View Full Version : Wt loss with Elmiron??
:cat: Hi!! I have been on Elmiron for two years now, and thankfully it has helped me. I can't go without the three pills a day, otherwise my ic flares horribly! I still get the break thru pain, but my ic is doing much better. :woohoo:
I was just wondering if anyone else has lost weight with Elmiron?? When I first started the med, I lost 10 pounds in the first three months. I was very sick, but after trying everything else for my ic, this was really the last option. I refused to have anymore instillations after the DMSO, and Hydro's only help for a few months. Thank God the Elmiron worked. I was ready to apply for disability.
The horrible side effects went away, but I still get nauseated, and diarrhea, and I don't have much of an appetite. I also bruise and bleed very very easily. Sometimes just by coughing can make me vomit. In total I have lost 25 lbs in one year. This isn't a bad thing at all for me, since I could certainly lose that weight, but I am down to a good healthy weight now, and I am afraid I will keeping losing the weight. My doctor doesn't seem concerned about it at all, but all the doctors in my area don't know much about Elmiron. I also follow a very strict IC diet, and with my severe food allergies, I have a very very bland diet. :mad: . I just love ic. :cussing:
Has anyone else lost weight? Or is it just me???
I searched the net and these message boards, but I can't find anyone else that has lost weight while on Elmiron.
Thanks! :kiss: :kissing:
11-05-2004, 01:41 PM
I wish? I have gained weight since being on it. I do get really bad diarahea (is that how you spell it) and some times I cant make it to the bathroom its horrible. I have been on Elmiron for 1yr
Mabey its the diet, that is making you loose weight?
11-05-2004, 01:55 PM
I was on Elmiron for 1 year. I also had terrible diarrhea and lost a lot of weight. The longer I was on it, the worse my diarrhea got and I was the thinnest I have ever been. I am thin to begin with, so it was a real problem. I wanted so badly for this drug to help me, but it never did anything good for me. I gave it a good try!
Best of luck to you. :angel:
11-05-2004, 03:52 PM
I lost 60 lbs. in the first 9 mos after developing IC. For me, it was the diet that did it. I didn't start Elmiron until 6 months into the diet. Shows how bad my pre-IC eating habits were! Fear of pain motivated me in way nothing else had done before. I stopped losing weight and have stayed the same for a year now. Rats! I have another 20 lbs I'd really like to shed. I added Elavil almost 2 mos. ago and am watching the scale closely so I don't start back the other way.
11-05-2004, 04:22 PM
:hi: and :welcome: to the ICN family.
I also was loseing weight on elimron and had to stop it the same side effects you are having i couldn't handle it.
I'm very glad it is working for you other wise its always good to here that elimron is helping someone.
since i couldn't take elimron i went to the heparin and marcaine treatments at home. Heparin is a stronger form of elimron without the side effects.
its been a mircale drug for me.
I hope you find your answers soon
sending you hugs and prayers
11-05-2004, 09:56 PM
I just started elmiron. So far no diarrhea but I'm hoping for the weight loss.
11-06-2004, 05:11 AM
I just started Elmiron 2 weeks ago, no side effects yet, knock on wood!
11-07-2004, 02:33 PM
I hope it works for you ladies. Good Luck on it.
Thank you for your replies. It is always good to hear from others with the same conditions and problems. I guess it is a combination of Elmiron making me nauseated and no appetite and the ic diet. I can live with the side effects, since anytime I try to cut back or go off of Elmiron (expensive!), I get severe bladder pain. It's worth a little weight loss and $55 a month. Thank you all, and I wish you the best of luck!!!
11-09-2004, 12:28 PM
I hear your pain. I will be starting Elmiron if the instillations don't start helping soon. I really hope I don't get weight loss because I'm very thin and after being on the IC diet, I have lost more weight. I am hoping the weight loss doesn't happen to all.
11-10-2004, 12:31 AM
I don't get diarrhea but when I have to go, I have to go right then! I have heard that opening up the capsule and taking just the powder helps with diarrhea. I guess it's something about what the capsule is made of. (Looks like they could make it out of something else.) I have started doing that. It's very messy but I hope it helps. I have not lost weight. If anything I have gained weight because I take Paxil and it has a tendency to make you gain (and ruin your sex life!).
