# zelnorm desensitization



## zeppod (Feb 29, 2008)

hi,i need some help. lately zelnorm has been less effective. i took a week off and then it worked. then i waited three days and took it again and it didn't work. do i need to take a longer time off? had anyone tried taking two pills at one time?any and all suggestions will be most welcome!thanks in advance,zeppod


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## sameeg (Oct 27, 2009)

Zelnorm isn't a medication that is only supposed to be taken 'as needed'. It is supposed to be taken twice a day before a meal, (once in the morning prior to breakfast and once in the evening prior to dinner) and in order for it to be effective, it's to be taken regularly on an on-going basis.


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## Tiss (Aug 22, 2000)

I take 3-6mg every day and it still works for me after many years of taking it. Maybe try taking it every day. Someone on the board once said the "less is better" with zelnorm and I have found that usually, if I'm not under stress, 3mg works pretty well. But I have taken up to 2 pills on occassion. I don't take any at night either. It seems to be one of those drugs which work differently in each individual. You gotta find what works for you. Good luck! Tiss


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## Jeffrey Roberts (Apr 15, 1987)

Is it possible that you have something else going on in addition to C and that's why the Zelnorm isn't having the same efficacy? Since Zelnorm is only available under FDA emergency access, I would discuss this with your doctor before trying to make some adjustments on your own.Jeff


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## ocelotito (Nov 8, 2009)

I just started taking zelmac almost a week ago. The first days it worsened my problems, I was more bloated and I needed a laxative (and it gave me a killer headache). It took about 4 days to start working. I have been regular for 4 days, actually started out having diarrhea. And I haven't been seeing that uneven left side distention. THe doctor prescribed it twice a day but as I am terrified of prescription drugs (and I didn't trust her that much) I have been taking it once a day. If things are still uncomfortable in a week I may try taking 2. But for me, as long as I have a BM a day and I'm not bending in pain, it's a big improvement.


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## zeppod (Feb 29, 2008)

i have been taking it many years as well. my pills are 6mg. i also have the generics, but neither one seemed to work. i guess i will try going back to one a day and see how it works. if it doesn't maybe i will try to take a month off - although i can not imagine how i would survive that....thanks guys!!!any additional input still very appreciated!!zeppod


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## annie7 (Aug 16, 2002)

HI Zeppod -- so sorry to hear you're having problems with zelnorm---that's really frustrating isn't it--to find suddenly that it seems to have stopped working.i've been taking zelnorm (now tegibs) since 2005 and during that time i have had to play around a lot with the amount of the dose as well as the frequency with which i take it. zelnorm never worked every day for me--no matter what dose i took. so i started taking 6 mg in the am only every other day--mon-wed-fri--and not taking it on the weekends and also taking a week off it every three or four weeks and i had fairly good success with that regimen although sometimes i still had problems--usually on fridays--it just didn't always work as well on that third day.i remember reading some people on the board mentioned their docs recommended taking a 12 mg dose once a day if 6 mg stopped working. so (about a year ago) i started taking 12 mg in the am and had much better success with that. still had occasional problems with friday--that third day--not working. about four weeks ago i started taking 12 mg every two days instead of every other day. that is working much better. of course what jeff said about checking out zelnorm dosages with your dr is definitely the safest thing to do...it sure is frustrating though, isn't it. i've been through bad zelnorm patches myself. i truly wish i were one of the lucky ones for whom it works every day.....or yes you could try taking a break from it for a longer period of time than a week. i remember reading here on the board that's what some docs were recommending to people who were having problems--taking one, two or three week "holidays" from it----some holiday, right? i know exactly what you mean about surviving that!!! good luck to you! i hope it starts for you again.oh and you are taking it on an empty stomach, right? one hour before food...or even coffee, etc...


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## zeppod (Feb 29, 2008)

annie,thanks for spending so much time on your reply. i will try the 12mg in the morning and see what happens. i truly am loathe to take more than a week off, but if it is not working anyway....i started taking zelnorm when it first appeared on the market. i took it every day - it worked most of the time. then when i could only get it from mexico, i started taking it every other day. it worked beautifully for years. maybe i am getting too old or something, anyway, i will take your advice and fool around with the dosage. tomorrow i will try one zelnorm and one generic. we'll see... thanks again for your kindness i than everyone who has given me suggestions, i will try all of them!!!


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## annie7 (Aug 16, 2002)

zeppod---yes it's really too bad zelnorm is such a tricky drug for some of us. if you go to the constipation drugs board and go back to pages 5, 6 and 7 (or something like that--can't remember exactly) there's a lot of posts on there from way back when zelnorm first came out. everybody was trying it and posting about it and talking about their own results, what their docs said etc. a wealth of info, really. and quite a few people seemed to have problems with it suddenly stop working or not working as well....


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## zeppod (Feb 29, 2008)

oh, @#$%!^&,i'll go back and check. maybe resolor will be the new savior drug. it is so disheartening to know that the availability of needed drugs is based on politics, not necessity...what do you think, can you become desensitized? so frustrating, isn't it...


