# The Forbidden Cure



## chemist (Mar 16, 2009)

Dear fellow forumers,According to the latest paper from The American College of Gastroenterology (January 2009 issue of The American Journal of Gastroenterology), "5HT 3 antagonists [Lotronex being the prime example] are efficacious in IBS patients with diarrhea and the quality of evidence is good."We constantly hear that this medication is a life changer for those lucky enough to get their hands on it (http://www.irritable-bowel-syndrome.ws/lotronex.htm).We can ascertain that there is a quite huge potential market for what seems to be a gold standard product. We know that it can lead to ischemic colitis - but that's only in IBS-C sufferers. _Of course it would_. It's not meant for them.Given the above, I find myself at an utter furious loss as to why Lotronex is so wildly protected from those who need it the most: IBS-D sufferers.Does anybody know why there is not more research being done on this and if there is any way of procuring the drug without being a woman (I'm a man) in the US (I'm in the UK) with a doctor who has signed up for the FDA programme (which mine obviously cannot do).Is there anything we can do to get this back on the agenda?!


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## Kathleen M. (Nov 16, 1999)

I wish I had a good answer for you.Unfortunately there is a lot of resistance among regulators. For some reason IBS is not seen the same way acne or erectile dysfunction are.Those diseases/disorders are so life threatening that it is totally acceptable for medications to leave you maimed or dead if there a a chance the medication will make a difference for you.IBSers are thought to just be people that refuse to eat their fiber so any treatment more dangerous than fiber cannot be allowed on the market.It doesn't seem to matter how much research there is that IBS can be a devastating illness, not just a minor inconvenience and how much evidence there is that IBSers feel that the same amount of risk allowed to treat every other disease on the planet would be a risk we are willing to take to go to the store without pooping our pants there doesn't seem to be a lot of pressure on regulators to change their views.The only reason Lotronex even got back on the market in a strictly regulated fashion was because something like 1% of all users wrote to the FDA to complain. We thought maybe that would get their attention, but based on how they treat other IBS drugs they seem to be completely back to eat more fiber and leave us alone mode.Really makes one want to pray all of the people in charge of regulating drugs get severe IBS, even though that isn't very nice.The main problem I see is drugs that are more effective and safer are unlikely to be developed because everyone knows the FDA and other regulatory bodies will not allow the drugs to be approved. Fiber and only fiber is what we are allowed and should be all we ever need.*sigh*


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## chemist (Mar 16, 2009)

Thanks Kathleen. The time you put in to helping people on this forum is phenomenal.Is there nothing we can do about this?Surely the pharma company (in this case GSK I believe) would back a renewed attempt to release the drug as there would be huge, global demand for their product.If we add that to the potential power of a community like this, maybe the regulators would be more inclined to examine the issue again... It seems ridiculous that a few incompetant doctors (those who prescribed the drug to C sufferers initially) should cause such suffering for so many people.


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## Nath (Jan 5, 1999)

The good news is your doctor does not have to be part of the prescribing program if you are outside the US. The bad news is you have to pay full price from an online pharmacy and lotronex is fairly expensive.


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## IBSD88 (Mar 23, 2009)

do you know a site where you can buy it and just how expensive it is, if I can afford something to sort me out id willingly pay anything up to the amount I can actually pay.


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## chemist (Mar 16, 2009)

If that's the case, as per IBSD88's post below, do you know a safe place to buy the stuff online? 5HT3 Antagonists seem to be the way forward. I've been testing Zofran (Ondansetron) which seems to work on some level. But Lotronex seems to be by far the most powerful, which is why I'd pay a lot to get the stuff...


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## Kathleen M. (Nov 16, 1999)

Unfortunately the cheaper the med is at an online pharmacy the more likely you are not to get the real stuff.Pharmacies that are cheap, usually from a poor country, do not require any prescription, etc. also tend to be the ones that aren't likely to pay top dollar to get the real stuff.I'm not sure if many places sell it online because of the restrictions in prescribing.If they will send it to you without a prescription that has the sticker on it saying your doctor understands how to prescribe it I would be worried. Also use some net tools to find out where the pharmacy actually is located rather than what country they say they are from. A lot of them claim to be in Canada because people trust Canadian pharmacies even if they are on another continent.Drugstore.com has it (I think they are a real pharmacy) and list the prices so you can get an idea of what it really runs. They may not be the cheapest, but they do seem to be real.


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## overitnow (Nov 25, 2001)

Over $500 a month!


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## chemist (Mar 16, 2009)

Ouch! That's more than I thought. Can't actually find the meds on drugstore.com though...If I was sure the meds were genuine I would pay that though as I wouldnt take one every day. Has anyone else bought from that site and if so, how was it?


