Hi all-newly diagnosed and saw my Urologist on the 31st to start on new treatments. Starting Elmiron is one of them.....I find it a little difficult to follow the dosing schedule of 3 times a day on an empty stomach (1 hour before or 2 hours after meals). I take many other medications, and I take a bunch in the morning, a bunch at dinner, and sleeping med at bedtime. Now I have to get up earlier to take my Elmiron so I have time before I eat. My other am meds I take with food. Then I am taking one to work. I usually eat a small lunch with healthy snacks, but trying to keep an empty stomach is kind of hard. I feel trapped by needing to take on an empty stomach. How strict are others who take this med?
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Timing of Elmiron doses?
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Timing of Elmiron doses?
My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
Current treatments: bladder instillations
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I try to take the Elmiron on an empty stomach but there are many times when it's time for my dose and I had eaten something but I just go ahead and take it anyway. Being on so many pills there are times when you forget or don't have time etc. to take it on empty stomach. -
I also used to feel trapped by the strict schedule one supposedly has to adhere to when taking Elmiron. If I had to look back on the experience, I would say that one of the big lessons I took from it was that many of the joys of what we call "freedom" are the little things, like choosing when we want to have our snacks. Anyway, after sticking to the strict schedule for months, I decided to loosen up about it. I never experienced a decrease in effectiveness or an increase in side effects because of this. After being on a cocktail of Elmiron, Urocit-k, Hydroxyzine, and continous birth control, I was able to get to a point where I experience only low-level symptoms. I actually stopped both Elmiron and Urocit-k October of last year, and am still doing good.
Back to your question... I have heard that the reason patients who are taking Elmiron are advised to stick to the strict dosing schedule is because it corresponds with the schedule that was used in studies. There are several patients on here who don't follow the schedule, and still have good results. I've also heard of a few people here specifically taking it with food to deal with the early upset stomach/nausea side effect. Hopefully, there will be more research on this drug to find if sticking to the dosing schedule is really neccesary. Right now, there don't seem to be any solid answers as to whether or not it is imperative that you follow the schedule, so all I can really offer is anecdotal evidence from myself and other ICers.
P.S. To clarify, a lot of the controversy is based on the idea that Elmiron will bind food in the stomach, and thus, become ineffetive. This is a controversial issue among urologists, especially since it has recently been found that only a very small percentage of Elmiron is even absorbed by the body at all. Some urologists will say that it doesn't matter whether or not you take it with food, while others will insist that you take it on an empty stomach.
Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
Current IC treatments: menstrual suppression
Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
As-needed treatments for other conditions: Klonopin, Ambien
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Thanks for responding. Perhaps I shouldn't be so worried. I guess I am just feeling choked by the amount of meds I take now...even before this, I was already taking a lot of meds for several other problems (Bipolar, Rheumatoid Arthritis, Fibromyalgia, GERD, and allergies. Even before starting new meds I'd already begun feeling that "I'm tired of pills" feeling. When I was just on meds for bipolar, I was cool with it...it took me a long time to find the right combo, and even though I had to take a combination of drugs, it helped so much I was grateful. It's also taken a combination of drugs to get my RA under control.......and yes I'm grateful. If the new meds can help with the IC I am sure I'll be overjoyed too, having suffered for years before a diagnosis
I've not had any side effects at all so far (knock on wood) so at least there's that. I just need to find a balance between med doses and eating, and hopefully not get so fixated that I gain weight over it by over-eating at meal time to make up for the "several small meals" I prefer to have.
I appreciate the support!My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
Current treatments: bladder instillations
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I am on Elmiron and have been since 1997 and still have problems taking it on an empty stomach!! My doctor said it really didn't matter much. In the morning, though, I usually have to get up around 5:00 to go to the bathroom (this is an hour before I actually get up so i take my first dose of Elmiron at this time). At lunch, I switch my lunch hour to an earlier time (11:00a.m) this way I can take it at 1:30 or so. Sometimes it doesn't work out as I get the "munchies" or at work we are having an all day snack deal so if this happens I usually take it while I'm eating. Then at night, I take it after 9:00pm.. Like I said, its usually by afternoon dose that i either miss or take differently even after all these years!! But I don't think it really matters - much, as my doctor told me, he said "you're doing good by getting 2 doses a day in you with as much medication as you take!"Comment
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Timing of Elmiron Doses
Hi,
I take Elmiron 200 mg twice a day. I take the first dose right away when I wake up and then wait an hour to eat breakfast. I shower and get dressed before breakfast. I make sure any afternoon snacks are done with by 4 pm. I take the second dose around six pm and eat an hour or more later. If I want to eat dinner earlier, I take the 2nd dose of Elmiron two hours after I finished eating.
KathyComment
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When I prescribed the elmiron, my doc told me to actually take it with a small snack to avoid stomach upset since I have stomach issues already. Even the pharmacist said it would be fine to take it with a small snack( maybe a couple crackers or something).
