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Interstitial Cystitis (IC) Message Board

Interstitial Cystitis/Elmiron/Pregnancy?

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Old 05-24-2007, 07:47 PM   #1
Join Date: Oct 2006
Posts: 85
yellowbird14 HB User
Interstitial Cystitis/Elmiron/Pregnancy?

Hi! I am a 23 year old female who has interstitial cystitis. I was diagnosed in 2002, and have been living on Elmiron therapy since. I became pregnant in January and stopped taking Elmiron on my own because I was unsure of the effects, if any, on the baby. Recently, in April, my IC became really flared up again and I spoke to my OB about getting back on it. She said it was okay to resume my normal dosing as the drug is category B, etc. So I resumed taking it. Just yesterday, I saw my urologist who said "you may be feeling more urgency/pain since you can't take Elmiron while you're pregnant, because there isn't enough research, etc," and I nearly stopped breathing, because I've been taking it now for a month. I explained to him that my OB said it was ok, and now I'm nervous. He seemed to relax when I said I had my OB's blessing, but suggested that I decrease the dose if I can.

Now I'm confused - do I go on the word of the urologist who specializes in IC? Or do I follow the words of my OB who specializes in babies and the effects drugs might have on them?

My question is: Is there anyone on this board who has IC and took Elmiron while pregnant? Please let me know if you have. I'd be interested to know the effects, if any, it had on the baby, because now I'm terrified. I know I definitely will not be breastfeeding in case the drug is excreted in the milk. Thank you for your time.

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Old 05-30-2007, 08:09 AM   #2
Join Date: Sep 2006
Location: Kansas
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srivera HB User
Re: Interstitial Cystitis/Elmiron/Pregnancy?

I read that Elmiron should only be taken during pregnancy if the risk to the mother outweighs the potential risk to the baby, as there have not been adequate controlled studies of use in pregnant women. There may be no side-effects at all, or there could be. But since no real testing ahs been done it is unknown. Are there any other medicines that may help you with IC that have been tested more thoroughly? I know hydroxyzines (Vistaril and Atarax) are presumed safe to use after the first trimester and can be used to help with IC.

Old 06-16-2007, 05:43 PM   #3
Join Date: Oct 2006
Posts: 85
yellowbird14 HB User
Re: Interstitial Cystitis/Elmiron/Pregnancy?

Thank you for replying. I'm sorry it took so long for me to return your message - I stopped checking my post after a few days of no replies.
I don't know if those other medications might be helpful for me. Since I've never been on them, I'd be too afraid to try something new at a time like this. But thank you very much for your suggestions. After careful consideration, and talking with 2 OBs, I have decided to continue Elmiron, but at a decreased dose.

Old 06-17-2007, 02:24 AM   #4
Join Date: Jun 2007
Location: USA
Posts: 65
Ihurttoo HB User
Re: Interstitial Cystitis/Elmiron/Pregnancy?

Congratulations on your pregnacy! Though I have had IC for 6 years, I didnt get d/xed until after I had my son, on May 8, 2001. So, I didnt take it when I was pregnant. I had to have a total hysterectomy 2 yrs ago, (due to severe endo), but prior to that, we were trying to concieve. My OB also treats my IC, and told me that I could take Elmiron while I was pregnant. He basically said the same thing as the previous poster.

Also, before I came here, I moderated an IC site with 30,000 members. We had several ladies who took it while pregnant, but we also had several who had been told they could not. So, I guess what I am trying to say is that I agree with the previous poster.....if you are going to be in a flare the whole time you are pregnant, than it sounds like the benefits outweigh the risks. After all, the stress and pain of the flares can stress the baby, just like the mother. So, I would take it. However, I would get more frequent liver panels taken during pregnancy, to make sure that things are going okay.

If you still have doubts, that poses significantly less risk to the baby, and that would be to learn to self cath and instill the Elmiron directly into your bladder. I know it sounds horrific, but it honestly is totally different than being cathed by someone else. In fact, I do this every day. I do rescue instills daily and open the Elmiron capsule and mix it with my Lidocaine, Sodium Bicarb, and put the meds in my bladder with a very small cath. The size is a 5 French. (It is about the diameter of a straw on a child's juice box.) I apply topical Lidocaine jelly before I cath to numb, and I also use it to lube the cath.

The advantage of doing that for you, would be the meds go directly into the bladder, bypassing the bloodstream, so very little (if any) would reach the baby. However, MORE of the Elmiron would make contact with your bladder so you would probobly feel better than ever!

You might ask your OB and URo about this option and see what they think.

If I can help you with anything at all, please let me know. I will be glad to answer any questions I can.

Again, congrats on your pregnancy!


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