Newby asks.. Does Elmiron by mouth work???

[Babsgardens]

:woohoo: I am frustrated and confused at all of the info I've gathered over the last several weeks. I was diagnosed two months ago and have had 12 Elmiron instilations. None by mouth. Does it work??? I need a "show of hands". Also does anyone take Neurontin for IC? What meds have you taken that works.. what meds have you taken that didn't work. I appreciate all of you more than you know. Wait.. maybe you DO know since we share the same dreaded disease! LOL Please feel free to email me directly. Be sure to put IC in the subject so I won't delete you. Thanks for being there.

Your IC sister, Barbara (Babsgardens)

[Babsgardens]

.... also, have any of you tried alternative methods.. like chondrotin sulfate, Marshmallow root, or Quercetin? Barbara (Babsgardens) :dizzy:

[XoChelsey03Xo]

I am taking Elmiron by the mouth and it is working great. I'm also doing bladder instillations but it isn't with Elmiron. Both have taken my pain away. If I were you I'd try the pills Elmiron. Chelsey

[Katrina]

I elmiron orally and it helped me a lot....usually the installations are because it takes so long to work....it took me about 4 months....but the huge difference was worth the wait. I also take neurontin and love the difference it makes. I think it works very well on pain.
:welcome: to the ICN!
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

For me Heparin installtions also have worked...as have the alternatives in the ICN store. Also I have liked catnip when I flare to help me sleep. The diet and Prelief are also huge difference!
http://www.remedyfind.com/hc-Interstitial-Cystitis.asp This link can give you some treatments for IC and how others feel about them. It is new and in need of more people to participate but may be helpful non the less.

((((hugs))))Good luck on finding the best treatment for you!

[Imustpee]

I had 27 instills between July 2nd - Sept 25th..and I am well into my 4th month of 4 Elmirons a day..It is a miracle! Between the 4 Elmirons and 1 10mg Nortriptlyne at night I am doing GREAT! I fell asleep last night at 8:00 and woke up at 6:15 this morning..I was up once at 12:30 to pee...ONCE!!! WOOOOHOOOOO

[work it]

I have been taking elmiron for 2 months now by mouth. It seems to be helping, I take 3 100mg twice a day for a total of 600mg. I am also take elivil at night and that has helped also. I take the prosed when needed for burning and frequency.

[mary124]

I take Elmiron. It helps me, in fact when I skip a few doses, I can tell. It is hard to remember to take that mid-afternoon one, even after all the years that I been on it.

[ICNDonna]

The FDA approved Elmiron to be taken by mouth. Recently some physicians have been emptying the capsules and instilling it directly into the bladder. It may be a while before we know the results of this route.

Hugs,
Donna

[Alexa]

Taking Elmiron orally worked for me! :)

Hope you find relief from your symptoms soon!

:)

[Imustpee]

Donna, that's exactly what my uro did with me..Elmiron in the bladder...was a miracle!

[Sarojini]

I've been taking Elmiron since March and think it is working quite well especially in terms of urgency and frequency. Both are down for me -- I still pee about 15 times a day (more if I flare) but that's better than the 30 times I was going!! However, I'm still working on my pain aspects, but I'm hoping in time that will reduce as well. :)

[greghh]

I'm glad you asked that question. I learned a lot too. I've been taking Elmiron(100mg tid.), Elavil(50mg/day), Vistaril(25mg/day) and Algonot plus for about 2.5months. I feel better, but not great. I'm not convinced Elmiron is working, but I'm pretty sure the Elavil started helping after just a few days.

Does anyone know the benefits of Neurontin vs. Elavil? Elavil is helping but if I keep eating, I'm going to have to buy new clothes.

[lovethesouth]

I found that the pill - taken by mouth - worked perfectly. It takes awhile for it to kick in. I have been pain free for some time now. And have taken myself off of the Elmiron. My reduced dose was 100 mg at one a day.

[VickiB]

I've been taking Elmiron orally for 14 months along with amitriptyline & hydroxyzine. At around eight months it occurred to me I hadn't had a real bad day for quite some time. Now, I'm close to being pain free. -Unless I stray from the diet.

Vicki

[lovethesouth]

Good for you and glad to hear that you are doing so well. Thanks for the other tips on meds as I may need that info later. Hooray!!! for those of us who are now in remission or have conquered and indured the hurdle.

[poetgirl]

I have been on Elmiron for 2 years (orally) and yep, doing much much better. I was even able to reduce the dosage from 400 mg/day to 200 mg/day because my condition had improved.

[lovethesouth]

Glad to hear that things are working out for you. :woohoo:

[pattig89]

To the person that takes the Elmiron Instillations did you do that once a week
or 3x a week for six weeks like my Dr. suggested and is that all you have to
do to make it work for awhile or do you have to continue these instillations for a long
time?? I am confused on weather I want to start the med's orally or with instillations.
My experience with instialltions has worked in the past but I am not crazy about
going into the dr.'s office 3x a week for six weeks..but if the outcome is better than
orally I am all for it..Please get back to me..
Thanks,
Patti g.

[pattig89]

To the person that takes the Elmiron Instillations did you do that once a week
or 3x a week for six weeks like my Dr. suggested and is that all you have to
do to make it work for awhile or do you have to continue these instillations for a long
time?? I am confused on weather I want to start the med's orally or with instillations.
My experience with instialltions has worked in the past but I am not crazy about
going into the dr.'s office 3x a week for six weeks..but if the outcome is better than
orally I am all for it..Please get back to me..
Thanks,
Patti g.

[mary124]

I went at first once a week for 6 weeks, then once a month for the longest time, but when they came out with elmiron (in 1997- I was dx with this in 1992) and started with the combination of taking the oral medication. Then when the DMSO stopped working, so now just elmiron, along with the hydros every 6-8 months.

[mdj]

I got confirmed dx in Oct. 04. I had been going to my uro 4 months before he did the cysto. We had been doing the direct instlations with elmiron and lidocane. I went 1x a week and then 3x a week. Never did work. BUT, I have a really bad case... I know that these treatments are very successful for a lot of people, just didn't do it for me. Made things worse. ( I am allergic to sulfa)

Good luck!

mdj :)

[rosesitty]

lovethesouth - You were taking Elmiron by mouth and now that you're better you went off the Elmiron? How long have you been off and do you see any backsliding?
Imustpee-did you have 27 Elmiron instillations and take it orally as well? How often were your instills per week? How bad was your IC to begin with? Thanks!