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## annie7 (Aug 16, 2002)

didn't mean to sound discouraging--sorry---by all means you should not give up yet---try all the suggestions, like you mentioned earlier.. don't give up yet! i haven't. but yes it is truly frustrating.about desensitization...well i'm really going out on a limb here because i'm no expert but i do remember reading various things over the years about serotonin desensitization with regards to the ssri antidepressants. and i know zelnorm affects serotonin but not as much as ssri's. and i remember reading someone's post a long time ago explaining how because of this, zelnorm desensitization couldn't happen--there was a link to an article about it. but judging from others' experiences, it seems that it does happen sometimes. so i don't know...and of course we all differ in how we react to a med and our bodies and reactions change over time...and i've also noticed that sometimes a med or supplement or whatever seems to stop working so i'll quit taking it but if i try it again much much later, it does work. oh and another thing---i found out zelnorm worked better for me once i started taking milk of magnesia every night. others have mentoned it worked better for them when they also took amitiza--i remember someone posting that their doc recommended taking it with amitiza (well not at the same time but in the same day)--said the two meds work better together than either one of them separately. so you might want to try that. or you might want to start with taking miralax with it--or another osmotic. (miralax didn't help me which i why i take mom..)and ibs waxes and wanes too..maybe you're (unfortunately) going through a really bad "waxing" period...i've certainly had that happen.don't give up yet--keep playing around with it. keep us posted..


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## zeppod (Feb 29, 2008)

believe me, i am encouraged by your response(s), not discouraged. it is the dearth of options that is maddening. i did try amitiza, but it made me dizzy. (anyone else experience that?) miralax did nothing, but i will try it in conjunction with zelnorm and i cannot take mom because of the salt content. that is why i am so frustrated. but, i thank you so much for your thoughtful responses. i took one tegibis and one zelnorm this morning. when i get the family off, it will do some research.thanks again!!!zeppod


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## annie7 (Aug 16, 2002)

no i didn't have dizziness with amitiza but i did have horrendous nausea. but that was with the 24 mcg dose--when it first came out. now they have the smaller 8 mcg dose which a lot of people say works so much better with fewer side effects and i was going to try that but my insurance company has decided not to pay for amitiza any more...they cut me off zelnorm too...when i filed an appeal on that they told me i could just take laxatives instead...i know what you mean about sodium in milk of mag. i've found different brands vary widely in amount of sodium content. cvs house brand has lots of sodium. phillips has 6 mg per tbl. i live in michigan and a local chain store there--meijer--has a house brand of mom which is not only very cheap--$4.39 for the largest size bottle--but has potassium (2mg) instead of sodium. so i take that.good luck today! hope the 12 mg zelnorm works for you!


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## zeppod (Feb 29, 2008)

it didn't, but i will look about for the potassium-based mom. is it an mom substitute? or just a variation with potassium?


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## annie7 (Aug 16, 2002)

oh it's milk of magnesia all right. label says: active ingredient in each 15 ml tbl--1200 mg magnesium hydroxide and then down below under other ingredients it lists--(per tbl) 20 mg calcium, 520 mg magnesium, 2 mg potassiumthe other brands i've seen all had various amounts of sodium listed under other ingredients.sorry the 12mg zelnorm didn't work...what a disappointment..


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## zeppod (Feb 29, 2008)

great, i'll look for it tomorrow. i did a bit of research and what i found was that because zelnorm is a partial, as opposed to a full, agonist, the user is much less likely to become desensitized to it's effects. so you are right that the ebb and flow of moods, hormones, etc, probably also affect results (or lack of). wonder how long i could tolerate a "holiday"....


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## annie7 (Aug 16, 2002)

yes you're right--partial agonist--i was finally able to get a chance to go through some of my info on it.yes the "holiday" is hard--especially during the holidays.... the longest holiday i've taken is eight days...but it did the trick.


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## zeppod (Feb 29, 2008)

when you say it did the trick, are you back to the way it was when you first took it?8 days? i will be a very fat person. maybe i will try it after the holidays..


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## annie7 (Aug 16, 2002)

i did the eight day holiday a couple years ago--zelnorm wasn't working and i had a couple weeks off work so i decided to bite the bullet and take eight days off instead of my usual week--one extra day just to be sure. and yeah zelnorm worked great--just like the first time--once i started taking it again.lately when i take a holiday it's been for five to seven days. and thankfully zelnorm works great after that (knock on wood) i think taking it every two or three days rather than every other day has helped too.


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## zeppod (Feb 29, 2008)

you are my new best ibs-c friend!!!thanks so much


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## annie7 (Aug 16, 2002)

oh what a nice thing to say...you're most certainly welcome. feel free to pm me any time if you want--we ibs-c friends must stick together.i really hope zelnorm starts working for you again. when it works, it's great! and life is good....and when it doesn't.... keep me posted..


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## zeppod (Feb 29, 2008)

thanks. i did try to pm you. don't know if you got it. let me know.(don't know how else to contact you)zeppod


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## annie7 (Aug 16, 2002)

got it! and sent you one back.


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