02-23-2006, 01:40 PM
I have lost alot of weight because of IC. In the last year I've went from size 10Petite to 4Petite - Size 4 pants are a little baggy. I'm almost 46 and haven't been this small since I was a teenager. I'm not too disappointed but size 4 is quite thin. The reason is I can't eat alot at one time. If I get too full, I'm in pain. I feel much better eating something small and light every 3 hours. I started taking Elmiron after surgery about 4 1/2 weeks ago. I'm quite sure that it's helping with the pain and frequency. I have just a little loose stool (yuk, sorry) but it's not too bad. However, I'm concerned about the hair loss. My hubby bought me a tub drain cover, so now I can see just how much hair I lose each morning. It's a consistent amount each time and quite a bit. I will never complain about my thick hair again.
02-24-2006, 12:07 AM
I have been on Elmiron for 3 months as of today. I have not had any side effects, but it did curb my appetite big time....i eat smaller meals now because i seem to get a full feeling quickly...i used to be able to clean my plate no problem....but since day one on elmiron, my appetite has been much less.
02-24-2006, 01:44 AM
Yes, I think the Elmiron has definately curbed my appetite.....which is actually REALLY BAD for me because I had already lost ALOT weight because of the IC pain before I was diagnosed and treated.
What's weird, is I have been trying to GAIN weight this last month and the Elmiron is sabatoging all my efforts!! I had gained a few lbs only to get back on the scale earlier this week (because my husband was nagging me about my low weight) and I was pointing out how I was eating so much more. But curiosity got the best of me and I got on the scale and was like "WHOA" ***scratches head***** How the heck am I still losing weight? I feel like I've been eating more frequent "smaller" meals.
I've noticed I am really nauseous for about 3 hours after taking the Elmiron, and I usually have to mentally force myself to eat because I just cannot lose anymore weight! lol BUT, my metabolism has sped up because of it (diarrhea) yikes. I'm hoping once I get into pain management I can eat more and get to a healthy weight! Pray for me!! :help:
I'm leaning more and more towards instills.......
I have also been on Elavil for a few weeks and I'm not having the "hunger" side effect of that at all.....I suppose that is because of the Elmiron, ehh?
Have you noticed that certain food smells bother you??? I don't know if it is heightening my senses of smell, or if the Elavil is, but some smells are nauseating.
02-24-2006, 01:49 AM
I lost 15-20 lbs. Went down to a siz 0-2!
02-24-2006, 02:21 AM
I was a size 4 about a year and 1/2 ago. Now, my 0's are literally hanging off of me! I had to start buying European sized jeans, like True Religion, AG, and Hudson in a size 24 which is a little smaller than an American size 0! I can't even wear 0's from alot of stores like Limited, or American Eagle! :(
My mom was here at Christmas-time and we were at the mall at Cache, and she made some remark to the sales lady at Cache like "well, my daughter is too skinny for your clothes here......I should probably take her to Limited TOO and she laughed"
I'm 36 years OLD!! It really burned me when she said that, like sheesh mom, I asked to be sick and in pain all of the time. Whatever.
I'd actually love to be back in a 2 or 4. I think women look better at a healthy weight.
02-24-2006, 02:29 AM
Kara I hear you...I'm 44 so going into the "JR" section just doen't fly with me. I am fortunate that I'm into weight lifting with my husband and, I also jog so I don't really look skinny.
It is tough any way you look at it, like you said, we didn't ask for this disease and you don't want everyone knowing it either!
02-24-2006, 02:42 AM
As long as I've been on Elmiron, I've never lost weight, but I have been on Topamax, since last May and I have lost 40 lbs. I know that some of my doctors are getting to the point that if I lose any more they are going to have to talk to the prescribing doc and get me on something else.
02-24-2006, 02:42 AM
Tell me about it!! I buy from the Jr's department too. I usually just take my teenage daughter with me LOL...but some of those clothes are just uber trendy and don't work for me!!
Its alot different being thin in your 30's and 40's, because my skin just sags on my arms and some other places and its gross!!
I've invested in alot of sweats lately! :) I'll just hide!
02-24-2006, 02:46 AM
at least you have a teenage daughter to go with. I walk in the department stores and feel very awkward. The girls look at me like, like oh boy here comes a middle aged women looking for younger looking clothes! LOL...
Oh well, you got to do what you got to do.
