Just starting Elmiron

[breannavich]

Hi guys, I am going to be starting Elmiron (finally!) next week and was just wondering what to expect. I know some people have a bad reaction to it or are unable to take the pill without removing the plastic caseing-do you know pretty quickly if that is the case? Also, I was told by my urologist that if the Elmiron works that food should not be so much of a trigger. Does anyone find that to be true? Any feedback would be great, thanks!

[an0bgobeloba]

hi there, i just read your post about finally starting to feel a little better. so i wanted to say :woohoo: to that first! i was scared to start the elmiron too! reading through the list of side effects sounds worse than ic! but the reality is that very few people have those side effects. i think i had read that only 4% of people lose there hair. so your chances of being helped by elmiron are WAY higher than your chances of losing your hair. icdonna recommends that you collect a hair sample pre elmiron, so that if your ever wondering, you have something to compare to :) as for what to expect, the first night that i took elmiron i was so sick to my stomach. i cried because i was so disappointed that it was a "no" after just one pill. but it must have just been something because i have had no side effect from it since then!!! :woohoo: hopefully others here will chime in so you can have more information :angel: good luck and keep us posted!

[vm]

One thing about bad intestinal effects from Elmiron - my uro told me to wait a week or two before taking the Elmiron out of the capsule. He suggested I wait to see if side effects like that got better as my body adjusted to having a new med in my system.

I had nausea the first few days, but then it went away. I was glad I didn't immediately go to dumping it out b/c I really wouldn't have needed to do that. However, there are people who have very strong reactions to it and absolutely are helped by dumping it out - and NEED to dump it out.

Elmiron definitely helped me be able to add back in trigger foods. It took several months before I could - some things a year or so, but I can eat everything again now.

[ICNDonna]

What I suggest to someone who will be starting elmiron is that you take a clean hair brush, brush your hair thoroughly, then comb the hair from the brush and store it in a sandwich bag. Then if you feel you might be losing some hair because of elmiron, you can do the test again and compare hair loss.

I hope you will be helped by it.

Donna

[LittleRed333]

I had heartburn when I first took Elmiron but after awhile it went away...sometimes I take the Elmiron with food and sometimes I take it on an empty stomach.....I have been on it for 5 1/2 months and it is working for me....I was having some hair loss, but as I posted on another thread, I have noticed it is tapering off....

Bless, Sharon

[wfarrell]

i got my elmiron this afternoon when i got home. I did not start it today since I didnt want to only take one today and then start the 3 tomorrow. Is that the right decision?

[Goldfinch]

Taking your first one tonight isn't a bad idea at all. Your body will have an extra few hours to adjust. Can't see a down side, really!

[wfarrell]

I started Elmiron today. I have a headache though :confused: I always worry about taking OTC when on other meds. I dont recall seeing anyting that I cant take tynelol but i think it is turning in to a migraine, and i usually take excedrin migrane for that, i do have script ones to but those wipe me out. Am I being paranoid? I know you guys cant give me med advice but what do you think I should do.

[krisillis]

Call your pharmacist. They'll have a list of everything you're on (if you're good and go to the same pharmacy to fill all your prescriptions) and be able to tell you what OTC drugs will interact with your prescription meds and what OTC meds you can take safely. Plus you'll get an answer faster than waiting for your Dr to call you back.

Christine

[Goldfinch]

I too have just received my first script for Elmiron. I have a new uro (my third try) that I like very much even though he isn't an IC specialist, and his is the second recommendation that I start on this drug. I am going with the standard dose of 100 mg 3 x per day, and, for the time being, nothing else except Urelle as needed and of course The Diet.

This doc says none of his other IC patients have had problems with hair loss, and although many on these boards have reported hair loss, the statistics are pretty low, so I am guessing many people here who take Elmiron don't experience hair loss or experience it only minimally.

Nausea and gastro-intestinal distress sound like the next most likely side-effects--but more immediate and likely to go away. I've read that Elmiron is best taken on an empty stomach, either an hour before a meal or two hours after a meal. I've also read that if nausea is a problem, you can take it with a small snack, like a couple of crackers or something.

It will be interesting to see how everyone is doing their first couple of weeks, and then down the road...

[wfarrell]

yesterday I had a headache, but i think the med just added to it. i was able to take excedrin migrane. Today I am doing fine, of course I am still taking my urelle. It has been a crazy stressful week this week and last so I hope that changes soon but i feel pretty good. I realize that the elmiron is not working yet but i am not having any side effects either.