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Interstitial Cystitis (IC) Message Board
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Old 10-29-2005, 12:13 PM   #1
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sunshine8790 HB User
Interstitial Cystitis

I've been taking Elmiron since July 11 and I've lost most of my hair, it's so thin now. I am so swelled, I've gone from a size 4 to a size 12 and gained 12 pounds. I can deal with the frequency and pain but this swelling and weight gain depresses me so much, I just don't have any self esteem left, I look like I'm 6 months pregnant. There just doesn't seem to be any answers.

 
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Old 10-31-2005, 06:19 PM   #2
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Re: Interstitial Cystitis

awww,,,so sorry you sound very down... I have been on Elmiron for a few months,,,yes, some of my hair is falling out, & ive gained about 5 lbs,,,but that is b/c i cant stop eating,,,lol
Do you belong to any support groups? Its hard to live with this,,I should know. I wish i could make things better for you.
Just know you are not alone~~~

 
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Old 10-31-2005, 06:24 PM   #3
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Re: Interstitial Cystitis

Thanks for the reply...I don't belong to any support groups, there aren't any in my area. I appreciate all the support from these boards though.

 
Old 11-09-2005, 04:36 PM   #4
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Re: Interstitial Cystitis

Yikes...I am glad I came ot check this out. My GYN just gave me the information on Elmiron. After erading about the side effects...I am somewhat apprehensive about taking this medication. I was at my GYN today getting my annual exam...she was pushing around down there...and when she found the tender spot she siad it was my bladder. I have been living with this pain for over 2 years now. Last year she told me it was my intestines that were hurting. I am just reluctant to take this medication if I do not have a definitive diagnosis of IC. I have a Barium Enema scheduled for Friday and an upper GI scheudled for a week from Friday. I think I will wait to see what the doc says about these tests before taking Elmiron.

How were you diagnosed with IC?

 
Old 11-09-2005, 04:40 PM   #5
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Re: Interstitial Cystitis

I was having alot of pain in my bladder and frequency with urgency and the doctor did a cystoscopy and found out I had ic and 2 polyps in my bladder...so he put me on Elmiron...now he wants to do a hydrodistention with dmso.

 
Old 02-15-2006, 09:02 AM   #6
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Re: Interstitial Cystitis

Hi all...Joym,,,i was just wondering how you made out with all your tests? did you start the elmiron?
I have not been doing good,,just had an IC flare, & look like a abloated whale,,its really getting me down. (on top of alot of other stuff i wont go into) ..*sigghh*

Sunshine,,,i hope you are in better spirits~~~

 
Old 04-25-2006, 02:00 PM   #7
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Re: Interstitial Cystitis

Sherrie in Oregon here.
I was on Elmiron for my IC for over a year. Long story short: lost some hair, got a digestive problem from the Elmiron and more meds for that new symptom that's stuck. I also gained some weight. A lot. And I also have the edema so bad I now have to take med for that too. And during this entire process my pain med just kept going up. So, it basically didn't work at all the way it was suppose to. The ONLY thing it did help was the frequency, and not really well. I only missed it at night as it made me drowsy all day so I slept better. I think anyone who says it is working very well for them is probably on some other kind of med. at the same time that is contributing to the releif of their symptoms. The Elmiron is just a very expensive drug that basically did the same thing Detrol or Ditropan would do. It did NOT alleviate ANY of the pain. In fact my pain med. was just bumped again by my pain mgmt. doctor. I just hate to sound so depressing but please do not waste a year of your time and a lot of your money on something that is not at least 90% for sure. I've read that about 50% of the patients have had some improvement. That's not a very good statistic.

The hydrodistention is a good way to take a look-see in your bladder. It shows how bad your IC really is and, although it hurts like heck for a few days after, it actually does relieve the urgency symtoms for a couple of months. I've had about 3 of them. Beware of the doctor that says your IC is not severe and you should not be hurting that bad. A light case of IC can mean a lot of pain to some people. I also know someone that had blood in her urine every day from the disease and hurt hardly at all.

My advice, get a good pain mgmt. doctor that will work with you and make sure your Urologist is on board with it. Have regular vistis with your Urologist every 3 to 6 months so he/she can monitor you and get something for the urgency/frequency from that dr. This disease is for life. I've had it for 15 years now with only 1 or 2 good years in between and I'm just in my mid-fourties. Some people can have remission for years. I wish you the best. Be very careful about what you eat and drink and wear and good luck to you!

 
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