Great...the Zelnorm isn't working as good...I know this happened to others...
#195770 - 07/14/05 04:26 PM
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jessica28
Reged: 08/10/04
Posts: 294
Loc: Phoenix, AZ
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I have been on zelnorm 6mg twice per day for about 2 months now. The last week, my bm's have been inconsistent and not as frequent, having to use magnesium and extra miralax as a boost. I know everyone has different methods, but what would be best? Going off for a day or two and then starting again? Or going off several days? I'm just nervous about the experimenting because I don't want to get too stopped up! Any suggestions would be great. Thanks!
Jessica
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Jessica
#196025 - 07/15/05 10:52 AM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I'm thinking about stopping mine too. I have been on it for about 4 months?
There seems to be some controversy as to wether it is effective long term or only for a few months. I know the package says for 4 to 6 weeks, and it can be continued for another 4 to 6 weeks...so that makes 12 weeks max. Did you ask your doctor what his opinion on this is?
Some people on the board seem to be able to take long term without it losing it's effect...and I heard from a medical doctor that the 4-6 weeks was all it was tested for so it could be used as a daily med with no time constraints.
I don't know what to tell you. I have same questions as you, I'm afraid. 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Rumor has it that these don't work for extended use and therefore, that is why the diet is so dern effective! No pills will stop this forever. It can be used to HELP remedy but that's all.
I am not a doctor, but have learnt this from personal experience.
Are you following the diet pretty closely or better yet, exactly?
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Lana_Marie
Proud Mommy to Bentley Taylor
Born May 12, 2004 9lbs, 3oz
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Re: Jessica
#196117 - 07/15/05 12:49 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I have found that I needed to stop the Zelnorm for weeks before starting it again than each time I take it, it becomes ineffective even faster.
I would suggest not taking it for at least a week. During that time, double your dose of miralax and see how you do. Remember to take the miralax on an empty tummy, shirtly before eating. I've found that it is most effective that way. Of course you need to drink plenty of fluids through out the day for the miralax to be the most effective! Good luck!
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Taking it one day at a time.....
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Each time it had a shorter and shorter time it was effective?
I wonder what Cybil uses now that her "life expectancy" for zelnorm effectiveness has worn out?
I wonder if there is anyone for whom this drug works consistently? 
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Lana Marie
#196126 - 07/15/05 12:59 PM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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Do you take anything for the C or just use the diet? What did you replace the zelnorm with?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Yep! It worked pretty well the first time I took it for about 8 weeks, than stopped working. The next time I took it, I think I got about 3 weeks, now I only get a few days so I "save" it for REALLY bad pain attacks.
The majority of people I have talked too have had the same kind of reaction.
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Taking it one day at a time.....
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Michelle
#196179 - 07/15/05 03:14 PM
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jessica28
Reged: 08/10/04
Posts: 294
Loc: Phoenix, AZ
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I have been doubling up every other day or so on Miralax, but I try to spread it out, because I always run out then so fast and my insurance will only cover it like every 25 days or so. In the morning I'll take my miralax about 30-45 minutes before I eat and it usually works. Then, alot of times I'll take it again on an empty tummy before dinner, like I did yesterday, and it didn't do anything! I did go good this morning, but I KNOW the zelnorm did not contribute. I'm going to not take it over the weekend and try it again maybe on monday and see what happens. I'm traveling also Tuesday-Friday, so that worries me! How soon do you go through a bottle of miralax? Are you taking any fiber supplements too? I cannot remember. Thanks!!!
Jessica
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Did you try not taking it? Any difference?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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How long after taking it do you wait to eat breakfast?
How long do you need to wait after eating to take your second dose?
Can you take your second dose on an empty tummy before going to bed...or do you need to eat something afterwards?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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If your dr writes a new script for the miralax stating for you to take it twice a day, then you insurance should cover more for you! I seem to do pretty well on one cap a day, so a bottles last me about a month but I have a mail in service where I can get 3 months at a time!
I do also take Acacia, one spoon in the am mixed it with the miralax! Travelling always makes me more C!! Be sure to drink plenty of water and be sure to add in some extra insolubles! Good luck!
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Taking it one day at a time.....
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I think I remeber being told 30 minutes before eating or at least 2 hours after you eat and you don't have to eat anything afterwards! 
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Taking it one day at a time.....
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My doctor told me that once you stop it you will return to baseline or worse.
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Michele, are you on Zelnorm as well or do you just use Miralax?
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I took it this morning after two days without....yes, I went much better this morning. I noticed alot more bloating without it as well. I'm just ahppy to have had a much better bm this morning. So, I guess maybe I'll do that once in awhile. We'll see what the next few days brings.
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Re: Jessica
#196884 - 07/18/05 02:12 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I'm currently NOT taking the Zelnorm. I have some on hand but only use them for severe pain attacks or if I get really backed up but the miralax seems to do a good job keeping things moving! At two seperate times in the past, I tried Zelnorm alone but it always stops working very quickly so I always resort back to the miralax.
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Taking it one day at a time.....
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Do you just take the one dose of acacia in the morning? Are you typically just taking one dose of miralax per day? I found that sometimes one dose of miralax doesn't always do it. Are your BM's pretty good? are they watery? Sorry to be so graphic. I just have very, very loose stools...more so with the combo of zelnorm. I do drink tons of water, but I hope that I can find some way to 'bulk' them up a bit, ya know? I'm going on almost a year of miralax. Thank god it's still working. How are you doing on getting pregnant? I'm now trying...this is the first month. I should be able to test by the end of this week, although I'm not counting on it happening the first try. Hey, we can get pregnant and be on miralax together...ha!
