay amount. whether you are prescribed 60 or 180 tablets per month. This med is expensive because there is no generic.


----------



## Dixie_Girl82 (May 18, 2009)

So far so good. I took 2 Motofen after a horrible morning and I feel great. I had a light lunch with out a single stomach cramp and no gurgling. Hope this keeps up! I might be able to gain my confidence back just yet.


----------



## Dixie_Girl82 (May 18, 2009)

Hey Brad, how many Motofen do you normally take in one day to get through the day?


----------



## BRAD B (Dec 15, 2005)

I cant say with the Motofen because I haven't taken it for a couple of years but I am going to stick with the same amount I was using for the lomotil to start. Which is 4. One when I get up, one when I go to sleep and one about an 1 1/2 before both lunch and dinner. I have found this works for me. I have found that when I dont take a dose because I think I am feeling good it comes back to bite me later. Brad


----------



## AmandaP (Jan 12, 2003)

Brad: When you were taking Motofen before, how long did you take it (years?) and do you remember how many you took a day? 4 tabs a day sounds like a lot to me. Motofen seems to be a stronger acting pill then Lomotil.


----------



## BRAD B (Dec 15, 2005)

Amanda,I really don't remember how long I was taking it. Probably was between 1 to 2 years. I think I maybe took 2 or 3 day. I used to take my D meds on an as needed basis but found I would feel good then have emergencies without warning which only added to my anxiety and fear of getting sick or having my mind make me feel sick in uncomfortable situations and places. Now I take them as a set maintenance dose whether I feel like I need it or not and I have been doing better and my aniexty is not as bad and hopefully getting better.


----------



## AmandaP (Jan 12, 2003)

I only took Motofen for about 3 months before it went off the market. After a few months I was able to get a generic from NY, but then they took that off the market too. During these 6 months I was only taking one a day with no bad times unless I ate something that really was bad for my intestines. But, I did think that if I had continued to take Motofen past the 6 months, I probably would have gone to two a day. I too would rather take the meds on an ongoing daily basis - but, because of not being able to get this med for years - I have never had the chance. I'm not sure I would ever want to get up to 6 or 7 a day, and that is why I feel I need to take a break from the pills once in awhile. I hate being dependent on anything - especially if it appears that over a long period of time, the med intake amount may go up and up. I guess time will tell.


----------



## Dixie_Girl82 (May 18, 2009)

With the Lomotil I used to get up in the morning and empty myself out then take 2 pills and I would not go for the rest of the day. I am trying the same schedule with Motofen and so far so good. If I know I will go out for dinner or something I may take one more for good measure. Any of you ever tried it that way. When you take it in the morning before you use the bathroom. How does that work. I think it would stop me up.


----------



## AmandaP (Jan 12, 2003)

I have found that most IBS meds must be taken Before a meal not after. I always try to have a BM in the early a.m. before I take any meds. Sometimes it doesnt work that way - but, for the most part - it does. I dont like going for more than one day without a BM - I dont think its good for my system. When on Lotronex - I sometimes have to eat a big salad or an apple to keep myself moving as Lotronex stops me up. I havent had that problem with Motofen. When I go out for dinner - I sometimes take "Nulev" before I eat. It seems to coat my stomach for 3 or 4 hours and I dont have to worry about getting back home from the restaurant. (it depends what I'm eating, of course) I try to book all my things during the day (like hair, doctors, dentists, etc) for late afternoon. But, if I do have to do something in the morning - I may have to take the med before I have a BM. That sometimes throws me off my schedule - but, nothing much you can do about it. I hope the Motofen works well for you while you are on vacation! Let us know when you get back. Good luck - have a great time!


----------



## Dixie_Girl82 (May 18, 2009)

Thanks Amanda. I hope it works out too. I am pretty nervous about it but I will do the best I can to make this vacation a good one! Thanks for all your advice and the updates on the Motofen. I really do appreciate it.


----------



## AmandaP (Jan 12, 2003)

I do relate to your travel concerns. Last summer I was in Europe all summer. I traveled mostly by train because they have bathrooms on most cars. But, several times I was driving in heavy traffic for hours and I was in a panic the entire time. I was also at many churches and cathedrals that had thousands of people and only a few toilets. Its really so hard to enjoy yourself when you are constantly worried about where the toilet is located. I was on the beach many times during this trip and never put on a bathing suit. I had to wear capris & Depends in case of an accident. It wasnt much fun at the beach. Over the years I have had many accidents in public. I try not to cancel out on vacation plans. I dont want to live the rest of my life in the bathroom. I still dont think doctors take this IBS problem seriously enough. Hopefully, with Motofen and all your other meds - you will be able to enjoy yourself!


