After the recall of Zelnorm, which now extends to Canada and Australia as well as the United States, there are a lot of IBS-constipation sufferers who have been left in the lurch. I've had a number of really quite distressing messages from sufferers who don't know what to do without Zelnorm, and so I thought I should write a post about what possible alternatives to Zelnorm there are, and what people have been telling me they are using already.
Long-term sufferers may have tried a lot of these before, but I hope I can offer at least one new suggestion. This post comes with the usual warning message that I am not medically qualified in any way, and you should check with your doctor before trying any of these treatments.
Some of the medications may not be available in Australia and Canada (all are available in the USA), so ask your doctor about your options.
Amitiza is a fairly new medication which was designed for chronic constipation rather than IBS, but is being used by a number of IBS sufferers. There does seem to be a side effect of nausea in some people, although that might be lessened if it is taken with a meal. Reviews of Amitiza so far have been mixed, but that will usually be the case with most drugs as individuals and symptoms can vary so widely. Some people have found it helpful.
Miralax is an osmotic laxative ("osmotic" just means it draws water into the bowel) which used to be prescription-only in the USA but is now over-the-counter. Miralax does seem to be a fairly powerful laxative and there are some positive reviews on my IBS treatment website.
Magnesium supplements are available from most healthfood stores and are used by quite a number of IBS-C sufferers with good results. Magnesium oxide and magnesium citrate seem to be the forms of magnesium with the best results (I take magnesium citrate myself), and the dose is usually around 400mg a day to start off with, perhaps one tablet in the morning and one or two at night, and then alter the dose as needed.
Milk of magnesia is a fairly mild laxative, but one that does seem to be gentle on the stomach and not cause pain. Not to be confused with plain magnesium tablets.
The IBS Audio Program 100 is famous in the online IBS community for being effective and safe, and I've read many messages from people who have used this program with good results. It's a simple self-hypnosis program (hypnotherapy has at least a dozen clinical trials to show it works for IBS) which you listen to at home. It comes on CD, and can be delivered worldwide.
A gluten-free or a dairy-free diet (or both combined) do seem to help a number of sufferers. It's probably fine to test this on yourself for a few weeks or so by cutting out all dairy and gluten and seeing what happens, but if you are going to do this for a longer period of time then I would ask a doctor or qualified nutritionist/dietician for advice on how to replace the foods you have excluded.
And if anyone does try any of these treatments, or has any other Zelnorm/Zelmac alternatives which they are using, please do post your views in the comments section to help fellow IBS sufferers.
Sophie, a while back I mentioned to you in an e-mail, but not posted to your site, about the fact that I had tried Zelnorm several years ago. I tried it for about two weeks and didn't like the affect it had. Over six months ago I tried a supplement called L-Arginine because of an article you had posted that led me to another article and so forth until I got to the fact that L-Arginine is a precursor to another substance our bodies produce but that according to researchers is greatly diminished in IBS-C patients. The L-Arginine felt exactly the same to me as the Zelnorm. According to a wise old woman at a local health food store it's a great supplement and one we should all be taking. Even at half the recommended dose (I tried 250mg) I got unnatural contractions but for those who feel good on the Zelnorm???
As you know, I don't believe there is a magic bullet and as much as it's been said here, diet and patience is key. I've been on the Eat Right for Your Blood Type Diet and it's brought me to the point of remission for the IBS, which is sort of miraculous but it's taken about a year of slow improvement. But it didn't do much for the constant low level fatigue. Either did the melatonin, gaba, taurine, inostitol, acai, iron supplements I've tried for it. About two weeks I started taking DHEA and that has made quite a nice difference. DHEA is not something to play around with but I do my research, take a small dose and throw caution to the wind. The research indicated that people with chronic fatigue often have low levels of DHEA. I should have been tested but I charged ahead, that's my MO. Maybe the diet would have eventually corrected that too, I don't know. Also, the diet hasn't done much for the interstitial cystitis (IC) and it should in theory?! I'm working on it. The IC is relatively new - 7 years. It seems I'm on more of a 30 year plan.