Jessica
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I've tried Miralax, but I don't see that it makes much of a difference. How long do you have to use it, before you see that it starts working? I'm afraid to start using it daily, and for it to stop working. I really wish I could get regular on my own. I know this is an unpleasant topic, but one of my problems is that when I go, it's a little (little, little) bit at a time through the day.
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My mistake. Sorry. It doesn't mean anything.
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No, it does!
#197115 - 07/19/05 06:49 AM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I just wasn't sure what you meant by "My doctor told me that once you stop it you will return to baseline or worse."
Are you saying that if you stop the zelnorm, it won't help in the future, or if you stop it you will return to having it work again?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I actually have D but there is a pill that is very similiar out there for IBS-D and I understand the lack of results are quite similar.
Therefore, yes, I just stick with the diet.
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Lana_Marie
Proud Mommy to Bentley Taylor
Born May 12, 2004 9lbs, 3oz
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It took me about 4 days before it started working...I would have little bits throughout the day sometimes, and then it would get better. I think diet and even extra fiber or something helps, or taking two doses per day instead of one REALLY helps. Just make sure you take it on an empty tummy about 30-60 minutes before you eat and you should go bum bum soon afterwards. Drink lots of water too
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Wow! I just recently started chatting on the Boards. I'm sorry. About Zelnorm, my doctor told me that once you stop using it, you return to baseline or worse. I haven't started taking it b/c of its warnings. I'm afraid it may accelerate any predisposition I may have to kidney disease since both my parents wound up on dialysis before passing away.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Well, you take Zelnorm b/c you're constipated. While on Zelnorm, you're supposed to be having bowel movements. Once you stop taking Zelnorm, you'll go back to your original state, (for example, maybe you were only able to have a bowel movement once a week), or worse (maybe you'll only be able to have a bowel movement once every two weeks or week and a half. Understand?
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Zelnorm is dangerous. See the FDA warning in the research library. It stops working altogether eventually. I quit taking it and started the acacia, water and cal/mag supplements suggested here and am now stable. I would drop the Zelnorm altogether. There are safer ways to get things moving. Talk to your doctor.
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God is Faithful!
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How bad was your C? What is the difference between Acacia and Benefiber.
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Re: Jessica
#197212 - 07/19/05 09:46 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I've been on miralax about 4 years. Really do need to take it everyday. It hasn't lost any of its ability to work for me like the Zelnorm did. Sometimes if I travel or eat something I shouldn't, I'll get a little backed up and just add a second dose of miralax in for a day or two.
My bms are "loose" a lot from the miralax but I'd rather have loose bms, than no bms at all!! If yours are too loose, try decreasing the amount of miralax you take a little or increasing your sfs.
I do just take the acacia once in the, regardless of how much miralax I take. Yes, miralax in safe during pregnancy and I know that when I'm pregnant, my digestive systems STOPS! I was sometimes having to take three doses a day. DO NOT take the zelnorm while pregnant though! Good luck getting pregnant! I'm also testing Friday! I'm sure I'll break down and test before then but I get the offical blood test done Friday! This will be my third month of trying since my third miscarriage in December. I did two clmid cycles (evil, nasty drug!) and this past cycle I did femara, which I tolerated so much better!! The last couple of days, my boobs have been sore and I've been really moody but I'm also taking progesterone which can cause these side effects. I try not to let myself get my hopes up too high because its too much of a let down if I'm not pregnant. Good luck!!
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Taking it one day at a time.....
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How bad is your C when you're not on Miralax?
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Re: Jessica
#197282 - 07/19/05 10:56 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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BAD! I would have maybe one BM a week, if I was lucky! It wasn't too uncommon for me to go 2 weeks without going potty!  I started using otc laxative once or twice a week just to go, thats when my dr told me about miralax! now, Its a rare day when I don't go potty! 
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Taking it one day at a time.....
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Do you find that Acacia is better than Benefiber or are they different?
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I had suffered from chronic C for almost 2 years before I figured out what was going on. When I was originally diagnosed IBS I was D, so I couldn't believe/figure out that my body had changed.
I was given Zelnorm and found some relief for about 2 weeks, then the C got much worse. I took the Zelnorm as instructed for 6 weeks, and during that time found this site. Having tried every fiber on the market with no success, I immediately began Acacia and felt relief almost immediately. I VERY SLOWLY increased the dose over a period of 6 months until I found what worked for me. (18 grams or 2 1/2 t before each meal)
In the interim, I contracted a gastritis that further complicated things and resulted in every GI test known to man over a period of 2 months, only to be told, "Yep, it's your IBS."
Soooo, slowly, one at a time, and after much research, I added a cal/mag supplement, an Omega oil blend and a good probiotic, and I am pretty much stable. I can once again eat a wide variety of food, and I take no meds other than a very rare antispasmodic. (rare as in once every 3 months or so)
Hope you find stability soon. Sorry if this is too much information.
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God is Faithful!
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Re: Jessica
#197301 - 07/19/05 11:37 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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They are both SFS but everyone seems to respond differently. I had never actually tried benefiber but had tried fibercon and citrucel. I like the acacia because it also has a pre-biotic in it, which, over time, while help balance the guts natural flora!
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Taking it one day at a time.....
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