----------



## Dixie_Girl82 (May 18, 2009)

Me too. As bad as my stomach has been lately, I dont even leave the house without wearing Depends anymore. I too have had several accidents where I could not make it to the bathroom. Luckily, I was alone all those times and didnt have to deal with the embarrassment. My husband is very supportive and understands so I know he will not give me grief and make me feel bad. However, I do think he gets scared sometimes when I am driving faster than the speed of sound to get to a bathroom. Thank God for that V8 in my Jeep







But he is a trooper, never complains. I need this vacation so bad, so I am going to do my best to enjoy every minute of it. Between work and school, I rarely get free time anymore and a week on the coast is just what the doctor ordered. My husband got me a new iPad for our anniversary and I have downloaded several games to keep myself busy on the trip! Even if I drive, I found some games that are team based so we can play together. So hopefully, everything will work out just great. So far the Motofen is working pretty good, I am just trying to get a good schedule worked out with it so I am more comfortable. Thanks again for all your support! You have no idea how much it means to me


----------



## AmandaP (Jan 12, 2003)

I always like to be the driver. I feel better if I am in control of the car. That way I know I can always drive directly to the closest toilet (or bush). When others are driving - and I say I have to use a toilet - they appear to be driving in slow motion. They dont understand that now means N O W !! I dont have a sig other - but, I have a good friend that has traveled with me. He is an over the road truck driver. Once when he was driving - he got the flu - he had an accident in his pants because he couldnt get out of traffic and to a toilet in time (hard to park those 18 wheelers). Anyway, he had to drive 5 hours like that before he could get home and change because he didnt even have a change of clothes with him. Now he UNDERSTANDS. (I always have a change of underwear in my car and Depends in my purse) just in case. I have traveled with a few friends at other times and I could kill them when they say "you have to go AGAIN?!" (sigh). You are lucky to have a husband that understands. I'm sure relaxing on vacation will also help you. Try to find a beach or pool access that has bathrooms close by. Even if you dont need them, its always nice to know they are there.


----------



## Dixie_Girl82 (May 18, 2009)

I understand every word you just said! I swear, I do the exact same thing. When I drive, I feel better because I am in control and I know how fast I need to drive to get to the bathroom. I have a change of underwear and pants in my car and Depends in my purse as well with baby wipes...just in case! After having a few accidents, you prepare for the worst, always. And our rental is water front so I wont even have to leave the beach house to enjoy the water. That is a must have for me, if its not water front and I have to leave to go to the beach, not happening. If I need to use the bathroom, I just go in the house. And yes, I am lucky. I have a wonderful husband and I love him more each day. He has been there through thick and thin and no matter what, he is always by my side. We have been together for 7 years, married for 3 years. He is truly my soulmate! He helps me through my bad days and his support alone keeps me going most days when I just want to give up and never leave the house again. He tells me all the time, "Dont let it win! You are stronger than this condition, dont give up and keep going!" He makes me laugh when I am crying and will even sit in the bathroom with me sometimes to keep me company and talk to me....that is LOVE! And that same thing happened to my husband over Christmas last year. We both had the flu and he sneezed and messed up his pants. So he understands as well.


----------



## AmandaP (Jan 12, 2003)

Beachfront condo with easy bathroom access sounds like a perfect vacation. I just moved here to Florida from Colorado. But, most of my life has been spent in So Calif. I am a sun and beach person - so I love it here. What I dont like is no public toilets at the beach. We had alot of them at the beach in Calif. I had to search up and down the beach area here to find a small park on the beach that also had restrooms. My big gripe everywhere is lack of public bathrooms. And I hate that business owners will not allow you to use their toilets unless you buy something. In Europe they not only wont allow you to use the toilets in restaurants unless you are eating there - they virtually have few if any public restrooms on the streets where you shop and go to local sights.


----------



## Dixie_Girl82 (May 18, 2009)

Oh wow, that sucks! I most def plan my vacations and stuff like that around bathrooms. There are a lot of resurants around here that are like that too, wont let you use the restrooms. Makes me ill! So I vacation to the same place every year and I know the area pretty well and where the bathrooms are. And I dont plan on eating out very much while on vacation this year so I will probably stay at the beach house most of the time, which is perfectly ok with me! I am taking my dog (my best friend) and we are going to lay out in the sun all week!


----------



## AmandaP (Jan 12, 2003)

This is a reply I received today from the Valeant Rep. in response to an email I sent her regarding people not being able to get Motofen from their Pharms.June 3, 2011I'm sorry you and others are still having trouble, but here is what I can tell you as of today. I contacted the pharmaceutical buyers for AmerisourceBergen, Cardinal, and McKesson, and all have purchased Motofen from us and have promised to stock it in any locations that have received requests. The minimum quantity a wholesaler needs to order from us is only 12 bottles, but then they can break this up any way they want to provide to the pharmacies. I know they don't require the pharmacies to order full cases, because they send as few as 6 bottles to their own Distribution Centers (DC), and so wouldn't even have a full case at an individual DC. Some specifics that I know right now are:McKesson: is sending 6 bottles to their DC's in Atlanta, Lakeland (this might be you!), and Birmingham, because all of these locations have requests. They will supply to any DC's who show demand.AmerisourceBergen: The item is listed as active, and the buyer sent my email to all of their DC's and asked them to let her know if they have any requests. She will send stock out accordingly. She also said to encourage any of their customers to contact customer service at their servicing DC and request the product.Cardinal: the buyer is checking to make sure this product shows as active in all of their system, but they have purchased a significant amount from us already.As I mentioned, the smaller regional wholesalers also have access to this product, and some of them have already placed orders and received stock. I think the pharmacies just need to take the extra step to contact their distributor.I hope this helps and I hope this is resolved soon!Best regards,CherylValeant Rep