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## overitnow (Nov 25, 2001)

http://www.drugstore.com/pharmacy/prices/d...&trx=1Z5006That should get you to the product/pricing page.I had read here about that cost before. I have to say that I would have had to try _everything_ before I would even consider putting out that much, especially as you don't know if they will work, or not. I know people have complained when they find out that the supplement I use costs almost $40 a month, that the hypno is $100, even though that is a one time cost, or that even Caltrate costs too much. Somedays those discussions make me despair. I would never want to go back to "dealing" with this problem, now that I have been free of it for so long; but I think $500 would test my resolve. I feel myself very fortunate to have found something to stop my problem. I wish you well with your hunt.Mark


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## chemist (Mar 16, 2009)

Mark,I have read your story - fantastic for you and also quite amazing that you're still on here helping people out. Unfortunately for me, my IBS is based upon irrational and ingrained subconscious anxieties, meaning that I get D when I _do_ stuff rather than because of health / diet.So far, the following treatments have not lived up to expectations (for me):Hypnosis x 2Extensive CBT or meds wise, as yet untamed by:*Imodium *(doesn't work well enough anymore although decent sometimes)*Propranolol *(big hopes for this due to its proven affect on adrenalin but doesnt help IBS. Damn.)*Mebeverine *(not helpful, as it constipates generally and doesn't help with 'attacks' of D) *Valium *(not the answer if you want to be lucid - and when would one not want to be lucid?)*Peppermint Tea* (as per mebeverine and also tastes bloody awful)*Calcium *as per Linda's famous post (back on it today actually, but again think this is not going to be powerful enough for attacks of D, rather clog me up generally which is literally a pain in the ar*e)*Escitalopram *(ah, for two weeks I thought I was cured. The extra serotonin seemed to do the trick. Alas, this wore off and once I had another attack I lost confidence. Also not keen on the idea of taking meds every day)*Zofran *(interesting one this - I am becoming more convinced that serotonin imbalance is the problem an this is the only 5HT3 antagonist that I can get hold of. That's why I started this thread - Lotronex seems to be the daddy here).Right, never done that before. Quite cathartic. I hadn't realised until now how many avenues I have explored. I just turned 30 - which means I've had this thing for about 8 or 9 years. But I refuse to give up, I'm now considering Xanax on a need-to-take rather than ongoing basis. Have done plenty of research on it and am fully aware of it's potential damage through misuse but am also aware that I have only one life and will certainly not waste it settling for this.Come on science!


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## dcuk (Apr 29, 2009)

I find myself in the strange position of living in a country (Thailand) where I can buy my regular medicines over the counter without needing a prescription. The convenience of this is huge. I have been asked by a number of friends and family back home (UK) if I can obtain various meds for them - sometimes I can, sometimes I can´t. I understand that certain meds are very difficult to get - I could certainly ask the place where I buy my meds (Propranolol and Lansoprazole junkie) if they have something you need. It´s a reputable pharmacy chain located inside a big department store - kosher government licensed with a degree-qualified pharmacist. PM me and I will see if they have what you want. Don´t worry about fake meds - over here, faking medicine attracts an epically long jail sentence - and in a Thai jail, that´s a very strong deterrent!Sorry if this seems like spam - it is a little bit spammish, but I am a real person and might be able to help somebody.


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## IBSD88 (Mar 23, 2009)

found a website that has them, not cheap at all with the weak pound going to be £300 a month but for other people looking this is a direct link to the site.http://www.northdrugstore.com/buy-Lotronex.html however it still needs a prescription, couldnt find any on that other website.


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## Borrellifan (May 5, 2009)

chemist said:


> Dear fellow forumers,According to the latest paper from The American College of Gastroenterology (January 2009 issue of The American Journal of Gastroenterology), "5HT 3 antagonists [Lotronex being the prime example] are efficacious in IBS patients with diarrhea and the quality of evidence is good."We constantly hear that this medication is a life changer for those lucky enough to get their hands on it (http://www.irritable-bowel-syndrome.ws/lotronex.htm).We can ascertain that there is a quite huge potential market for what seems to be a gold standard product. We know that it can lead to ischemic colitis - but that's only in IBS-C sufferers. _Of course it would_. It's not meant for them.Given the above, I find myself at an utter furious loss as to why Lotronex is so wildly protected from those who need it the most: IBS-D sufferers.Does anybody know why there is not more research being done on this and if there is any way of procuring the drug without being a woman (I'm a man) in the US (I'm in the UK) with a doctor who has signed up for the FDA programme (which mine obviously cannot do).Is there anything we can do to get this back on the agenda?!