I could not continue the elmiron though due to bad side effects.
JenComment
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So far, if I take it on my days off it's not been bad, cuz I can easily take it when I get up and wait an hour to eat. Work days are tougher because between getting up and eating it's not an hour. What I ended up doing is bringing the pill and a water bottle full of ice water to bed at night and when my alarm first goes off, to take it then...I usually hit the snooze a couple times. I have to get up slowly like that because I am always so tired, plus so stiff related to RA that it takes me a while to get out of the bed. The last dose of the day isn't bad either, because I can take it at bedtime a couple hours after bed...it's the mid-day dose that is hard. Maybe I won't get so uptight about a small snack.My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
Current treatments: bladder instillations
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The NP at the gyn's office who did my PST and prescribed me the Elmiron said that many patients take the first dose in the morning on an empty stomach and then take the last 2 doses at night together after dinner time and there didn't seem to be a change in how it worked. I tried to take it during the day but I had the same problem with having a snack and I would forget to take it. I don't even bother anymore. I just take 2 at night when it's been about 2 hours since we ate dinner if it's been less time I really don't stress about it. It makes it easier and since I take other meds at night at this time it's easier for me to remember.
Maybe ask your dr if it is okay to take it this way?Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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I would suggest you give yourself a few weeks to see if you can adjust your schedule to fit the dosages in. If not, check with your doctor because dosages can be changed as other's have suggested. I take all 3 dosages at night because I can hardly get out of bed in the morning if I don't. Initially, it is difficult to schedule the Elmiron with your other meds, but before you know it you will be a pro. It will get easier.
~~Heidi~~
My issues:
Adenomyosis -Diagnosed 2010
Fibromyalgia - Diagnosed 2009
IBS - Diagnosed 2007
IC - Diagnosed 2003
Endo - Diagnosed 1998
Cystic Acne
Migraines
My meds:
Elmiron orally 100 mg 2x per day
Effexor 75mg 1x perday
Welburtin 150 mg 1x per day
Maxalt (as needed for migraines)
birth control pills
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sphinx,
I have trouble with my afternoon dose as well. My morning one, I wake up and take it immediately. I shower, get ready for class, then grab something to eat about 45-60 minutes after I took the first dose. In the afternoon, I try to get one in an hour before I eat lunch. If I don't and eat instead, I don't take it. My urologist said it's not worth taking if I just ate. Now, due to some bruising, she said to stop my afternoon dose all together. That's frees me up!
Good luck! Just try to set a timer, 1 hour before your lunch break and take it then. Sorry I can't be of more help![SIZE="1"][B]Be well, Alyssa :hi:[/B]
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I am very new and was just actually prescribed Elmiron today. My doctor told me the 3x a day on an empty stomach is difficult so she told me to take it twice a day. ONe in the morning when I wake up and 1 at night before bed. Like I said, I am brand new and just got the script 2 hours ago. I have to get it filled after work. I just thought i would mention how it is being prescribed to me. I am also on Urelle and have been able to decrease that from 3x a day to 1 a day ONLY BECAUSE I AM STICKING STRICTLY TO THE IC DIET. I have to say that out loud. I believe that is the main reason i am improving.Diagnosed May 2007
Currently Taking:
Urelle as needed for urgency/burning
Elmiron 100 mg 2x a day
Omacor 1 gm. 1x a day (to lower my Triglycerides)
Lipitor 10 mg.
almost forgot.....I'ming for a miracle all day long ......
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My urogyn just told me yesterday that it's OK to take it twice a day--2 in the morning and 1 at night since that afternoon dose is so difficult to remember or get around to.Comment
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2 twice a day
My dr. has me take 2 in the morning and 2 at night. Not sure why I'm taking 400mg but he thought it would be easier than the three times per day. I've only taken it for 2 months so I don't know if it's working yet, but that's my routine anyway.Feel Free to Private Message me or E-mail me at
[email protected]
Altough I have had IC symptoms in the past my main issue is urinary retention - I am DESPERATE for an answer. I have to self-cath every time I go to the bathroom and have been since 2000. I feel helpless. Any advice would be appreciated.
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Interstim Trial on 12/21/07 - Didn't work so no InterStim for me
Tried:
Worked - Ditropan 15mg (and helps you sleep!) Off it now though
Didn't Work - Vesicare, Enablex, Detrol
Macrobid 50mg/day for to ward off infections
Self-Cath (can't go on my own!) for retention
Birth Control - Nothing- Quit Yasmin (It's a Diuretic!)
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Well I think I've decided to phone my Uro this coming week about alternative dosing schedules. This past week I've screwed up a couple times on days I've worked, so judging by what you've all said, perhaps I can take a slightly different schedule like twice daily or something.My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
Current treatments: bladder instillations
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