Dosing and Bad Side Effects

[Cortana-mana]

I have had a lot of blood and a lot of abdominal pain recently. Enough that I am pretty well housebound. I have been through a gamut of testing since then and today the gastroenterologist told me to immediately stop taking my Elmiron. She was in fact VERY upset that I was EVER told to take 200mg twice a day.

She is worried about permanent damage because of the high dose, which has me pretty freaked out. I won't have a colonscopy for over a month because they were overbooked.

I have two questions:
1. How long has it taken other people for side effects of Elmiron to disappear? I am sure that it is likely to vary, but I figured I might get an idea.

2. Is it really that unusual or that terrible to have a total of 400mg prescribed? She indicated that a different IC specialist might be in order.

[jvr]

Hi,

Sorry to hear about your gastric issues with the Elmiron. I began to have some minor issues after about 3 months and was able to resolve everything by taking it out of the capsule and emptying the contents in a shot glass with water. Your issues sound a bit more complex though.:( I had a friend who had stomach pain and blood I believe in her stool. I asked an IC specialist who knows Elmiron extremely well about these side effects and he didn't seem overly concerned and recommended that she take the Elmiron with Atarax to see if that would resolve the issues. 400 mgs. of Elmiron is really not that unusual. The FDA recommended dose is 300 mgs., but many take 400 mgs. Some take as high of a dose as 600mgs. I don't know how serious your situation is our what your history is, but I hope that everything turns out well for you:)

Jill:hi:

[mary124]

Hope you get better soon. 200mg isn't high like Jill said. I take 600mg. I did have problems but found emptying the contents in a little bit of applesauce helps.

[ICNDonna]

Some people can't take elmiron without gastric distress. I tried taking it and it gave me a non-stop headache. I didn't see it as a reason to change urologists --- I simply told him about my reaction and we agreed that it was not okay for me to take it.

The headache disappeared within 48 hours after stopping taking it.

Some people take 400 mg a day with no problem; some are even taking more than that. The recommended dosage is one 100 mg. capsule three times daily.

Donna

[Cortana-mana]

Thanks for the responses. I do take my elmiron out of the capsule, but the blood in my stool is a large enough amount that I am severely anemic.

I'm glad to hear that the dosage amount wasn't crazy. She nearly made me feel like I had done something wrong for listening to my doctor, although she was merely stressing her concern for me and the need to get off the medication immediately.

I had this problem when I started Elmiron in December of 2008 and the doctors who I spoke to said it wasn't an issue and ignored it. It has gotten worse since then, which apparently suggests it will continue to get worse.

[Goldfinch]

As far as everything I have read, the side-effects of Elmiron are reversible when you stop taking it. If I was bleeding at all I would stop taking it to confirm that's that problem, and make sure everything's back to normal for a while.

It's possible that a low dose, for instance 200mg per day, would not have this side effect for you, and in a few months you could try Elmiron again at a lower dose, but I know it can be unnerving to have side-effects from meds, and trying again doesn't always seem like an appealing prospect.

[Snowden1]

I had the same reaction you did. Gastro issues and blood in my stool. Quite a lot of blood. I had to stop it. I wanted it to work so badly. I tried different amts after my intestines felt better. However, I was down to two 100 mg caps a day and still had the same reaction. I took it out of the capsule too. I also started with one pill and tried to go up - this didn't work for me either. I keep thinking I will try again, but don't want to now.

[Cortana-mana]

I am hoping to go on instillations tomorrow when I see my urologist. I don't think I will ever try Elmiron again. I have hurt so terribly and been so weak with the anemia that it wasn't worth it.

[wnichols]

I took Elmiron 100 mg 3 times a day for 2.5 months no issues About 2 weeks ago, I noticed some mild hair loss mostly when I took a shower, I'd have more hari on my hands after I touched my scalp than ever before. This symptom seemed liveable, given that I believed I was getting better.

Then, one evening when I Got out of my car, I felt a sharp pain in my left knee. The pain was very odd, but I do the usual thing, ice, stay off it etc.

Then my right knee started giving me problems.

I refused to believe it was Elmiron, becuase, heck stuff happens, and I suffered 2 weeks of knee pain, untilf finally read that joint pain is a side effect. (not mentioned on the pamphlet, but found on the web). I decided to stop taking the drug.

I seem to be improving and the knee pain is going away.

This stinks, because I think the drug is doing some good. But the knee pain was worse than the IC pain and I need to be able to walk etc to remain fit.

[Cortana-mana]

I know what you mean. All my symptoms started almost immediately when I began the medicine in December of 2008. I told my specialist, my general practitioner, and my pharmacist. All of them said that it couldn't be a side effect originally, until I showed them the paperwork. Then they all told me it wasn't a big deal unless the stool became dark and tarry. None of them looked into it at all. Over the course of the next year the side effects sort of cycled around. Taking it out of the capsule helped for a little while. In November the side effects suddenly became unbearable. I had moved in that time and went to different doctors because of it. They took all my concerns very seriously, but not all doctors want to believe the supposedly "rare" side effects could actually occur to the patient in front of them.