Thank you for posting this.I had posted something similar on the .. diet boards but met a good amount of resistance from people. It seems everyone over there thinks that soluble fiber is the cure of all cures.I'm also a male who suffers strictly from D and it is disabling to say the least. I have undergone every test there is and every doctor tells me the same, "no abnormalty's that we can find, its IBS".I have also tried just about everything possible to cure it;Antispasmodics - Didn't help much and made throat super dry to the point i can't talk.Anitbiotics (metronidazol and siprofalaxin) - Helped greatly the first time but the next few times the affects were lessened.Soluble fiber diet - Helped a bit but no-cure still plenty of symptoms and always hungry.IBS 100 Audio program - Didn't help.14 Day fast/cleanse - Didn't help, still symtpoms.Imodium - helps the most out of anything but still plenty of symptomsProbiotics - tried everyone under the sun and nothing helped.Peppermint tea/capsules - helps but no-cure, still symptoms.Marijuana - This and imodium are the best relievers, but still symptoms and bad side effects.Accupuncture - Didn't work.Aloe vera juice - drank the purified kind for two months, didn't work!This has lead me to the conclusion that there is something malfunctioning in my body that no diet or probiotic can cure. I wish this weren't the case and i could come on here telling everyone i found the magic cure but that is simply not the case.My last resort is to try Lotronex, i saw a new GI doc at Yale last week and he said he would most likely prescribe it for me after my test results come back (even more blood work). If not im going to pony up the dough and buy it on-line to see if it helps. I will most definitly be reporting back within a couple months to let you know whats going on.Thanks.


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## alymcclain (Apr 16, 2009)

I'm new to this forum, but I wanted to comment. I am 28 years old and have been taking Lotranex for almost ayear now. It has done wonders for me. I was given the possible side effects, but was willing to take the risk if it would help! I have a great Doctor with the Medical University of South Carolina. After being tested for everything under the sun, I was referred to him. He immediately said this is what is worng (IBS-D) and this will help. He also put me on Digestive Enzymes that help with the bloating. The Lotranex has not given me any probelms. Ihave state insurance so it is covered under it. Therefore it isn't too expensive. You do have to have a certain sticker on the Rx. If this sticker is not on the RX, they will not fill it. That little pill has changed my life!


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## Borrellifan (May 5, 2009)

alymcclain said:


> I'm new to this forum, but I wanted to comment. I am 28 years old and have been taking Lotranex for almost ayear now. It has done wonders for me. I was given the possible side effects, but was willing to take the risk if it would help! I have a great Doctor with the Medical University of South Carolina. After being tested for everything under the sun, I was referred to him. He immediately said this is what is worng (IBS-D) and this will help. He also put me on Digestive Enzymes that help with the bloating. The Lotranex has not given me any probelms. Ihave state insurance so it is covered under it. Therefore it isn't too expensive. You do have to have a certain sticker on the Rx. If this sticker is not on the RX, they will not fill it. That little pill has changed my life!


Very glad to hear it has worked for you. Are you male or female?


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## alymcclain (Apr 16, 2009)

I am a female


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## rockingirl (Jan 10, 2008)

alymcclain said:


> I'm new to this forum, but I wanted to comment. I am 28 years old and have been taking Lotranex for almost ayear now. It has done wonders for me. I was given the possible side effects, but was willing to take the risk if it would help! I have a great Doctor with the Medical University of South Carolina. After being tested for everything under the sun, I was referred to him. He immediately said this is what is worng (IBS-D) and this will help. He also put me on Digestive Enzymes that help with the bloating. The Lotranex has not given me any probelms. Ihave state insurance so it is covered under it. Therefore it isn't too expensive. You do have to have a certain sticker on the Rx. If this sticker is not on the RX, they will not fill it. That little pill has changed my life!


Does it go under the nonpreferred brand name or preferred in your health insurance? And how much does it say the list price is when you get it? Just curious, as this is my next step to take with my doctor, and I'm not sure what kind of battle I will be having with my insurance.


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## jkc1 (May 10, 2009)

in the description from drugstore.com it says its only for woman?


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## chemist (Mar 16, 2009)

@dcukThanks for the offer, sounds interesting. Let us know if they have [email protected] do let us know if you buy it onlineI'm now trying the TCA (tricyclic antidepressant) Amitryptoline.It's officially recommended by the NHS (NICE) in the UK for IBS-D at low dosages (10mg daily).I've been on it for a couple of weeks now but nothing's happened (yet - it's meant to take a while).Will let you know how it goes...