----------



## AmandaP (Jan 12, 2003)

I picked up my script for Motofen today at the Target pharmacy! So it does exist and its out there. You just have to keep beating up your druggist and his distributor to get it for you. I got a 3 month supply for $ 165. Insurance would not pay it. But, next I'll be chatting with them to see if I can get them to pay. Good luck to everyone else out there that is trying to get Motofen. And for those with IBS-D that have not as yet used Motofen - I encourage you to talk to your doctors about it.


----------



## Dixie_Girl82 (May 18, 2009)

Glad you got your medication!


----------



## AmandaP (Jan 12, 2003)

Are you on vacation now? How are the pills working for you?


----------



## jmc09 (Oct 5, 2009)

You are lucky that in the US you at least have a few options for controlling your IBS,Lotronex,Motofen,Loperamide,Lomotil,Codeine,while all we have are the last 3 and if they dont work you're in trouble.


----------



## AmandaP (Jan 12, 2003)

We can buy meds from other countries - why cant you!? With Motofen back on the market, eventually the mail order houses online will carry it - like in Canada.


----------



## jmc09 (Oct 5, 2009)

AmandaP said:


> We can buy meds from other countries - why cant you!? With Motofen back on the market, eventually the mail order houses online will carry it - like in Canada.


Problem is Amanda that a lot of us qualify for free prescriptions and having to pay for medicines is not really an option.


----------



## AmandaP (Jan 12, 2003)

Yes. I understand. My medical ins wont pay for mine either. But, this is a big deal for me and I'm willing to pay for it. If it wasnt for drugs like Motofen and Lotronex - I'd never leave my house.


----------



## jmc09 (Oct 5, 2009)

In some ways im glad we dont have the US health system here in the UK but we miss out on the likes of lotronex and motofen instead.


----------



## BaltimoreGuy (Mar 16, 2009)

Hello all.... How is the Motofen working for you folks ? I have tried a bunch of prescripitons that have not worked for me but I am thinking about trying Motofen. I just called my local walmart and they said they can get it within one day But i'm not sure If I wanna spend the big money to try it. My insurance will not cover it at all. Just wondering how it is working for you all ! Hope it is doing great !


----------



## AmandaP (Jan 12, 2003)

All of us that are getting Motofen have used it before it was taken off the market. We are all happy to be using it again. Maybe you can just get a one month's supply and see how it works for you? Talk to your doctor about it. Maybe he can get you some samples.


----------



## Dixie_Girl82 (May 18, 2009)

I have been doing pretty good with the Motofen so far. I have noticed that I have to take it more often then I had to do with Lomotil. I have even gone back to Lomotil on some days while on vacation because the Motofen does not last long. When I take them both together, works like a charm, every time! The Lomotil seems to last longer for some reason. I am about to go out to eat for the first time since I have been here at the beach and I hope it all goes well. I am so nervous I am shaking all over. My husband is giving me extra moral support so hopefully all will go well. Its my favorite seafood restaurant and I eat here every year, and I really want some shrimp and crab legs. I hope all this is worth it!Overall, I have seen less side effects of the Motofen. No bloating or cramping while on it. But it does not last very long for some reason. I will keep taking it though, it has only been a week since I have been taking it. Maybe it will take a while to build up?I would suggest to anyone to try Motofen. It works FAST! I can be sick with horrible cramps and diarrhea and within 30 minutes of taking the Motofen, it stops and I feel better. But like I said, it does not last all day. So I take one before each meal, and so far, I have been doing pretty good.Wish me luck on my dinner tonight, GOD I am so scared


----------



## AmandaP (Jan 12, 2003)

I guess all of our systems are different. Lomotil did nothing for me. Maybe if you take a Lomotil in the morning and Motofen in the afternoon - it will work better for you. Have you ever taken Lotronex? I hope you enjoyed your dinner!


----------



## BRAD B (Dec 15, 2005)

Hey all I have been taking it now for about a week again. I'm doing good. I am staying on the same dosing method as I described earlier. I take it on a set schedule whether I feel I need it or not and it is working for me. Staying on my schedule is really the key for me. I refuse to say more than that because I don't want to jinx myself







.Dixie, sorry it doesn't seem to work long for you I never really noticed that. Hope you have an enjoyable dinner tonight. P.S. I have found that I think butter is a trigger for me but shrimp and crab legs sound so good. The difference I feel between Lomotil and Motofen is that Motofen seems to lessen the urge and cramping I get when I get the warning that I have to go to the bathroom till I get there.


