feeling much better

[just1ofamillion]

I was diagnosed with IC about 5 months ago, and I've been feeling pretty good for the past 2. I still have another month's worth of Elmiron to take, but it has worked wonders for me. I was really strict on the diet at first because the smallest thing would make me flare, but now I eat a little chocolate and can drink decaff coffee without much problem. Onions are still a big problem for me, and I haven't tried alcohol yet but I feel soooo much better on a day to day basis that it's amazing. I suggest Elmiron to anyone with this disease. The only con is that it was hard for me to remember to take it 3 times a day every day for 6 months. I usually only remembered 2 doses. I would probably feel even better if I had managed the three doses.

Endometriosis
IC
Pelvic congestion syndrome
IBS

[VickiB]

That's great! Hopefully it continues to get better & better for you!

Vicki

[kadi]

Hi there,
I'm happy you're feeling so much better! You do know, by the way, that Elmiron is usually taken for six months to see if it will work & if it does, then should be continued indefinitely... It's not a medicine to be taken for six months & then stop. Most IC patients find their symptoms come back when they stop taking it. That said, I hope you are feeling better and better, and I'm very happy the Elmiron is working for you:) Thank you for posting your success, I'm sure it will encourage others!

[just1ofamillion]

Well my doctor told me that I wouldn't be on it for a long time, just six months but I guess we'll see when I go back to him for a check up.

[VickiB]

Kadi's right, for most it seems taking Elmiron is ongoing in order to maintain their well being.

I no longer take this med. I think it helped me to get to a point where my bladder was somewhat healed and I've been able to stay there by being careful not to irritate it further through diet & lifestyle changes. Perhaps this is what your doctor has envisioned for you. Unfortunately, this doesn't work for everyone and in my case, I've found it is easy to slip back to the :bonk::help::cussing: again.

Vicki

[Jereme]

Lots of people take Elmiron twice per day. Two pills twice per day is common. If you have trouble remembering to take it three times per day perhaps you could take one in the morning and two at night. My doctor tells me before bed is the best time to take Elmiron since it has the most time to work at night. That is, unless nocturia is a problem.

[tracieg]

I am about to start taking elmiron but I am worried about some of my hair falling out.. Has this happened to anyone?

[Goldfinch]

There are plenty of threads in the Elmiron topic about hair loss. It is not a common side-effect, and most of us who take Elmiron don't have a problem with it. If you are worried, you can monitor the amount of hair that comes off onto your brush everyday, or simply check the shower drain every time you shower, which is what I do. I've been taking it for a year with no major issues, and much improvement.

To the original poster: If 200 mg per day works for you, that's great. If you find that after time your symptoms are returning, then you might benefit from taking 300mg per day. It sounds like your doc want to re-evaluate after six months, which makes sense, although there are those for whom Elmiron can take up to a year to become effective. As others have noted, there is no cure for IC, and Elmiron is generally considered a long-term commitment if it works for you. Some here find that going on a lower dose works to control symptoms once they are under control, but it seems to be common experience that stopping Elmiron means a return of symptoms.

On the bright side, there is no indication that Elmiron is in any way dangerous or risky to your health when taken for many years.

[TSolares]

I also have a hard time remembering to take my Elmiron 3 times a day. I am on so much medication it gets confusing, I've even forgotten when I have a hand full of pills as to which I've taken. It's all too confusing, especially when you are having a flare and would like nothing better than to be put in a medically induced coma.

Why can't there be something you drink, like peptol bismol that coats your bladder?

[just1ofamillion]

Probably because your body digests what you drink and eat before it gets to the bladder. It sure would be nice though! Well maybe that its been working the dose could be lowered.

Also, I have noticed little hair loss. Maybe just due to my hair thinning out over time (it's always been super thick) and I don't have a problem with it. But I've heard that when the hair loss is caused by Elmiron, it is localized to a certain spot.

[nmariebal]

It was also my understanding that Elmiron and I would be life-long partners.

[ICNDonna]

If elmiron helps, most ICers do need to keep taking it.

Donna

[nottoc4]

It has helped me soooo much and I have not had any hair loss.

[jvr]

Hi,

I think how long you take Elmiron also depends on the individual doctor. My local urologist gives his patients the option of taking it long term or trying periods of time without it. I get the impression from Dr. Parsons that he does not always like his patients taking it indefinitely. For my daughter and myself, he recommended taking it for the periods that we need it and that once we were stable for a number of months-he would recommend trying to taper off it too see how we do without it. He felt that why take it during the periods that we may not need it. I don't know if this is the case for everyone he sees, but it's just our experience. I'd hate to go off it myself for the remission periods though because I'd hate to start from square one down the line again...

Jill:hi:

[sailawaygrl]

I remember when I was first diagnosed with IC, I had been in horrible pain for months, I was exhausted and devastated by the diagnosis. Then you get the "you might lose your hair" line. You just realize that everything in your life is never going to be the same and to lose your hair on top of that, horrifying. I was so adamant that I would Never take it, however I did change my mind and took it. Never had any hair loss. It did take a whole year for me to really see a major difference, but I know it is helping me sooo much. I know partly because I forgot to order my refill and without it I am dying! I have cut my dosage so that I get some in each day but I can tell I am suffering without the usual amount. I am one of those that takes 400mg a day. So I guess my body requires more to help.

I only wish everyone did not have to go through the awful worry about their hair, I understand it, I was there too. I just seems so awful with everything we have that on top of it all.

I also know that I will be taking Elmiron forever, unless they develop something better. BTW, that year of waiting for it to help me was hard to deal with due to the high cost of the med, but I am glad I stuck with it, I think the biggest help was when Dr Evans increased my dosage to 400 mg a day, that is when I saw the most improvement.

Sandra

[jvr]

Hi Sandra,

How long before you saw a difference with the 400 mgs. verses the 300mgs. of Elmiron? That's interesting that you saw such a difference after that increase. I'll have to ask about this for myself and daughter. Thanks for sharing that:) Do you take the Elmiron with Atarax? Do you mind if I ask what your full regimen is?

Thanks,

Jill:hi:

[sailawaygrl]

Hey Jill,
I sent you a PM.

Sandra