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Amitiza not working


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#1 Luke

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Posted 14 May 2007 - 11:40 AM

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Hi everyone,My heart was breaking this morning as the love of my life was crying on my shoulder. The jeans that had been fit her loosely the day before would barely button, she was nauseated from her medication, had not been able to have a BM for several days, and no treatment other than Zelnorm has had any effect on her constipation. Until I started dating her about 8 months ago, I don't think anyone took her issue seriously. She has been constipated for as long as she can remember and would only have a BM the week before her period. Her parents and her doctors just made her take stimulant laxatives. Now she has almost no motion in her colon. I finally convinced her to see a doctor again. After having repeated x-rays with the little metal rings and a colonoscopy, the doctor prescribed Zelnorm. It started working immediately and for the first time in her life she had regular bowel movements. About a month later, the drug was recalled and the doctor put her on Miralax which had little effect other than lots of pain and bloating. Now she is on Amitiza, which makes her feel miserable, and does little to promote motility. I have been searching for any way to help her, but have no answers. I hate to see her cry. Can anyone help?Has anyone tried ordering Tegibs from an Indian pharmacy like alldaychemist.com?What about Zelmac from a mexican pharmacy? what a site did you use?Any other suggestions?Thank you,Luke


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#2 SophieUK

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Posted 15 May 2007 - 08:43 AM

Hi Luke - I think the general view is that Tegibs is a bit of a risk and may not actually be Zelnorm at all, or at least not the exact formula. Some people have ordered from Mexico, I think www.medsmex.com is one site. Can be expensive though and, technically, I don't believe it is allowed to order prescription drugs from other countries, although lots of people obviously do it.Your best bet might be to ask a doctor about using the Emergency IND (Investigational New Drug) program (presuming you and your girlfriend are in the US). The Emergency program lets doctors prescribe new or recalled drugs as long as they have assessed the risks to the patient (so that would be heart problems in this case) and as long as there are no good alternatives for the patient.Your girlfriend's doctor would need to call the FDA to get permission to use the drug and fill in some forms etc. So far I haven't heard from anyone who has been successful because it is still early days, but I know someone who has applied for the drug under this program, and they are hopeful that they will receive it.I really hope things improve for your girlfriend.

#3 Consgasbloty

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Posted 15 May 2007 - 02:38 PM

I had to discontinue my Tegibs less than 2 weeks after I started taking it because it was making me feel horrible. It definitely does have a laxative effect, but it is NOT Zelnorm. It seems like all of the other pharmacies online that offer "Zelmac" actually sell Tegibs currently. My life has changed dramatically since I stopped taking Zelnorm. My bf and family don't know what to do with me anymore as I can't think of anything else but Zelnorm and how my life is misserable without it. I will try to ask for the IND but quite frankly I don't have much hope because my primary care so far doesn't think it will work out. I just pray and hope that the FDA will come back into their senses and will put the ZELNORM back on the shelves as soon as possible. Meanwhile its an everyday struggle for me.

#4 Lindsay Nicole

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Posted 15 May 2007 - 04:20 PM

Luke~Your girlfriend's story sounds so much like my own. I started developing seriously debilitating symptoms 3 years ago... and after 2lmost 2 years of tests and doctors and meds that didn't work and hospitalizations and no one being able to help.... i finally found a doc that perscribed me zelnorm and i literally got my life back. then the day that it got recalled i got a phone call from my best friend, because she read about the recall online, i almost fell to the ground in the middle of my grad school campus. i was so distraught because it was the first and only thing to ever help. my doc had perscribed miralax for me before it was OTC and it only gave me pain, just like you described with your gf. i went to my doc a week ago and he perscribed me amitiza. i took it that night and 3 hours later got extremely nauceous, dizzy, the chills, and just felt terrible. i can't believe your gf is still taking it. i didn't take it after that night and have yet to call my doctor. i'm trying the severe inc in natural fiber approach... whatever it won't work but i can't deal with this medication merry-go-round. The form that comes with my medications from the pharmacy always say "Remember that your doctor has prescribed this medication because the benefit to you is greater than the risk of side effects" but if the side effects are worse than the benefit then its not worth her pain. Does she have a gastro? She should really talk to someone because if she's miserable then the meds really may not be worth it. I wish her the best of luck.

