[Rose]

This might be a long post, but I beleive worth the read especially for those like crnkr and sstorm who tried Zelnorm, but it didn't work. I am 6 weeks into the clinical study for Zelnorm. I have always been pretty sure I got the actual drug and not a placebo, because it "helped" me a little, but definitely not as much as I had hoped. Although over the past couple of weeks it didn't seem to be helping at all so I started thinking maybe I did get the placebo. Anyway the instructions I received were to take it one half hour before breakfast and one half hour before dinner (which I have done faithfully) However 3 days ago, not having the liberty to play around with dosage, I decided to change the "time" in which I take it and I am hoping it is not a fluke, but the results have been amazing. I usually don't eat breakfast until I get to work at 9:00 a.m., so I was taking the Z at 8:30 before I left my house. However 3 days ago I decided to take it immediately upon getting up in the morning at 6:00 a.m. followed by my usual 2 cups of coffee. Since changing times, by 7:00 or 7:30 a.m., I have been "running" to the toilet and I "go" at least 3 times..sometimes more!

I still don't eat my breakfast until 9:00 when I get to work and I have found I usually have to "go" again around 10:00 or 10:30.

I have also been taking my evening does at least 2 hours before dinner instead of a half hour before and I have been "going" again before bed. Granted, the stool is rather soft, but not really "D", but being a true "C" person soft stool or even "D" doesn't bother me at all. I really feel if I could play around with dosage things would be even better. I don't know if I am on the 4 milligram dose or the 12 milligram. In any case, I urge those of you who have said the Z doesn't help you to try it on an empty stomach at least 2 or 3 hours before eating instead of the half hour before and see if it makes a difference. Good Luck. I just hope it keeps working for me, because I am actually starting to feel better!

 

[crnkr0827]

rose:thanks a million for thinking about those of us that have not had good results with Z.i do have a small quanitity left and will certainly follow your instructions...i have nothing to loose...except.....again, i really appreciate your posting. i will let you know and i hope this "fluke" continues for you.carol

 

[Guest]

Hi Rose,I am going to follow your suggestion too. I'm willing to stand on my head if that's what it takes. I am so dissapointed in my Zelmac experience so far. I got mine from Mexico and started taking it on December 26th, less than one month ago, thinking that my prayers had been answered. I've tried 3mg before breakfast and 3mg before dinner, and didn't have much improvement. I then decided to followed the instructions from the Swiss dosage suggestion and took 6mg before breakfast and 6mg before dinner. That didn't help at all. I'm now back to the 3mg in the morning and 3 mg before dinner. I just don't understand why this has to be so hard. I'm so depressed about this, it's hard to look forward to a future of constant pain, even with Zelmac. I'm getting married in 5 months, and sometimes I think about calling it off, becuase I don't see myself leading a very happy life with this hellish disease.

 

[Guest]

Hi Rose,I have another question for you. In the study, what dosages are involved? 4mg and 12mg and placebo? From past studies, hasn't that been the case? Anyway, what is strange to me, is that if the studies are 4mg and 12mg, then why does Zelmac come in 6mg that has to be split into 3mg, which doesn't even match the study dosage? Just wondering, can someone explain this to me?

 

[Rose]

Cloe, to the best of my knowledge my study is the first one to experiment with a 4 milligram dose. From everything else I have read concerning previous studies they always involved either 6 milligrams or 12 milligrams. I beleive Novartis made up the 4 milligram dose specifically for this study, which by the way is being conducted across the country..not just in Massachusetts. I really hope taking it at least 2 or 3 hours before eating will help those of you who have not seen good results. And at least you are able to play around with dosage...a luxury I do not have. Good luck, please let me know how you do.Your welcome Carol. I hope the change in time will be the secret to it helping you. Let me know!I will be keeping my fingers crossed.

 

[chelsea]

Rose, Just wanted to say thank you for this post. Today I followed your suggestion and took my Zelmac at 6 AM this morning and didn't eat anything until 8:30. My first BM was at 9 AM, which is usually not until 10:30. After drinking some coffee, about 1/2 cup, I went a second time. Right now I feel pretty good, and it's 9:45 AM. There is a little crampiness, and the second time was pretty loose, but I'd rather be able to go loose than not at all. Prior to this, I feel that the Zelmac has had some effectiveness, however, it seemed like it took longer in the mornings to be able to go. My problem is that I can't seem to 'go' anywhere else other than at home, so I won't leave the house until I feel like I have gone enough. Luckily I have the luxury to do this, since we have our own business and my hours are flexible. But getting out of the house earlier is my goal. Keep us posted on whether this regimen continues to work for you.

 

[Rose]

Hi Chelsea,Day 4 and it is still working. If I take it as soon as I get up...then have two cups of coffee, within an hour to an hour and a half...I am "going". I went about 4 times this morning at home. I got to work and ate my breakfast which usually consists of 2 nutrgrain bars and at 11:00, I had "D", but as I said earlier I don't mind having "D". To me anything is better than "C". I also hate "going" anywhere, except my own house, but I am able to "go" at work as long as nobody else is in the ladies room. We have a 2-staller here and if somebody is in that second stall..I can't go...luckily this morning nobody was in there...although even if there was, I had "D", so I wouldn't have been able to hold it anyway..but it would have been embarrassing. I wonder how Carol made out? Carol are you other there??????

 

[GailSusan]

Rose, Thank you for the valuable dosage info. I keep saying that Zelnorm is a tricky drug in terms of getting the dosing right. I had just the perfect dosage for me during the clinical drug trial 3 years ago, which I still have not been able to recreate. It seems to me that with Zelnorm less is more and the more time you leave between when you take it and eat the more "D" you have. Thanks.

 

[jimmye]

Rose, is there anything else you might have changed? As I posted in another place I am suspecting too much psyllium was causing zelnorm to be less than totally successful for me. Do you use psyllium? Do you use other things like magnesium? Hope I'm not being invasive but I'm trying to have some peace of mind and body wellness it has been too long since I have had either where this issue is concerned. I received a notice from the gastro dr. I go to saying food does interfere with the absorption of zelnorm so it makes sense to wait at least 30 min before eating, I was waiting at least an hour but as I said I think other variables were coming into play. Thanks, Jimmye

 

[trbell]

jeff posted a link on the ZAG list to the FDA testimony on zelnorm last year. It's very interesting reading and I think it copuld be reposted here - there is some interesting info on dosage (trials up to 20mg a day), placebo effects, the amount oftime needed to tell if it works or not, etc. Since the is a problem here in that its release was not approved and consequently there is no good information insert I would suggest people might take the time to read the whole document?tom

 

[Rose]

Jimmye, I have changed nothing else, just the time I take it. I do take 2 teaspoons of Perdiem Fiber (brown can), which is psyllium, at night before bed, but I have been taking this all along. Being in the trials, fiber is all I am allowed to take in addition to the Z. Try taking it as soon as you get up followed by something hot, like coffee or tea (no food for at least 2 hours) and see how it works. It is still working for me.Trbell, can you post the link for the article?