02-26-2006, 10:31 AM
wow I have lost weight but not that much that is alot of weight to loose. I know personally its hard everyday its a battle. Good Luck ladies
03-04-2006, 08:38 AM
I think the Elmiron has curbed my appetite as well, and as I am needing to lose at least 70 pounds, I will gladly take that side effect. Ive been on it almost a month along with cystoprotek. My hair seems fine and even if it does fall out some I have enough that I should be okay. Besides at this point Id rather have thin hair than live in pain every day.
03-04-2006, 01:33 PM
I'm not losing much, probably because the elavil is giving me a sweet tooth. I think maybe a pound lost every other week, so it's slow. I'm at a much healthier weight now than I have been for the past few years of fertility treatments and 3 pregnancies, but I'd like to lose another 10 pounds to be at my "fighting" weight. It's kinda nice not having to worry about fat grams or calories anymore, because the high fat/cal foods are not on the OK list, which means I'm not eating them. Plus, I'm not drinking 2 bottles of wine per week anymore. That's a huge savings! Last summer I weighed 150, and I'm down to 136 today.
I'm lucky that I never had any side effects from the elmiron. I take 2 twice a day, 1 hour before breakfast and dinner.
03-06-2006, 12:28 PM
blegh, i wish i was in the same boat you guys are in :p i initially lost about 20 pounds when i had to first get back on the IC diet but i've been cheating here and there (i only flare very badly from a few foods, a lot of things (ie chocolate, alcohol, mayo, a lot of processed foods) i can get away with so i snack when i shouldn't) and i've been in self-pity mode which involves a lot of ice cream :p bleh. needless to say the 20 pounds are back and living with me like a parasite. booooo.
at least the elmiron seems to be helping somewhat, though.
03-06-2006, 12:41 PM
I lost quite a bit of weight. I think it has alot to do with diet and most pain meds are appetite suppresents(sp) and the deppression that has come along with my IC hasn't helped either. I don't think it is any one thing, I think it is a combo of things.
03-06-2006, 11:45 PM
True, It probably is a combo of things! I think Ultram supresses my appetite too. I've notived that I don't want to eat when I take Ultram, but the Vicodin has the opposite effect, I want to eat more! Maybe that's because I feel *safer* eating after taking a pain pill? I live in fear of my bladder. :(
I wish I could cheat!!!! I cheated once early on in treatment and had some red wine and boy did I pay dearly for it! Right now, I'd love to attack a box of girl scout cookies,but I keep remembering the wine, banana, and avocado experiences! Haunting images of off the scale pain! ugh.
03-07-2006, 03:35 AM
I stopped taking Ultram at the begining of Jan. and have gained back 4 lbs of the 10 I had lost. I know that 10lbs doesn't sound like a lot to some people but when you are already just over a 100lbs it is a big deal.
I also dropped a lot of weight to the point of looking sickly. Now I've managed to put some back on,almost to my ideal weight. I don't know why the Hollywood types want to look so bony. I think women look much more feminine with some curves.
07-15-2007, 02:32 PM
I too have lost weight since I have been diagnosed with IC....I think
it is a combination of the ic diet and the elmiron I am on....I am down
to a size 6 or sometimes 4 and am not happy with the way I look...Actually
just today some friends of mine were concerned of how thin I was......
YUKKK!! I am going to give the elmiron a chance for I am having those
G.I. issues everyone talks about the diahrea, the stomach pain but I am
going to put it in a clear capsule and see how it goes...Not sure how long
I can do this for though ..It has kept me from running to the uro for
dmso treatments so I try my best...I also was wondering if anyone knew
of any support groups around the massachusetts area that I could look into
to..It would be nice to talk to some people that know how I feel..I have
had ic for about 3 yrs. now and I do believe it is getting to me...
So if you could drop me an e-mail I would appreciate it..
Ic 3 yrs.
elmiron 2 caps 2x a day..100mg.
protonix 40 mg..once a day
sanctura 20mgs. 2 a day
allegra 100mg. when needed for allergies
rhinocourt nasal spray when needed
levoxyl 75 mg.. once a day hypothyroid
07-19-2007, 10:23 AM
Hi! I have not had any weight loss since I got my first symptom of IC (I actually gained 20 pounds in the last 9 months). I don't have andy side effects of Elmiron. I have to open the capsule for a swallowing reason, but I did try taking the whole thing a couple of days. Boy did that give me gas, abdominal cramping, and diarrhea. I open the capsule, put the powder on my tongue and wash it down with 4-6 ounces of water. Some mix the powder with water, but the way I do it is faster (especially when I am in the car for my afternoon dose).
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