#5 hungry

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Posted 15 May 2007 - 09:44 PM

I have been miserable as well off of Zelnorm. My doctor applied for an IND 3 weeks ago and still no reply. I am also taking amitiza and it doesn't work for me either. What I have done unfortunately is stick to a liquid diet to keep the pain down. I take senna 3x a day, miralax and amitiza at night. Also, I am traveling to get Zelnorm. I have spoken to the FDA and I have written letters. Her doctor may just give her an antidepressant so she can "learn to live with it" which I think is pathetic. My GI doctor doesn't believe I will have any health threat from this and has encouraged me to find a supply or get domperidone which is a less scary version of Reglan. One can get this from Canada. But if you are going to go this route get Zelnorm and make sure she is monitored with yearly ekg's like me. It is amazing that she has someone like you to support her. My boyfriend is driving to Mexico to locate a reputable hospital pharmacy. I have heard that this is the best way to get the real thing

#6 hungry

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Posted 15 May 2007 - 09:51 PM

I had to discontinue my Tegibs less than 2 weeks after I started taking it because it was making me feel horrible. It definitely does have a laxative effect, but it is NOT Zelnorm. It seems like all of the other pharmacies online that offer "Zelmac" actually sell Tegibs currently. My life has changed dramatically since I stopped taking Zelnorm. My bf and family don't know what to do with me anymore as I can't think of anything else but Zelnorm and how my life is misserable without it. I will try to ask for the IND but quite frankly I don't have much hope because my primary care so far doesn't think it will work out. I just pray and hope that the FDA will come back into their senses and will put the ZELNORM back on the shelves as soon as possible. Meanwhile its an everyday struggle for me.

Keep looking for a doctor to do an IND and do it quickly. I spoke with a doctor from the FDA and there is a big line for the IND's. Many doctors won't do it so I had to shop around. I have been waiting quite a while and my doctor has already filled it out. I am also obsessed with Zelnorm. I even have nightmares now. I am stealing it. This is so pathetic. I have ordered it from Mexico but I don't know if it is real yet. I am doing enemas everyday, only have liquids and am disgusted. Have you tried medsmex? Is it tegibs? Now I am afraid to take it.

#7 hungry

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Posted 15 May 2007 - 09:54 PM

I had to discontinue my Tegibs less than 2 weeks after I started taking it because it was making me feel horrible. It definitely does have a laxative effect, but it is NOT Zelnorm. It seems like all of the other pharmacies online that offer "Zelmac" actually sell Tegibs currently. My life has changed dramatically since I stopped taking Zelnorm. My bf and family don't know what to do with me anymore as I can't think of anything else but Zelnorm and how my life is misserable without it. I will try to ask for the IND but quite frankly I don't have much hope because my primary care so far doesn't think it will work out. I just pray and hope that the FDA will come back into their senses and will put the ZELNORM back on the shelves as soon as possible. Meanwhile its an everyday struggle for me.

Keep looking for a doctor to do an IND and do it quickly. I spoke with a doctor from the FDA and there is a big line for the IND's. Many doctors won't do it so I had to shop around. I have been waiting quite a while and my doctor has already filled it out. I am also obsessed with Zelnorm. I even have nightmares now. I am stealing it. This is so pathetic. I have ordered it from Mexico but I don't know if it is real yet. I am doing enemas everyday, only have liquids and am disgusted. Have you tried medsmex? Is it tegibs? Now I am afraid to take it. How will I know if it is tegibs? Which pharmacies have you tried so I don't go there?