----------



## Dixie_Girl82 (May 18, 2009)

Amanda. I have not ever tried Lotronex. They said that medication is a last resort for me. My dinner went ok. I had shrimp and crab legs. And Brad butter is a trigger for me to so I don't use that sort of stuff. I had garlic potatoes with chese and bread. I did have a bad panic attack on the way home because my stomach was cramping and I was unsure that my stomach was going to be ok. It ended up just being gas and I was fine once I got home. My husband took good care of me so no worries. However I wish I could get a better grip on my anxiey. Xanax works ok but sometimes it's not enough. I take .025 mm every 8 hours. Thanks for all the advice and kind words you guys. You have no idea how much it means to me to have friends that understand what I go through everyday. I still have 2 more days of vacation left. I have been out shopping and eating. I am starting to regain my confidence. Slowly but surely. And thanks to you guys always being there for me. I am going to enjoy myself and thank God that I am getting stronger everyday!!


----------



## AmandaP (Jan 12, 2003)

I have not ever tried Lotronex. They said that medication is a last resort for me. I'm not sure why Lotronex is a "last resort" for you? My Gastro Dr recommended it for me. And it works very well. Its just very expensive. You should also ask your Gastro Dr about taking "Nulev" (Hyomax-SL0 0.125 mg). You put one pill under your tongue about 1/2 hr before you know you are going to eat something that is going to be hard on your digestive system. I also take it if I'm going out for dinner. I dont know how it works, but I'm usually good for 3 or 4 hours after I eat. That means I can enjoy a meal out at a restaurant and not have to worry about getting home. I stay away from fried foods, spicy foods and tomato sauces. But, when out for dinner - I just gotta have it. Ya know what I mean? And sometimes - all it takes is a big crunchy salad to have me running to the bathroom.


----------



## MotofenSteve (Jun 27, 2011)

Has anyone had an actual refill? Or are you still waiting for it to be ordered? Man I hope this is true. I asked my Dr for a Rx but the lady who answers the phone at his office is so mean and rude to me. She stalled all day and wouldn't let me talk to him and at the end of the day she said oh hes gone and will be on vacation until the 5th. Now I have to wait til then. He is the best doctor and that is why I put up with her since this is a recurring thing. He was always very helpful in finding the medicine for me when it was off the market and is a real good guy. Dr. Moran.I will wait but I am wondering if anyone has had this medicine since it was put back on? Anything different about it?Motofen is the best medicine for IBS.FYI I am motofensavedme, if anyone remembered that screen name on here but I lost my password info.


----------



## AmandaP (Jan 12, 2003)

Almost all of us have used Motofen before it was taken off the market. Once we found out that it was back for sale, we all went and got new prescriptions from our doctors. I think we all have it now. I hope you get yours soon. Some of the drug stores drag their feet getting it because they dont know the drug very well. But, be persistent and keep asking thme for it.


----------



## BRAD B (Dec 15, 2005)

Yes I got mine filled several weeks ago. Good luck.


----------



## Dixie_Girl82 (May 18, 2009)

Motofen is still working great. I still have a few bad days, but the Motofen sure takes a big chunk of the symptoms away. I am amazed at how fast it works! I can be sick in the morning and take 2 Motofen and I swear within 30 mins, I feel so much better.


----------



## AmandaP (Jan 12, 2003)

I'm happy to hear Motofen is working for you and got you thru your vacation. I wish more people would try this drug as it sure has helped me too.


----------



## BaltimoreGuy (Mar 16, 2009)

Well I found my Motofen... I got the last 30 pills that Walgreens had in Maryland







It has been working very good for me ! Almost to good if thats possible.... The only problem I'm having is I get so stopped up that I have to give it a day or two of rest and when I do.....Oh boy is the bathroom my best friend... I just empty out.My doctor told me to take it on a as need basis and I have been. She said to much can cause alot of side effects. I was wondering how you all are taking it. I don't want to back myself up to bad but I am going on vacation starting tomorrow and I have a 6 1/2 hour ride from Maryland to the outer banks of North Carolina ! I know I am going to need it for the ride but I am also going to need it for all the family outings.... Any suggestions ?


----------



## AmandaP (Jan 12, 2003)

It depends on how many Motofen you are taking a day. Maybe you are taking too many and that's why you are getting stopped up. I make sure I have at least one BM a day and that's usually in the morning after a small breakfast and coffee. I had more problems with Lotronex and constipation. I had to make sure I was eating at least an apple or salad a day. Its easy to forget whether you go or not because we IBS-D people dont mind having a day free of a toilet. But, I dont think its a good idea to allow your system to stop up for long because you then have a big explosion.


----------



## AmandaP (Jan 12, 2003)

BTW - Baltimore guy - I dont believe Motofen works as well taken on a "need to" basis. I take one a day in the a.m. and I'm lucky that for now that one pill works for the day with a normal BM the next morning. I think our bodies get confused if we take them only once in awhile. Thats ok for Imodium, but with Motofen - you want to keep you body regular.