Gook luck all. Sharon
Sophie, it was acetyl L carnitine that I had tried - NOT L-Arginine. The L-Arginine is supposedly a precursor to nitrous oxide which supposedly is lacking in people with IC. If I can't keep my supplements straight I shouldn't post. At any rate, I did mention the Acetyl L-Carnitine on your website on October 16, 2006 when I first tried it.
I'm locking up my keyboard. Sharon
Yes me again. BINGO!!! If you google Zelnorm and acetylcholine you should find articles on the fact that it is believed that Zelnorm works by increasing the amount of acetylcholine in the gut and supposedly the natural way to increase acetylcholine is with the precursor, Acetyl L-Carnitine. Oy, so complicated! Sharon
gluten and diary free diet does ease IBS symptoms this combined with a Liver conscious diet see Dr Carbot web site. After years of answered Q's re IBS from the medical world finally a GP that puts IBS suffering down to lack of fibre (suited to the individual) and water. 4 years of vast expenditure with natropaths and ongoing IBS, were made a farce of 4 days following the liver diet and no more constipation no more bloating and no more IBS, diet is straight forward, it has freed me and given me back my life, my husband is so impressed he is a liver diet convert, we will use the diet principles for life, best $30 ever spent buyting the book. The healthy liver and bowel book answers all the questions needed for IBS suffers. Good luck hope you have as much success out of the diet as I did,would love to here your feedback. Susan M
I just want the zelnorm back! It changed my life for the last 13 months. Now .. I am just lost. I have tried the amitiza and the nausea is unbelievible! I want zelmorn back!
I'm in agreement with Trisha. I just want Zelnorm back. I tried changing my diet, taking supplements, etc, etc, etc. Nothing helped until Zelnorm. I was on it for a few years and my life was finally back to normal. Now, it's constant pain, bloating, etc, etc.... Amitiza makes me dizzy and gives me a headache, but does nothing for my IBS.
I think they need to get a better study to back pulling Zelnorm from the market. IE...what is the medical history, life-style, eating habits, etc for these subjects. Only 0.1% had an increase in heart related activity. I am young, active, try to eat healthy and see my doctor at least once a year. All tests show I am in great shape, but yet we ALL have to suffer from this voluntary recall. I think it SUCKS!
I agree I want ZELNORM BACK. After the doctors (meaning 6 including Vanderbilt Medical Center)did every diet, test and trying every medication known. I got no relief until Zelnorm. It was the last resort for me. Last month my doctor did lab and heart tests and found nothing wrong. The benefits of Zelnorm certainly outweigh the risks for me. I can not function with the severe pain. However, I have contacted the FDA and Norvatis (the manufacturer) and they both confirmed that they are working to get Zelnorm back in an IND program. I'm not sure what that is but the FDA emailed me a questionaire for the doctor to fill out requesting an emergency IND for me. My doctor is now working on that. The FDA did not stop the manufacturing of the drug it only stopped the wide distribution so I encourage anyone that Zelnorm was a "last resort" to contact the FDA and their doctor.
I want Zelnorm back, too. I have had IBS all of my adult life. I never understood why I felt awful all the time. I thought my constipation was due to my menstrual cycle until I had a hysterectomy, which didn't affect my constipation at all. Zelnorm was a wonder drug for me. I have tried Amitiza for the last month, with no results. I used the Puranol system, with no results. I have increased fruits, vegetables, whole fiber and water intake, with no results. My sister mentioned to me that she has Zelnorm in her medicine cabinet that she couldn't use. I now have relief for a few weeks. I will contact the FDA and Novartis. Maybe if enough of us contact these people, Zelnorm may be available.
I have tried EVERYTHING literally. I've had IBS since a very young age. Now w/ Zelnorm gone I'm lost... My bloating is ridiculous. I'm a skinny person (about 105 lbs.) and my belly is the size of a pregnant woman when she starts to show... :( I don't experience much pain, but I do get headaches and a feeling of being "dirty inside", like permanently intoxicated. I also WANT ZELNORM BACK!!! If someone has tried something that did have results, PLEASE POST IT!