#8 Luke

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Posted 15 May 2007 - 10:30 PM

Thanks everyone for your advice. I never really trusted Tegibs, but things are just getting a little desperate. She was so happy for the little time that she was on Zelnorm.Sophie: I believe the Emergency IND will be the next route we try. I have heard a lot of people saying that their doctors won't take the time to do the paperwork, but hopefully our doctor is different. Also we are considering and attempt to enroll in the Renzapride drug tests. There is a test center in our area. Do you know of anyone who has been a part of one of these trials? If so, what was their experience like?Consgasbloty: Your story sounds a lot like hers. I hope that your BF is open to discussing topics that are normally consider indecent. You really need his support and understanding. Our doctor has a positive outlook and is trying the best she can to find a remedy. She has taken a personal interest in my girlfriends case. Good luck, keep up your hope.Lindsay: Your post-diagnosis story is almost identical. She had been to some GI docs before with little result. My mom is a nurse at the local hospital and recommended an internal medicine doctor there. She is going to try just taking one Amitiza pill at night instead of the regular 2x daily dose. The question we always ask is how a drug with so many side effects that occur in around 35% of its users can stay on the market, while Zelnorm gets recalled.This forum has provided her with a major boost in spirit. Before finding this, she thought she was the only one her age suffering like she is. Just knowing that she is not alone has helped so much.If any other disease was found to effect as many people as IBS does, it would be all over the news. There is a stigma associated with talking about fecal matter, gas, and bowel movements that prevents open discussion about IBS issues and most likely prevents it from entering the mainstream media.Thanks for your help,Luke

#9 SophieUK

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Posted 16 May 2007 - 11:34 AM

I really hope the IND comes through for your girlfriend Luke, and it's great that you are supporting her like this and that the forum is helping. So many people underestimate the impact that IBS can have on a person's life.I'm afraid I don't know of anyone at the moment who is on the Renzapride trial, but it does sound like something that would be worth considering. I believe that if the drug works for a patient during the trial (assuming of course they get the drug not the placebo) then the doctors can often arrange for the patient to have access to the drug before it is released nationwide.Amitiza does seem to be heavy on the side effects, maybe as you say a smaller dose might help.

#10 fordgirl96f250

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Posted 17 May 2007 - 03:35 PM

Tell you're girlfriend to buy a reusable anema bag at you're local pharmacy and use 1 cup of black coffee to 1 quart of warm water and give herself an anema everyday for 1 month. I was on zelnorm for 4 years then they put me on amitza I couldnt breathe and had severe side affects from the medication! Tell her to stop taking it, its bad news!!! I did the anemas everyday for a month and noticed strings in the toilet. I told my masseuce and she told me it was roundworms and that everybody gets them at some point. Tell her to do a colon cleanser once a year. It will get rid of the parasites in her intestines. The worms come from meat, swallowing water in a public pool or lake, and the number one cause is fresh vegetables that aren't rinsed well. The doctors won't tell you this they just want to medicate you! This will help ive been doing it and im getting better.Hope this helps.

Hi everyone,My heart was breaking this morning as the love of my life was crying on my shoulder. The jeans that had been fit her loosely the day before would barely button, she was nauseated from her medication, had not been able to have a BM for several days, and no treatment other than Zelnorm has had any effect on her constipation. Until I started dating her about 8 months ago, I don't think anyone took her issue seriously. She has been constipated for as long as she can remember and would only have a BM the week before her period. Her parents and her doctors just made her take stimulant laxatives. Now she has almost no motion in her colon. I finally convinced her to see a doctor again. After having repeated x-rays with the little metal rings and a colonoscopy, the doctor prescribed Zelnorm. It started working immediately and for the first time in her life she had regular bowel movements. About a month later, the drug was recalled and the doctor put her on Miralax which had little effect other than lots of pain and bloating. Now she is on Amitiza, which makes her feel miserable, and does little to promote motility. I have been searching for any way to help her, but have no answers. I hate to see her cry. Can anyone help?Has anyone tried ordering Tegibs from an Indian pharmacy like alldaychemist.com?What about Zelmac from a mexican pharmacy? what a site did you use?Any other suggestions?Thank you,Luke







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