Who has been helped by Elmiron?

[leelee88]

I was just curious who all here on the ICN has been helped by oral Elmiron or the instills?

[meme]

ME! ME! ME! I have done so well on oral Elmiron and Elavil combo. I didn't get any of the icky side effects either. I've been off the Elmiron for a month now and have been doing pretty good. I've been off Elavil for about a week and have had a few small flares, but nothing compared to what it was.

[GriffsMommy]

I've been on Elmiron since the start of Nov and I have to say I can't really see any difference from it. I saw a big improvment when I started the Elavil a couple of weeks ago but nothing from the Elmiron. I'm wondering if it's one of those things where I don't notice the difference but if I stopped it I would be much worse. Uro wants me to stay on it a little bit longer. Since it costs me such a fortune I think I'm going to ask him if I can try to go off of it when I see him in July. If I don't get worse then I'll stay off of it, I hate to spend all that money on a med I don't think is working.

[leelee88]

Why I am asking is because I think its my next step..I am not having much bladder pain, but I am aware its there, but still sometimes get that got to go feeling even though I just went, Does Elmiron help with that?

[ABliske]

I used to have that feeling of having to go a lot. I have been on Elmiron since last August and don't have that feeling anymore much! I do still have a lot of bladder pain though. I can't say for sure if it was the Elmiron that helped with the urgency. I am also taking Effexor, Uricit-K, Cysta-Q (just started that), and MS Contin. I hope you get more responses. I am sort of curious if I'd feel different going off the Elmiron, but do not want to try that yet. I think it can take a long, long time to work.
I like to snack a lot and since you're supposed to take it on an empty stomach I've skipped a lot of doses. I think I want to stay on it at least 2 years to see if it will help anymore with my pain.

[traceann]

Hey girlie, I have to say that Elmiron in combo with my other meds really helped me out a lot. I now take Cystoprotek to keep up the good work that the Elmiron did, lol. I did however have to do the dump-the-med-into-a-bit-of-water thing due to horrid heartburn I was having. But once I started doing that, no more problems with hearburn!

[meme]

Frequency and urgency were my main symptoms, along with a burning/uncomfortable feeling in my urethra right after I'd void that would make me feel like I had to go again.

[Katrina]

I raise my hand as one lucky enough to be greatly helped by Elmiron...alone it wouldn't have been enough but the difference it made was huge.

I do think that a bladder coat of some kind is a big part of treatment so if you don't respond to Elmiron and aren't interested in rescue instillations or they didn't work for you....I would look into the alternatives like • Desert Harvest Aloe Vera
• Licorice Root (Soothing and coating)
• Quercetin (may reduce the effectiveness of some forms of estrogen)
• Glucosamine Sulfate
• Mullein (protecting)
• Slippery Elm (coating, don’t take near Elmiron)
I do think your doctor should know what your considering in alternatives but

[leelee88]

Meme, Thats the exact feeling I have..
I am going to GYN tomorrow going to ask her about putting me on it..Can you take it with other things like Cystoprotek or CystaQ?

[petrie86]

I had the same symptoms... I stated elavil and elmiron in oct 06. I can see an improvement in my sypmtoms. I can work again, that says alot. I do take days off but not for a flare... for uti's b/c of the peeing ever 2 mins. Elmiron has helped me alot!!! I would deffinitly ask ur dr or gyn about starting it. What do you have to loose? I didn't loose any hair on Elmiron either. (knock on wood)

Rachel

[Roxie2007]

I can see a big difference in my IC symptoms! I have been on Elmiron since July 06 and Elavil since Dec. 06. Most of my days are pretty much pain free unless I eat something I shouldn't. Roxie

[Lynn15]

I was on elmiron, among other meds, for a year and a half. i have to say that i noticed no real improvement with the elmiron. i decided to stop taking it because it contributed to flare ups of my irritable bowel. i've found heparin instills to be helpful and i began taking glucosamine sulfate a few months ago and i think i am just starting to notice a difference. hope elmiron works for you. i think it is definitely worth it to try it...as you can see it helps many. just make sure you give it at least 6 months, as it tends to take a while to take effect.

[vm]

It has helped me immensely over the last almost 6 years - in combination with my other meds. It is the big one that helps me, the others help with the smaller symptoms. I have zero side effects from it and it continues to help me. It's been a godsend.

If you click on the link for my story below you can see what my symptoms were like. I don't have symptoms anymore, but it tells what they used to be like.

[leelee88]

Thanks Kim..

[traceann]

Hey leelee, if you are interested in the Cystoprotek, you should check out the Algonot site, there's lots of good information there, it helped me out in making my decision etc. And you can take it with any of your meds, it's like the in-stores OsteoBiflex stuff, same types of ingredients etc, but a much better formulation for use by the body and formulated just for bladders etc. Just go to www.algonot.com, there's boatloads of information on that supplement!!!! I also know my knees creak a lot less now a days, lmao!!