----------



## senior (Aug 10, 2005)

AmandaP said:


> BTW - Baltimore guy - I dont believe Motofen works as well taken on a "need to" basis. I take one a day in the a.m. and I'm lucky that for now that one pill works for the day with a normal BM the next morning. I think our bodies get confused if we take them only once in awhile. Thats ok for Imodium, but with Motofen - you want to keep you body regular.


----------



## senior (Aug 10, 2005)

Baltimore Guy- My gastro doc advised me to take motofen on a daiy basis not on a need to basis-just what Amanda said-Motofen very seldom causes constipation-you have to use motofen on a trial and error basis to determine the amount that will keep your system in control-I usually take one to one and a half daily and I'm pretty good-there are exceptions occasionally-the most I have ever taken in one day is three- I know someone with chrons who takes six motofen almost every day but is never constipated-good luck.


----------



## XXXBerto55 (May 4, 2010)

You all convinced me too, picking mine up today!


----------



## AmandaP (Jan 12, 2003)

Let us know how you do with it. Good Luck !!!


----------



## nrep (Jun 19, 2007)

AmandaP said:


> Lotronex works very well, but I can only get it 3 times a year because of the expense. So I can only take it for special occasions. You just have to be careful you dont get constipated. You have to keep check of your BM's daily. If you dont go at all, you have to eat some fiber - like a big salad. I never had that problem with Motofen. I hope it works for you.


Hi Amanda,You may already have done this, bust in the case that you hadn't, I was prescribed Lotronex a few times over the last 3 years and both times my doctor signed me up for the patient assistance program where I received 1 month free, and then subsequent months for a drastically reduced price. In exchange I filled out a questionnaire. It sounds like you are looking further into Motofen, which I will also look into, but if that does not work out, or not for a while, and if you hadn't been enlisted in the Patient assistance program, I would suggest that. Also, since this was some years back, and I haven't looked into it since, I dont' know if the assistance program is still in effect. http://www.lotronex.com/Savings-Program/ Either way, good luck.


----------



## MotofenSteve (Jun 27, 2011)

As soon as my Dr gets back from vacation he will sign my prescription and hopefully the pharmacy has it so I will get it as fast as possible like tomorrow. I have been taking it since I turned 21 and it changed my life. Makes everything easier or normal. I used to take it daily in the morning and as I felt sick or got sick I would take it. So I would use the bathroom every morning and sometimes during the day and night but I was on a regular schedule it was amazing. What is the most anyone has taken during one day? Baltimore guy you got the last 30 in MD? That is prob because i got every last motofen pill that was in this area since it was taken off the market. I went all over MD, to VA, to DE and even PA to get them. The PA walgreens had them shipped from all over the US for me to their location they were the best. Then they found 400 in Tenn but were unable to sell them to me because they were expired. Oh that sucked. What a journey I have gone through these last 2 years. It is not over yet so I am still marching until this week.


----------



## AmandaP (Jan 12, 2003)

What a journey I have gone through these last 2 years. It is not over yet so I am still marching until this week. I hope you dont have to march too far or too long. I know what you mean about looking for every last pill when it went off the market. I didnt travel to any other states, but I went to every pharmacy in my town and bought everything they had. A few people had beat me to it so I didnt get many. I also spent hours, days, weeks, months on the internet trying to find an online pharmacy that carried it. But, no luck there. I even tried in Europe and Canada but nothing there either. We did get some compounding pill company to make us some generic Motofen in New York and ship it to us - but, only for about 3 months when the FDA stopped them. What have you been taking for the last 2 years? I have been alternating between Lomotil and Lotronex. I only take 1 Motofen each morning. But, I know of people that take up to 6 or 7 a day. I hope I never have to take that many.


----------



## MotofenSteve (Jun 27, 2011)

AmandaP said:


> What a journey I have gone through these last 2 years. It is not over yet so I am still marching until this week. I hope you dont have to march too far or too long. I know what you mean about looking for every last pill when it went off the market. I didnt travel to any other states, but I went to every pharmacy in my town and bought everything they had. A few people had beat me to it so I didnt get many. I also spent hours, days, weeks, months on the internet trying to find an online pharmacy that carried it. But, no luck there. I even tried in Europe and Canada but nothing there either. We did get some compounding pill company to make us some generic Motofen in New York and ship it to us - but, only for about 3 months when the FDA stopped them. What have you been taking for the last 2 years? I have been alternating between Lomotil and Lotronex. I only take 1 Motofen each morning. But, I know of people that take up to 6 or 7 a day. I hope I never have to take that many.


