View Full Version : Elmiron - How Long Til I Feel Better
03-22-2004, 07:22 AM
I just wondered if there were any long-time users of Elmiron and how long before you see any sign of relief from using it. I'm just starting my 2nd month of Elmiron 100mg 3x per day and haven't seen any change in frequency or pain. I think I'm in a major flare again so maybe it's too soon to see any effects yet. The thing that discourages me from continuing the med is that there's only a 38% success rate to the drug and it takes sooooooooo long to help and it doesn't always help everyone. It's encouraging and discouraging all at the same time.
How long do I have to wait? As you can see, patience is not one of my better qualities. :)
03-22-2004, 07:41 AM
I was the fast one...it only took me 3 and half months to see a small change. Elmiron after 6 months had helped me so much I no longer had pain. Unfortunatly I never got symptom free yet.
I have heard it can take over a year for it to start working......I suspect if we all had the patience to give it over a year...or even 2 years the percentage of people helped by it would go way up....but we don't have the patience...and who would blame us??
Anyway...I heard of someone who first got help from Elmiron after 2 years.....that is waiting patiently I tell ya.
Good luck I hope Elmiron helps you...and helps you fast!!!:)
It took me about 9 months to see an improvement. It was so gradual that it was almost unnoticeable. I just started realizing my "good" days were outnumbering my "bad" days.
I realized the sudden urges I had been getting had all but stopped, and my frequency on most days had gone from an average of 13 times to about 8 or 9 times. But I didn't just wake up one morning feeling normal. And I generally watch my diet like a hawk.
I was still having a significant problem with frequency in the morning, which my doctor thinks is PFD.
Hang in there with the Elmiron; it's worth it.
I began to notice a change at 2 months, but nothing big until 6 months. About a year there was a huge difference and it just keeps getting better and better. Hang in there - it can be soooo hard to wait, I know. :)
03-22-2004, 03:11 PM
Hi, I felt some pain improvement after two months but I was also taking neurontin for pain relief. This combo helped me feel even better. The frequency improved when I took Ditropan XL. I think each year gets better with Elmiron as i am on the same regimen of drugs stated and feel great. Adding Pamelor ( nortriptiline) to my regimen was just enough of a boost to throw me into a complete remission. I tried going off Elmiton. I was fine for about 4 days and then I could feel the bladder heating up. Early in my diagnosis I took oxycontin in 10 mg doses. No need for that anymore. The nortriptiline was better than oxycontin for my pain which is mainly uretheral. I also have vulvodynia . (That comes and goes. ) Hang in. You won't believe the difference if it works for you. As for the statistics on Elmiron, I have to wonder if they really did extended studies over a period of years or if they judged the drug by early relief. Every year is better and I can eat so many foods that were out! Like fruit for one! But I only drink water and find anything else can be a problem. I am in year 4 of the disease. Don't give up! :angel: Carolyn
03-22-2004, 04:16 PM
i was on elimron for two years and i couldnt never tell any diff but when my doctor looked at my bladder for the second time he did for the better but yet my hunners had gotten larger and i had another one on my left side so a total of three hunners on my bladder i have asked for the lazer surgery to have them removed but he doesnt want to cause any more damage to my bladder since i do have chornic ic. .........sorry i got off the subject here i'm bad at that.
anyway i was told it takes six mths to a year for people to be able to tell any diffs.
I stopped elimron about six mths ago and do the dmso treatments at home heparin and marcaine.
doctor do use dmso not always heparin to help the elimron get into your system quicker.
I have heard some great success story on elimron. I pray this helps you also. the hard part about ic is waiting. in the mean time if your not already takeing pain meds you might want to ask your doctor for something to help you threw the flares until the elimron gets into your system well.
wishing you tons of best wishes and sending you prayers
as auntiedebbief always said bless her soul "there is always hope" boy isnt that true.
04-17-2004, 05:44 PM
I am currently trying Elmiron, this is month 5 so I am hoping to find relief with it. I am usure if it is working yet. Sometimes I think yes then other times I think no.
I often find myself asking others around me if I was just in the washroom...I am unable to tell a lot of the time due to the pain and urgency to go again. So this is scary to me!
How long can you take the drug Elmiron for? Is there a specific timeframe on it?
04-18-2004, 05:49 AM
It's really individual...some people respond right away to Elmiron, while others have to wait a bit. I know it's frustrating! After about 2 months I noticed a little bit of a difference in my symptoms, but after about 3-4 months there was a much more noticeable difference. I was on Elmiron for a total of 3 years, and while it didn't "cure" me (unfortunately there is no cure YET), it certainly helped me very very much....my good days increased and the number of bad days decreased. Elmiron helped all of my symptoms, and I didn't have any side effects.
I hope you get some relief soon!
04-24-2004, 11:00 AM
It took me six months.
04-24-2004, 08:38 PM
I am into my second month of Elmiron. I feel much, much better and some days I feel like my old self again. But in the last two weeks I seem to be losing a lot of hair. Agh!
I need to call my uro on Monday to follow-up on recent blood work. He says that Elmiron can cause problems with the liver. Anyone have any info on that one?
I hate the thought of taking this stuff forever, but I am hoping one day we will have a cure.
Hang in there. I hope you feel better.
04-28-2004, 12:07 PM
I've read that Elmiron can cause liver damage, but it's not common. To be safe, I get my liver checked (through a blood test) every 6 months. I read somewhere that it's recommended to have the testing done every 6 months, but can't remember where I read it.
Hope this helps! Elmiron has helped me a lot, so to me it's worth it.
04-28-2004, 12:34 PM
It took me about 3-4 months before I really started having a lot of good days. I've been on Elmiron for a year now and I feel normal most days. Of course I am taking it along with Detrol LA and Elavil so I'm sure all 3 have contributed to my improvement, but in any case, I'm doing much better and I would have to say Elmiron has helped. You may not notice dramatic improvement -- most likely you'll start noticing your flares may not be as frequent or as awful, if it begins to work for you.
04-28-2004, 03:26 PM
Hi back 1tuffcookie:
Thanks for the info. My recent blood work came back fine. Yay, me. Nice to get some good news for a change.
Now, I need to schedule a cysto with my new uro. I was awake for the first one with the Doc-who-shall-remain-nameless. He wasted a lot of my time and money and misdiagnosed me.
This time I will be put into la-la land and he will take a closer look. I was out of the OR in less than 20 minutes for the first one. It is painfully (no pun here) obvious that he missed something. I have a hot seam or wrinkle on the left side. I feel it. A Hunner's ulcer? We shall see. I also want him to do a bladder biopsy while he is there. Might as well.
Best regards to all. Feel better.
04-28-2004, 05:24 PM
I was Elmiron for about 13 months with no noticeable improvement. I did lose some hair, worried a lot about the liver levels. It does have a very small effectiveness rate. If you can stand it give a chance, but if your in dire pain, I wouldn't hesitate to ask for something else. Good luck
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