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## IBSD88 (Mar 23, 2009)

it does say it is only for women (as it was designed for them) but aparently it is now permissible for men to try it.I just wish it was available in the uk.


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## chemist (Mar 16, 2009)

3rd week of the TCA Amitryptoline - just went up from 10mg/day to 50. I have a very sympathetic doctor.Now noticing effects.Dry mouth / foggy brain on day 1 of the new dose.Replaced today with lucidity and mild feelings of euphoria.IBS symptoms very good - although would put this down to the 2 immodium taken 2 days ago.Will see real efficacy next week and keep all informed.


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## Borrellifan (May 5, 2009)

Chemist - have you tried taking any fiber supplements? did they help at all? It seems that all they do is bulk up my bowel movements somewhat but don't really have much effect on how many movements or pains/spasms my stomach has. Im currently trying Marks Provex CV supplement and am on day 2. I haven't noticed any change but im going to give it atleast a month before i say screw it and try the Lotronex.


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## chemist (Mar 16, 2009)

Borrellifan: Yeah Ive tried bulking agents but they are just annoying really. Don't solve the problem at all. Just make it harder to go when you genuinely want/need to.I've been on Amitriptyline 50mg for a little while. Thought they were helping but had a bad episode the other day and have lost confidence in them a bit. Might up the dose.The whole bloody thing has shredded me really. Can't enjoy much at all anymore. Promised myself I would come on here just to moan as it's not productive but feeling quite depressed this evening. Oh well, onwards and all that... Keep us updated with your progress...


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## chino (May 22, 2009)

dcuk, do they have Lomotil in Thailand, I am in great need of this medication for my wife, Will your pharmacy sell online and ship internationally.Thankschino


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## IBSD88 (Mar 23, 2009)

im still trying to find an international shipper for this stuff (without prescription of course), but again cost is a factor to check too, no luck though so if anyone else finds one send me the link please


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## Borrellifan (May 5, 2009)

IBSD88 said:


> im still trying to find an international shipper for this stuff (without prescription of course), but again cost is a factor to check too, no luck though so if anyone else finds one send me the link please


I had thought one of the links in this post would work without prescription (for U.S. of course) but i was wrong. Upon check out it promps you for a prescription. Im hoping the Dr. at Yale who i recently saw is going to write me a script for it, he seemed pretty reasonable about it compared to my local G.I. who flat out denied me because im not a women. I'll let you know how it plays out within the next few weeks. If anyone finds a site that sells to the U.S. without prescription please let me know.


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## Liz1234 (May 15, 2009)

Kathleen M. said:


> Unfortunately there is a lot of resistance among regulators. For some reason IBS is not seen the same way acne or erectile dysfunction are.Those diseases/disorders are so life threatening that it is totally acceptable for medications to leave you maimed or dead if there a a chance the medication will make a difference for you.


Please, I understand the frustration, but as an IBS suffer who is quite scarred by acne, I can tell you that disfiguring acne did more to keep me home and un-social in my early twenties than IBS (an admittedly mild case) ever did. Let's be gentle when we compare our problems to others' problems. Our issue is the system; we're not in competition for the most debilitating problem--even if we are in competition for research funding.Thanks.


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## overitnow (Nov 25, 2001)

Borrellifan said:


> I had thought one of the links in this post would work without prescription (for U.S. of course) but i was wrong.


It seems to me someone had suggested finding a doctor who will prescribe it by working back from the pharmacists. If you are in a large enough centre, you can probably find someone to write the script in that manner.I presume, given the cost of it, that you have insurance that will cover it. It is frighteningly expensive.Hopefully you will see some help from the Provex and not have to track it down; but if not, good luck with this.Mark


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## Borrellifan (May 5, 2009)

overitnow said:


> It seems to me someone had suggested finding a doctor who will prescribe it by working back from the pharmacists. If you are in a large enough centre, you can probably find someone to write the script in that manner.I presume, given the cost of it, that you have insurance that will cover it. It is frighteningly expensive.*Hopefully you will see some help from the Provex and not have to track it down*; but if not, good luck with this.Mark


I hope the Provex will work too Mark. I havent noticed any changes yet after a week of taking it. I haven't been taking any immodium or antispasmodics as to make sure that if i feel a change that its the Provex. I'm still trucking along though.As far as insurance goes, i have none at the moment (possibly getting some soon) and would most likely have to foot the bill myself. Which is fine if it makes me feel that drastically better. I would only order the minimum at first to see wheather it works or not. I would almost pay any amount to feel better. Its not that i can't find a doc that prescribes it, i just seem to be running into resistance from docs because im a male. They don't want to be sued, etc.


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