I have been taking Lomotil or the generic Diphenoxylate atropine. I was mixing that for a while with Paregoric which taste horrible but it actually helped. That went off the market too and I could no longer get it. I was forced to take Lomotil and Imodium. If I was really sick that day I would take as much as I needed to make me OK. It has got me by but nothing compared to Motofen. I still get sick all the time. Not as much as I would if I didn't take anything so better then nothing. With Motofen I would take 2-7 per day depending on how sick I was throughout the day. I am a Personal Trainer so keeping appts is my job. With Motofen I had no problem. I wasn't sick once it was perfect. Its like its too good to be true. I can go and do anything without any problems. Even the worst things for people like me which is a long car ride early in the morning with a car full of people in traffic. That was no longer a problem I was fine. I still wouldn't(still won't) eat in the morning because breakfast food still makes me sick from past experience but I could eat throughout the day and be fine. So when I get it again life will be good.Just talked to Walgreen's they said my Dr sent over the prescription and they will hopefully have it tomorrow. Oh man I can't wait for life to be normal again.


----------



## MotofenSteve (Jun 27, 2011)

What do all the new people taking Motofen think? Hopefully if we get enough people taking it then it won't go off the market again because of cost or whatever the reason was because there really wasn't one as I remember.


----------



## AmandaP (Jan 12, 2003)

Even the worst things for people like me which is a long car ride early in the morning with a car full of people in traffic. I sure know what you mean. Even now - on Motofen - being stuck in traffic is a mind bender for me! I am hoping that new people taking Motofen do well with it and pass on the info to others. We users have all been amazed at how little doctors know about this drug. I found out about it from the IBS forum several years ago. I'm still thinking more than half of the people on this forum have not tried it. Even pharmacy distributors dont seem to know about it. I think Valeant needs to get more reps out to the Gastro doctors offices to get it moving. I'm not sure why this drug was removed from the market. Valeant said it was due to the FDA restrictions and the FDA said it was a problem with Valeant. I guess we will never know. I just hope its here to stay.


----------



## MotofenSteve (Jun 27, 2011)

Another road block. Walgreens said they accidentally ordered the old Motofen, I guess the Motofen that was discontinued???IDK They now say it will be on the truck tomorrow. Ahhh frustrating.


----------



## Dixie_Girl82 (May 18, 2009)

Steve, I went through the same thing with my medication. My prescription ran out last week and I have been waiting on a refill for 9 days







Still dont have it in yet. I too, am very frustrated. The Lomotil is holding up ok I guess. I have had more bad days on the Lomotil than I was with the Motofen. I will be glad when my refill is ready to be picked up


----------



## AmandaP (Jan 12, 2003)

[they accidentally ordered the old Motofen, I dont think there was any "old Motofen" left on the shelves. I think they are just stalling.


----------



## XXXBerto55 (May 4, 2010)

So I got the Motofen Saturday, took it on my way to a BBQ, all was good. Didn't actually go the rest of the night. Had some cramping, thought I had to go, but no go. Sunday I took one in the morning and one at dinnertime. Pretty much stopped me up and had some phantom bathroom visits, thought I had to go, wanted to go, felt like I had to go....no go. Monday I took it in the morning and by Monday evening I was praying I would go. Very full feeling and lots of pressure but couldn't go until late in the evening and it was a struggle. At this point, I decided to ease back a bit and started doing half a pill on Tuesday morning. I have been doing this ever since (1/2 a pill night and day) until Wednesday. On Wednesday, I took half a pill in the morning and that was it. I think this is where my balance is. I actually am starting to believe that my system just amplifies anything I do. If I eat something that causes gas, I get extreme gas. If I take medicine to slow down the D, I get C....etc. Anyway, so far really great and I am loving the Motofen. One issue is I still have to get my brain out of the routine of having to go all the time......I think this is causing some of the issues I still have. I also still get nervous in traffic, etc. Hopefully this will pass.


----------



## MotofenSteve (Jun 27, 2011)

I GOT IT! Waited 2 years and now I am reunited haha. I got them tonight so I will take it tomorrow and my confidence will slowly come back. Over $100 for them but well worth it. The long wait and battle is over for now. Ahhhh.Dixie yes it is such a disappointment when there are problems getting a medicine that helps you live a normal life. You think it would be so simple.Amanda yeah IDK what they were talking about. Someone just messed up on the order after they were telling me that it was on the truck. So instead of saying sorry we messed up they made an excuse ha.Bert slowly the Motofen will begin to work better for you as you become more and more confident. I think you are so used to being sick that its all in your head that you are going to be sick. You get nervous and we all know when you get nervous you get sick. The Motofen is working and doing its job so you think you will get sick because you are nervous but you can't get sick because the Motofen has stopped that from happening temporarily. Once you start to realize this and see you can do things without being sick you won't get nervous too often and you will trust the medicine. This is what happen to me when I first started taking it. Now I am so confident with it I know when I will be OK and I know I can pretty much do anything just as long as I am not really really sick. I am lactose intolerant also so sometimes I get really sick and D is inevitable. Motofen will give you freedom. I can not say enough about this medication. I drink a lot of water and eat some foods like a bowl of raisin bran with a good amount of fiber in it to ensure that I go in the morning. When I was taking it I was on a good schedule so I hope to return to that. Sometimes you may get C if you don't eat the right foods but I guess that is a small price to pay. And for traffic, which is the worst place to be for people like us, if you start to feel sick or even if you hit traffic and know you might start to feel sick, take a pill or 1/2 of one early. Any situation where I may get nervous or feel like I will get sick I take one. If I start to get sick Ill take one and within 20min I will feel better. Sometimes you take one and then feel sick almost like you have to go. IDK what this is but it goes away. For example- you feel sick, you are in a place where using the bathroom isn't possible at the time so you take a pill or two depending on how sick you feel. After ten min you feel like you may have to go but then slowly it goes away and you are fine for hours. I have mastered the ways of Motofen haha. Good luck.