Thankyou for thye suggestions. I am definitely one of the "lost" souls without Zelmac. For many years I have relied on a range of treatments, most of which have failed. Very difficult to take but very effective is large doses of Epsom salts inb hot water although I do question the loss of nutrients and the resulting dehydration etc but it does work. I look forward to giving some of your alternatives a go.
I also want Zelnorm back. I tried Amitiza and it just leaves me with heartburn and miserable. I have taken myself off of it. I have also tried diets, watching what I ate, etc and have found nothing that helps like Zelnorm. I was on Zelnorm for about 3 years and have had no side effects. What can we do to get it back???? Miserable in Mississippi without Zelnorm!
I want Zelnorm back. I have been nothing but miserable, tired and sickly since it has been taken off the market. I have had my large intestine removed and was to be on Zelnorm for the remainder of my life. I was fine with that, at least I had some quality of life. I understand the risks of the drug and am willing to accept them to have some quality of life.
I to am hoping that some how they will put Zelnorm back on the market.
It is the only medication that worked for me. One tablet in the morning with breakfast gave immediate results. I had never felt so good in years.
I would pay $ 10.00 a pill if I could buy them from a drug pusher on a dark street corner
Hey guys :-) I was born with IBS and i'm now 25 years old! I understand the despair and the desperation you all are feeling! What people tend to not think, is the fact that this illness also drags us down mentally, as well as physically!
BRING ZELNORM BACK!!!!!!!!
Since it has been off the market I have been in emergency, I cant find anything else on the market that does what Zelnorm does. I understand that it may have bad side effects so it was taken off the market, but look at the dammage it has done to people since going off the market!
I could cry when i read the comments about zelnorm. I totally agree with everyones sentiments. Zelnorm gave me a life. I have spent a fortune and been miserable since it went off the market. Amitiza makes me so nauseous that I can only take it with a full meal therefore I miss doses and after all that it is only marginally effective. My Dr. says because Im asthmatic I am disqualified from the limited use allowed. Fiber and diet doesnt help me I just get MORE bloated and miserable. My husband wonders where the active fun person went. Its true that this disease affects the emotions and mental issues I havent felt healthy since the Zelnorm was pulled.
I want Zelnorm back too. I was born with IBS and without Zelnorm I am absolutely miserable Amatiza does nothing but make me sick and the heart burn and nausea is unbarable.
Hi, I am 25 years of age. I have been living with IBS for as long as i can remember and didn't know what it was up util a few years ago. The way IBS makes you feel is terrible. I I've been to the doctor and gotten the perscription for zelnorm but never had it filled. Is Zelnorm still off the market.
Hi Kim - I am afraid that Zelnorm is still unavailable, and Novartis have even withdrawn the IND (investigational new drug) program which had allowed access to Zelnorm for some patients. The only access now is through an emergency IND which may still be available, but that requires your symptoms to be proven as life-threatening.
I too suffer from IBS and it does take "living" a normal day impossible. There is a pharmacy in India that sells the generic form of Zelnorm called Tegaserod, which actually works better in my opinion. Typically within two hours like clock work. My gastro doc says that the benefits of the drug greatly outweigh the risks! The website is alldaychemist.com and by the way the cost is way less then in the US, $2.25 for 10 pills, shipping is high so if your going to buy, buy big.
Thanks so much for all the info...my girlfriend has ben hospitalized with a tube down her throat and everything and they perscribed amatiza but it was too expensive but ive been looking for some alternatives because she is having the same symptoms she was having when they admitted her so i really apprciate all of your info and all the postings.
I too, am mourning the loss of Zelnorm. I managed to get a Dr friend to bring back a few boxes of Zelmac for me on an international trip, but it didn't have the same effect. Is there a difference between Zelmac and Zelnorm?
Zelnorm and Zelmac should technically be the same drug. However, I know there are generic versions out there which should, again, technically be the exact same thing but you never quite know. I have heard reports of people something claiming to be Zelnorm/Zelmac and then having no or different effects from it. The trouble is you don't know how well regulated other countries are when it comes to drugs - and there certainly are some fake drugs out there.
