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View Full Version : Recently diagnosed with meds questions



percy
10-04-2009, 09:06 AM
Hi all, :hi:
I received my IC diagnosis last month (finally) and am taking Elmiron. I am wondering what the time frame is for side effects? For those who noticed hair loss or bleeding issues, how long were you taking the meds before the side effects showed up. It would be kind of nice to know at what point I can say whew guess I'm not losing my hair!
thanks

Goldfinch
10-04-2009, 09:36 AM
From reading posts about Elmiron for several months, it appears to me that if you are going to have stomach or digestive side-effects, that will happen pretty quickly and can usually be managed in one way or another without stopping the Elmiron. Sometimes those types of symptom disappear after a short period of time. Loss of hair seems to vary widely. I've heard claims of hair loss after the first month, after three months, and after six months.

As for the bleeding or bruising, that seems variable too. I thought I was having bleeding side effects, but I couldn't prove it and they simply disappeared. I've been on Elmiron about nine months now, and only once, very recently, have I noticed a bruise that seemed somewhat more pronounced than would be typical for me. It's possible I simply banged myself harder than I thought.

Remember that only a small percentage of users have side-effects, so don't second-guess your symptoms. Just keep in touch with your doc if something starts to worry you. Also remember that the side-effects are reversible once you stop taking the drug. But give it a good chance to work; it can really make a difference for many of us.

Netgrrl
10-06-2009, 02:43 AM
The side effects varied for me as well. Hair loss began right away, and actually lasted for 6 weeks after stopping the elmiron. I did not have digestive side effects. As for bruising, that didn't become pronounced until 2 months after starting it. I developed bleeding issues (bloody stool) after about 3 months. Both of these side effects stopped right away when I stopped taking the elmiron.

jvr
10-06-2009, 05:08 AM
Hi,

I know it seems we tend to see a lot of people on here that seem to suffer side effects from Elmiron, but remember only 1%-4% of patients actually develop these side effects. Not high really, but I think we tend to hear a lot on here from the small percentage that do. My 5 year old daughter has been taking Elmiron for 2-3 months now with no side effects at all. I have just started taking it myself and have noticed none. Good luck:)

Jill

Diamic65
10-06-2009, 05:42 AM
Your Daughter is young to have IC. And you have it as well? I have IC and so dose my Mother.


DIAMIC65

percy
10-06-2009, 09:15 AM
Thanks everyone for the info. I just had such bad side effects with my fibro meds I thought it might be helpful to know what to expect. Thus far I'm only having gastrointestinal effects and they are a cake walk compared to the IC issues. I started following the IC diet before my tests when my Urogynecologist suggested he though that's what I had. Now that I'm taking the Elmiron I'm keeping my fingers crossed and hoping.

Diamic65
10-06-2009, 09:27 AM
I wish you well on the road to recovery. IC can drive a person crazy. I've having an IC FLARE for the last couple of days. It can get you down.

I have been feeling pretty low because all last week I was FALREING:cussing: I was hoping for a pain free week:shake:


DIAMIC65:toilet:

Lizalou
10-06-2009, 10:22 AM
I have been taking Elmiron for about a month now and noticed about week 3 my hair has been coming out more easily. I notice when i brush my hair i just have tons that come out, its kinda sad, but i have tons of hair so i don't worry to much.

I also noticed that my skin is drying up especially on my face..i don't think its due to the colder air because these patches came on so fast and they are awful.

But dry patches and a bit of hair don't bother me. I see some relief with the Elmiron.