----------



## AmandaP (Jan 12, 2003)

I think you need to give yourself some time on Motofen. There is no miracle with one pill in one day. You should give yourself at least one week. I only take one pill in the morning. I tried the half a pill in the a.m. and another half in the afternoon but it didnt work for me. But, the one pill in the am before breakfast works fine. I pretty much have a BM every morning like clockwork and its "normal." But, sometimes it has to do with what I have eaten the day before. I love cheese and sometimes it binds me up. I dont care as much for salads so I have to force myself to eat one or an apple. Everyone's system is different - so what works for one may not work for another. As far as "THE URGE" - that really is a mental thing. The longer you use Motofen with success, the urge will fade. But, years of programing still has me in a sweat when I know I'll be in traffic or far far from a restroom. It has gotten much better - thankfully. I have found that if I wear Depends when I know I'll be in traffic or far from a toilet or eating out at a restaurant - it gives me extra confidence. But, for the most part - I'm Depends free now that I can Depend on Motofen. You really have to reprogram your way of thinking. If you have had accidents out in public, like I have had, it takes a long time for you to train your brain to trust this drug.


----------



## XXXBerto55 (May 4, 2010)

AmandaP said:


> I think you need to give yourself some time on Motofen. There is no miracle with one pill in one day. You should give yourself at least one week. I only take one pill in the morning. I tried the half a pill in the a.m. and another half in the afternoon but it didnt work for me. But, the one pill in the am before breakfast works fine. I pretty much have a BM every morning like clockwork and its "normal." But, sometimes it has to do with what I have eaten the day before. I love cheese and sometimes it binds me up. I dont care as much for salads so I have to force myself to eat one or an apple. Everyone's system is different - so what works for one may not work for another. As far as "THE URGE" - that really is a mental thing. The longer you use Motofen with success, the urge will fade. But, years of programing still has me in a sweat when I know I'll be in traffic or far far from a restroom. It has gotten much better - thankfully. I have found that if I wear Depends when I know I'll be in traffic or far from a toilet or eating out at a restaurant - it gives me extra confidence. But, for the most part - I'm Depends free now that I can Depend on Motofen. You really have to reprogram your way of thinking. If you have had accidents out in public, like I have had, it takes a long time for you to train your brain to trust this drug.


I guess maybe the tone was negative, but I like the Motofen a lot. Think it will just take some getting used to and my body getting used to actually holding BM's. 50% of my problem is mental, I know this....if I am home an evening, I won't even think about my stomach and probably won't go. If I have an appointment or something, I will have to go 5 times and it never leaves my mind. I did switch to the one pill in the morning yesterday and today and it seems to be better.  I do think having the urge was partially being constipated too, since I switched to the one in the morning I am not having this so much and I have had a bountiful BM each day. So far so good and getting better each day.


----------



## AmandaP (Jan 12, 2003)

50% of my problem is mental... I think 1/3 of my problem is physical, 1/3 is mental and 1/3 is the food I eat. I can take Motofen or Lotronex for the physical part - but, its pretty much up to me to try and handle the mental. And its all up to me about what I eat. You are right. When I know I'll be home all day - I rarely go to the bathroom or even think about it (unless I'm having a bad time due to food problems). But, I can be home half a day with no probs, get in my car to drive somewhere and within minutes I'm sweating out where is the next toilet. I have to say at least half that fear has gone away the longer I take Motofen.


----------



## MotofenSteve (Jun 27, 2011)

I am exactly the same way. If I am not doing anything all day I have no problem with the bathroom. As soon as something pops up its uh oh I have to get ready and I have to go. Very frustrating. I like how with Motofen I can go out to the movies and walk around a mall somewhere or go out to eat and have no problems at all. To feel free like that is awesome.


----------



## AmandaP (Jan 12, 2003)

A few doctors have told me to take Yoga classes to learn how to control my mind and relax. They started classes here at our library and I'm going to go. When I get an urge attack while out driving or in a traffic jam, I have tried to take deep breaths and count to 10 and it helps a bit. But, as you know - as it get worse, not much you can do, but stop the car and run to a toilet or a bush!


----------



## MotofenSteve (Jun 27, 2011)

AmandaP said:


> A few doctors have told me to take Yoga classes to learn how to control my mind and relax. They started classes here at our library and I'm going to go. When I get an urge attack while out driving or in a traffic jam, I have tried to take deep breaths and count to 10 and it helps a bit. But, as you know - as it get worse, not much you can do, but stop the car and run to a toilet or a bush!


