View Full Version : elmiron: success or failure?
10-20-2004, 09:14 AM
i know this has been asked before, but i thought i'd start a new thread.
experiences with elmiron?
did it work for you?
Elmiron has definitely been a godsend for me --- in combination with other medications. I was already on Elavil, Vistaril and Detrol LA when the Elmiron was added.
I began to notice a difference at 2 months and then it kept getting better. After a year or so on Elmiron I was gradually able to add back in all the foods I was not able to eat for so long. I feel normal most of the time now.
I had no side effects other than some nausea the first few days after starting the med.
I do know that I need the other meds to feel good. I have gone off of Elavil for a few weeks recently and my bladder was fine --- but my neck pain returned so I went back on it. I have tried to go off of Detrol LA a number of times I always flare, which is interesting b/c that was the first med I tried and it didn't seem to make a huge difference by itself.
Elmiron does not work for everyone, but for many of us it has given back our lives. :)
10-20-2004, 10:26 AM
I believe elmiron in combination with other drugs is working for me.
Side effects include 2 BM movements a day (I used to go less often) and really soft stool. I occasionally get gassy. Although, lately it seems like these side effects aren't as bad as they used to be.
I'm one of those that elmiron works for and I can deal with the side effects.
10-20-2004, 10:29 AM
I was on Elmiron for almost a year and it really did help me, however at about the 8th month I started having diarrhea and upset stomach of and on...Then it got really bad and saw my Dr and he was quite sure it was the Elmiron... I cut back to two a day and there was no improvement so I had to stop it completely.. I have been off it about month and only now things are begining to settle down in bowels...So far my bladder is still doing well and only get a bit of short term pain and frequency...
If it had not been for the "stomach-bowel problems" I would have stayed on Elmiron a lot longer..
10-20-2004, 10:59 AM
I have been on Elmiron for about 3 weeks and I'm doing great. I believe Elmiron and bladder instillation is working very well for me. They are making me live a little more normal than I use too. Chelsey
10-21-2004, 07:23 AM
I was on Elmiron for 3 years, and in combination with a strict IC diet, I am doing very well right now! Hope it works for you too!
10-21-2004, 08:07 AM
Those of you who are on elmiron, is it oral or instills, or both? I have been on elmiron, in combination with elavil, allergy meds and anti-inflamatory, for 2 months now. No difference yet and I wonder if those of you have had instills right from the start improved more quickly. I'm ready to suggest it to my uro but need some "evidence". Comments please. Linda
10-21-2004, 08:40 AM
Elmiron has been a miracle for me..
10-21-2004, 11:38 AM
I've been on oral Elmiron (standard dosage) along with Detrol LA for 18 mos. I started feeling a little better at about the 3 month mark. I continued to improve until I hit about 9 months then kind of went downhill a little (can't figure out why). A month ago I added Elavil to the mix and am back feeling better but not quite "normal" yet and still must stick to the diet. I suspect I need to increase the Elavil just a little. I see my uro in 3 wks and think he might just do that. Still trying to find just the exact combo and dosage that works for me, but I am getting there! Lord, give me patience and please give it to me right now! :)
10-21-2004, 02:05 PM
I have been on Elmiron for almost two months now and it is going good. We tried to do the elmiron instills because uro said it would be faster recovert time but my bladder would go into many spasms and it was just to painful for me. In a few more months if I am still having the pain and frequency then we will try the instills again.
10-21-2004, 02:36 PM
I've been taking Elmiron for eight months now. I also began my IC diet at the same time. Almost immediately I felt so much better and I attributed much of it to the drug. The few times (Well, maybe not so few!,..darn near every six weeks!) that I've indulged in something I shouldn't have eaten, I go right back to the same symptoms I had before diagnosis & Elmiron. Which makes me wonder if the medication is doing anything at all, because IC sure seems to be diet related for me.
I have read how some have been able to return to eating problem foods after using Elmiron, and hope someday that will be me. Seems the only way I can gauge whether it's been effective is to quit taking it. For now, I plan on giving it a full twelve months, then talk to my Uro about going off it for a time while continuing to watch my diet.
10-22-2004, 12:20 AM
I was on Elmiron for 6 weeks. I had to stop taking it because of an allergic reaction to it. My tongue, mouth throat, chest and stomache felt like I had poured scalding hot liquid or something in. After showing my purpleish-red swollen tonuge to the doctor he told me to stop taking it and start taking benadryl for a few days to stop the reaction.
Was it working for me? It was making everything much worse.