It's sad but reassuring reading all of the posts here, knowing there are people world wide who feel exactly like me. I don't have IBS but have had chronic constipation my entire life. I had my large bowel removed 15 years ago in the hope that this would offer relief. It did not! I was given prepulsid (cisapride) which worked a treat if I had 100mg/day instead of the suggested 30mg. This was approved by my specialist. It made a huge difference to my life for nearly 10 years. Unfortunately this was withdrawn from sale for the same reasons Zelnorm has been withdrawn. I battled for some time before finding Zelnorm which I took in conjunction with Motilium 3 times daily. Once again a happier me! I was devastated when this too was withdrawn. I have resorted to Epsom salts which are hard work nevertheless VERY effective in cleaning the entire system. I use it 3 times a week. Like Katy, I too have had Zelnorm sent from India and yep it works. I ordered small initially in case the product never got sent but it did. I agree that it is best to order big to save on shipping...just keep your fingers crossed and hope it turns up.It was checked by customs which meant it took longer to get here too, so don't order at the last minute. Hopefully Zelnorm will again become available. We are catering to the minority by withdrawing it. If we understand the risk and are still prepared to have it and there is no substitute, then we should be able to have it. Hope this helps :)
I too miss Zelnorm. It worked like a miracle for me. I didn't even realize how bad my symptoms were until I tried Zelnorm and became just about symptom free. I hope it becomes available again.
You're not alone. I've had chronic constipation since I can remember (about 4 years old) and was finally diagnosed with IBS a few years ago. Mind you I have tried every laxative, diet (fad or otherwise), don't eat dairy, no gluten, you name it, I've done it (and bought the t-shirt). My doctor prescribed me Zelnorm after a long bout with other rx's and Zelnorm literally saved my life...I was able to have a bm once a day (instead of 2-4 days), wear size 6 jeans (I am pushing a 10 now because my abdomen is always so bloated), and my skin even cleared up (I never had a problem with acne until my mid-20s when I noticed my IBS symptoms got worse). I have tried EVERYTHING I can think of, everything I can research, nothing at all works even a little. The bloating is annoying, but the constant pain is what really irks me about all of this. Thanks for the tip on ordering. I would be willing to downsize my way of life if it meant I could take Zelnorm or something like it and have my body feel 'normal' again.
Hello, I can just cry reading all of these posts. I never even got to try Zelnorm because I was trying to concieve since 2005 and finally became pregnant and had my baby in Oct. 2007. It is unbelievable that all my symptoms dissapeared and I had regular bowel habits while I was pregnant and for about 6 months post-partum. Now here I am again in the same boat! Miserable! Right now I am continuing my prenatal vitamins (I still nurse twice a day) and I just started magnesium supplements 250mg, and a probiotic with prebiotic supplements. I am working on increasing water intake and getting more active. I am small as well, 107lbs. But I look about 4 months pregnant. I can't take it anymore! I feel like toxins are building inside of me, especially when I don't go for about 7 days. I had a colonoscopy which showed nothing. I can't stand going to doctors anymore, (especially male doctors) they do nothing to help and just keep pushing the whole fiber, water, sennakot routine..blahh, blahh, blahh. I think they just think it's all in my head. I am at a loss. Any suggestions would be great. Please tell me about the epsom salts, how do you use it? Thanks...
Sharon M
I really miss Zelnorm. When my Doctor first suggested it I turned it down because my insurance considered it "non-formulary". I decided it was worth a try and it sure made a difference. Fiber seems to make me worse. I'm on Amintiza and super dieter's tea. Sometimes it works and sometimes it doesn't. Has anyone else tried the IBS audio program 100? I'm thinking of giving it a try.