Have you tried taking Motofen before you get into a situation like traffic? Prepare for the worst and you will be OK. Any possible situation I feel I could get sick in I take Motofen even if I am feeling fine. It really helps.


----------



## AmandaP (Jan 12, 2003)

I am trying to get my system regulated with only one Motofen and it seems to be working fine. At this time I dont want to advance to more if I dont have to. I'm afraid of my body getting used to them too fast and them not working at all. But, if its an extreme situation and I was stuck in traffic, of course, I'd pop another one. Usually that doesnt happen (so far) the one a day seems to be doing the job. The answer here is to just stay away from traffic! haha...But, I live in Florida which has a maze of bridge that are always opening and closing to allow boats to pass. I havent been caught yet in that line up - but, I was in one bad traffic jam on the 4th of July!


----------



## MotofenSteve (Jun 27, 2011)

AmandaP said:


> I am trying to get my system regulated with only one Motofen and it seems to be working fine. At this time I dont want to advance to more if I dont have to. I'm afraid of my body getting used to them too fast and them not working at all. But, if its an extreme situation and I was stuck in traffic, of course, I'd pop another one. Usually that doesnt happen (so far) the one a day seems to be doing the job. The answer here is to just stay away from traffic! haha...But, I live in Florida which has a maze of bridge that are always opening and closing to allow boats to pass. I havent been caught yet in that line up - but, I was in one bad traffic jam on the 4th of July!


Yes you do not want to take more then you have to. If you can get by with just one then that is great.


----------



## AmandaP (Jan 12, 2003)

[quote name='MotofenSteve' timestamp='1310500902' post='837225']Yes you do not want to take more then you have to. If you can get by with just one then that is great. When I was taking it before it went off the market, after about 3 months I thought I could probably go with 2 a day to be really safe. My Dr suggested I take a Motofen one day and Lotronex the next and just keep alternating them. But, even with doing that Lotronex is still way too expensive. I think I'll wait until the generic finally makes it to our pharms. And I hear they are also researching a Lotronex for men. So that may work even better for you then the Motofen.


----------



## jmc09 (Oct 5, 2009)

Where did you hear about a Lotronex for men?Thats brilliant news if true.


----------



## AmandaP (Jan 12, 2003)

[quote name='jmc09' timestamp='1310569891' post='837323']Where did you hear about a Lotronex for men? I read about it on the internet (where else?) haha...


----------



## XXXBerto55 (May 4, 2010)

I've done lotronex and I'm a man (last I checked), not so great. Hardened up stools, but constipated me and did nothing for the frequency.


----------



## AmandaP (Jan 12, 2003)

[quote name='XXXBerto55' timestamp='1310591546' post='837356']I've done lotronex and I'm a man (last I checked), not so great. Hardened up stools, but constipated me and did nothing for the frequency. How did you have both frequency and constipation at the same time? It worked fine for me and I never could understand why they say its only for women? I did tend to get constipated, but I worked on that by eating salads and apples. It got rid of the urge to go all the time too.


----------



## jmc09 (Oct 5, 2009)

I read about it on the internet (where else?) haha...[/quote]I asked for that







I'm surprised I havent came across the same article as I usually try to follow up to date developments if I can.Have you got a link by any chance please?


----------



## jmc09 (Oct 5, 2009)

XXXBerto55 said:


> I've done lotronex and I'm a man (last I checked), not so great. Hardened up stools, but constipated me and did nothing for the frequency.


When you said frequency did you mean the urge to go rather than actually being able to go?


----------



## AmandaP (Jan 12, 2003)

jmc09 said:


> When you said frequency did you mean the urge to go rather than actually being able to go?


 I meant "the urge" always feeling like you have to go whether you have to go or not. That feeling of panic if not close to a toilet. Yes, I have run into a bathroom with "the urge" and - nothing. It was like I just needed reassurance that a toilet was there if I needed it. As far as a link to Lotronex for men - just put it in your web search and you will come up with a bunch of different things they have to say about it.


----------



## XXXBerto55 (May 4, 2010)

[/quote] How did you have both frequency and constipation at the same time? It worked fine for me and I never could understand why they say its only for women? I did tend to get constipated, but I worked on that by eating salads and apples. It got rid of the urge to go all the time too.[/quote]I still had to go the same amount of times a day as when I wasn't taking it, but when I would go it would be just a very little bit. It was hard to go and would produce what I referred to as rabbit turds. I have a somewhat similar problem right now with the motofen although it is less than the lotronex was and has been improving.


----------



## AmandaP (Jan 12, 2003)

I still had to go the same amount of times a day as when I wasn't taking it, but when I would go it would be just a very little bit. It was hard to go and would produce what I referred to as rabbit turds. I have a somewhat similar problem right now with the motofen although it is less than the lotronex was and has been improving. Try cutting back on the amount of Motofen you are taking. And eat an apple or a salad a day. Also, I have found that drinking a good amount of water a day will flush your system. Water is always a good thing.


----------