10-22-2004, 10:17 AM
[B]I have been taking Elmiron (oral) for a year and a half now along with Detrol LA twice a day and Ultram. I also follow the IC diet religiously and have been in a remission now for a few months and feel great! I really do beleive it has helped in the repair of my bladder. I still get a few flare ups if I eat something that is not IC friendly, but then take Prelief and that helps alot! I wish all of you my best and my hopes and prayers are with you all. I hope they find a reason and a cure for IC in the near future!
10-23-2004, 12:44 AM
I have taken Elmiron for over a year and I also take Paxil. The combination seems to be working. Like some of the others, I go potty a couple of times a day but I can deal with that. My symptoms are gone for the most part. I will get a twinge here and there if I eat or mainly drink a no-no. I still will not touch alcohol with a ten foot pole. I have gained a few pounds but I contribute that to the Paxil. I am fighting it though by cutting down on sugar and walking. I don't know whether to continue taking Elmiron since my symptoms have subsided. I don't want to go off of it and have them return. I'll keep taking it as long as my uro will prescribe I guess.
10-23-2004, 03:31 AM
I have been on Elmiron for 4 months and so far it has not helped. I have had 4 DSMO instills and am on Neurontin (I had a bad reaction to Elavil and other antidepressants.
Is there a chance the Elmiron will still work if it has not worked in 4 months?
10-23-2004, 05:20 AM
Yes, Elmiron can take up to 6 months to work... ask your uro about Elmiron instills..
10-25-2004, 07:38 AM
Betsy- be careful taking Neurontin. I took that for neurapathy in my hands and feet. It made me feel very strange and didn't help so I went off of it. THen I saw a TV ad for people on Neurontin. They say it makes people depressed and has caused alot of suicides.(and it's supposed to be an antidepressant?) Very scarey stuff! It does take Elmiron at least 6 months to tell if it is working. I know it did for me.
Has anyone found that Elmiron makes you hungry or makes it easier to gain weight? I'm curious to know. I did so well on a low carb diet until I started taking Elmiron and gained alot back. :hmm:
Cricket-I wouldnt go off of Elmiron even if your in remission. I know I'm not going to! I really attribute my remission from Elmiron. I think it helped to repair the bladder lining.
10-25-2004, 08:03 AM
I just completed my 4th month on Elimiron. Sometimes I thought it was helping, sometimes not. I don't have freguency, though I probably go a little more than normal (every 90 minutes). instead of every two to three hours. I get up at night on occasion. But my urethral burning is still bad and it worsens hours to days after having sex. I'm thinking of calling my urologist and asking for other medication, but I'm not sure what. Since I don't have a frequency problem, some medication might not be appropriate for me. Though I could ask to be put back on the Amitriptyline.
While I'm at it, I might as well ask what over the counter pain reliever might be helpful to me before having sex, to help with the burning urethral pain the follows? (you can sort of tell I had a rough weekend, lol)
Ihave been on Ellmiron for about 2 years now, I have added DMSO - once a month now, I follow the diet carefully and feel ok. I still have flare ups and find it hard to walk for any length of time, because of the pressure in the bladder. Elmiron has improved my pain, but, I am not sure of the DMSO - One month Im sold on it and I feel great and the next month the world falls apart HA! guess we have to be thankfull for any improvement we get. It isnt perfect, but I am improved, thankfully! Wish you good health!
05-06-2006, 06:12 PM
I am interested in knowing if Elmiron has worked for anyone out there who had a cysto/hydrodistension that did not show any ulcers or glommerations, just some inflammation. That's what mine showed and my doctor wrote that the diagnosis was "urethral syndrome/possible IC" and offered me an Rx for Elmiron. I haven't taken it yet but I'm curious if it works just as well for people who don't have the "classic IC" bladder. Thanks
05-06-2006, 11:42 PM
I've been on Elmiron for five months, and I'm not exactly certain it's working or not. It's hard to tell with all the other meds I'm taking. Also...just wanted to add my two cents regarding Elmiron instills. I've had three and it really didn't do much of anything. The heparin/lidocaine/sodium bicarb had a greater effect. Elmiron has not been FDA approved for instillations, some uros are doing it anyway, so there is no research data on whether it works or not, is better than taking it orally etc. Like all the meds we're offered -- some work for some and not others.
05-07-2006, 01:37 AM
I was talking Elmiron almost a year before I noticed much improvement. The Elmiron and Vistaril have definetly helped with my nocturia. I used to have daily pain, but now it's calmed down, but I do still have pain if I flare up (like today!!). I wouldn't say it was my miracle drug or anything, but I wouldn't stop it either.
05-07-2006, 02:36 AM
I took Elmiron for a couple of years... I quit taking it to see if it made a difference, and it did not. I did stop getting headaches after I stopped taking it.
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