Hi Sharon
I'm with u and could cry too...but knowing that so many other people suffer too somehow makes it easier. If you are nursing then you would need to check with a doctor. i have used Epsom salts for 15 years now. They DO work...but are hard work. I have the added bonus of having had my large bowel removed...long story but do NOT have a "bag" but still struggle! Epsom salts are very cheap. They are crystals which when mixed with warm water dissolve and after drinking begin to clean out the bowel!@!! The time they take to work varies. I have 6 teaspoons in about a cup of boiling water at 4.30am 3 days a week...on an empty stomach obviously at that time of day! Within an hour the bowel begins to empty. This happens quite regularly for up to 3 hours by which time I am ready to leave for work and no longer need to have a loo close by! Ideally Zelnorm are a better option for me mand work VERY quickly. I have started to buy them on the net from MEDSTORE and they are a reasonable price considering. I feel a million dollars when I am able to get them just knowing that I don't have to get up at 4.30. Good luck :)
I have tried some of these Alternatives for Zelnorm and have a question about taking the Magnesium Citrate (author of article said she takes the Citrate). It mentions 400 mg. a day but I assume that is for the Magnesium Oxide. What is the doseage amount for the Magnesium Citrate? Also the Magneium Citrate says on the bottle to discard after 24 hours and I am wondering if the bottle could be put in the refreg. and still be usable after a few days use?.......
Hi Jane - it's important to distinguish between magnesium citrate supplements, in tablet form, and magnesium citrate liquid. The liquid is, I believe, a pretty strong laxative.
I take 400mg of magnesium citrate tablets per day, but I've never used the liquid stuff. I would check with a pharmacist or doc for the correct dosage if it doesn't indicate it on the bottle.
I Want to have back zelnorm also, I started a new wonderful life and than Novartis called it back under pression of Swissmedic and FDA. Amitizia helps but not so good as Zelnorm, I often feel sick with Amitizia. Also Duspatalin helps me.
Well, I too, like most of you are very disturbed about the removal of Zelnorm by the FDA and CFIA. This drug completely changed the way I felt and provided me with a great quality of life again. I have a few Zelnorm left and use them only when I am desperate. I am wondering if someone can tell me if they have managed to order Zelnorm on-line into Canada? I would hate to put out the money, only to find that the Canadian Customs confiscate my life-saving drugs. Also, can someone tell me if the pricing from MEDSTORE is in Euros? I was having trouble identifying the currancy.
Thanks so much
I miss Zelnorm SOO much!! I too had some Zelnorm left over that I took when I was desperate....now they're gone and I get to suffer. I have tried just about everything out there.. I've even taken a laxative overdose that takes 3 days to work! I need Zelnorm to come back on the market.
I agree that it shouldn't be given to people with specific medical conditions or histories but why should the rest of us have to suffer? Zelnorm was my lifesaver:(
Hi Kim from Canada...I have just ordered another lot of Zelnorm from Medstore. Cost is $108 includes packaging and handling. Once you have had one order you receive bonus pills. They ARE checked by customs as the last lot I gotr had the customs stamp but they let them in as they are no doubt aware that they are a medical drug.
Hi Dianne, I have tried so many things that just do not work. Zelnorm was a miracle drug for me - once my body got used to working (it was a shock as it never worked normally before) I was able to take half the dosage and still no bloat or pain, just normal bowel movements. I have also had headaches as long as I can remember related to the low motility issue. For the year or so I took Zelnorm I felt "this is what normal people must feel like every day - WOW!" Now I feel miserable most of the time. Where did you order Zelnorm? When I tried to order through Canada the sites state that they no longer have access to the drug. Any ideas would be appreciated.
amitiza is a living hell. it makes me sick hours a day but i have to take it zelnorm was great wish they bought it back
I thought I was the only one who had this problem!! My doctors (and I've been to many for this!) have all acted like they've never heard of anyone else with this problem! Finally, a new GP said it is IBS with constipation and would I like to try a new drug (Zelnorm). Just like many of you, I wondered if that amazing feeling is what normal people feel every day. I keep hoping for an alternative that works and I appreciate reading about all of your efforts and to just know that there are others out there!!!
Does anyone have any suggestions for an "emergency"? My sister works in a nursing home and the residents always ask for "the bomb" which is milk of magnesia followed by a cup of prune juice but it doesn't really work for me. Any ideas when you're desperate? Thanks!