Elmiron while pregnant? Also group B strep question

[pineland]

Is there anyone out there who is taking elmiron while pregnant? I won't go into all the details, but my perinatologist was okay with taking elmiron during my first pregnancy (I decided not to take it though). My IC was flared the whole pregnancy, as was my IBS (constipated the entire time). We got pregnant this summer after a surgery for endometriosis but lost our baby in Oct. I'm now at the end of my 3mo wait and can try to get pregnant again this month, but I've been in a flare with everything and am concerned about my body's ability to even get pregnant (or stay pregnant) like this.

I visited with my nurse practitioner yesterday, but she wasn't much help. She had med suggestions if I wasn't trying to get pregnant, or she suggested I try waiting another month and taking a lot of ibuprofen this month to see if it settles things down (I try to take as little of it as I can because more bothers my stomach). She also suggested massage or accupuncture.

I have an appt. with a new urologist in 2 weeks (my old one is no longer there). So, in preparation for his visit, I'd like to know if anyone here has taken elmiron during pregnancy?

And, I'd like to know who else has had trouble with Group B Strep (showing up in the urine during pregnancy)? I had trouble with it during the last 1/2 of my first pregnancy (had IV antibiotics every pre-term labor and oral at other times), and already had trouble with it during my last pregnancy (discovered during the 8th week). I understand this is something that stays with your body and acts up (or shows itself) when your body is in certain conditions, like pregnancy. I'd like to know more about it, esp. since it showed itself so early this last time.

Thanks! Sorry so long!

[sbear]

Hi there,

I asked the same question as you back when I first discovered I was pregnant and was taking Elmiron. No one replied when I asked, so after much consideration, and along with the advice of my Doctor (who said it would be okay, but was up to me) I decided not to take it. I have been off all meds since and am half way thru my pregnancy now. I have good and bad days, but more good. IC seems to be behaving most of the time. I wish you all the best with a safe and successful and pain free pregnancy when the time comes!

sue

[lyaeger]

I am considering pregnancy and am very worried to get off my medications. Is it worth it? Also does anyone have any insight into extreme flares during menstration? Let me know.

[Alexa]

Hi Pineland,

I answered another post earlier to Melly who asked the same question about Elmiron and pregnancy, so I just wanted to share the same information with you:

As for Elmiron and pregnancy, when I asked my urologist about that, he said that there have not been any long-term studies done on the effects of Elmiron and pregnancy due to the obvious ethical issues, and it is a relatively new medication. Personally I wouldn't take Elmiron if I were pregnant, but I would discuss your questions and concerns with your doctor.

I hope this helps! Take care and good luck :)

Alexa

[jaime15]

Darcy,
I hope everything is going well for you. I had been on elmiron and didn't know I was pregnant. But stopped it as soon as I knew. And as you know Zane is a healthy two year old.
I wouldn't take it either. If there isn't enough research about it then don't risk it. If something happened you would beat yourself up wondering if your meds did something.
I hope your little one is doing great!
About the group b strep. I know my sister-in-law had it when she delivered my niece. They just gave her the antibiotics like you received, I guess.
I think the only problem with it is they don't want it to be passed to the infant so they will check for it during each pregnancy. Maybe google it and see if you can find out more that way?..
I hope it works out for you guys!!!
Hugs and prayers!!!

[jaime15]

And to Leah: A baby ends up being soooo worth any trouble after they are in your arms. I didn't have many flares during my pregnancy. I guess I was lucky. But I did stay sick (nausea) the whole time. You never know what your body will do. Everyone is so different. Hopefully when you decide to get pregnant your IC problems will be at a minimum and you'll do great!

[momw/ic]

I just had to reply because my son's (will be 7 next month)name is Zane. I have only known one other Zane (except for the author). It is such an unusual name but I love it!

[jaime15]

That is neat. We don't know another Zane either. He was named after Zain in the Bible but we changed the spelling and of course hubby knew of a pro wakeboarder named Zane. lmao

[Panda]

This is my first replay to a message in the board as a new user. I too would not take elmiron during pregnacy as there has not been enough research completed in my opion.I was vey lucky during my pregancy as my symptons were better than what they had ever been. I decided not breast feed so I could start elmiron straightaway. My son is now 17mts & most of the time things are ok Although it has not been easy at times so very worth it when you hold your child in your arms. Good luck with your decision
Andrea baby

[sparklebabyprincess]

while people are on the subject anyway, I thought I'd ask what I'm curious about, if you stop taking elmiron, how soon after the baby's birth can you start taking it again, if your breast feeding, and does it take another 6 months for elmiron to start working again?

[jaime15]

Sparkle,
I've heard of a few people who went into remission while breastfeeding and didn't need their elmiron. Wouldn't that be a luxury! :) I felt fine 4 months after having my son. (And I couldn't breastfeed him.) Then I had my first flare, post pregnancy, and started back on elmiron.

Answering your question, any meds you take while breastfeeding will flow through the milk into your child. In my opinion, if you wanted to use your milk, pump it as much as possible, freeze it and then if you decided it was time to start the elmiron again you could use the frozen milk. And who knows by then it might be time to put your little one on whole milk.??

Hope everything works out for you! hi

[pineland]

Sparkle,

As far as breastfeeding goes, I highly recommend the book "Medications and Mother's Milk" by Dr. Thomas Hale. He goes through most medications and the risks involved with taking them during pregnancy and breastfeeding. Elmiron is considered L2, which is the second safest category. He states the following:
"Although no data are available on its transfer into human milk, its large molecular weight and its poor oral bioavailability would largely preclude the transfer and absorption of clinically relevant amounts in breastfed infants."

Actually, most medications are okay or there is an alternative that is. Most people aren't aware of that (drs included). Always ask a lactation consultant if you have any question about a medication (or surgery). They most often have the most accurate info for you.

Breastfeeding is so wonderful and worthwhile for you and your baby. I highly recommend and encourage breastfeeding with child-led weaning (extended breastfeeding) for as long as you possibly can. We breastfed until Olivia was 2 1/2 and I can't say enough good about it. :)

Get the book, or find someone who has one, or ask a lactation consultant. Drs (and nurses, and pharmacists) usually go by what the medical companies put on their labels, which saves them all legally. It's not, however, usually the most accurate information, and reading the book will give you a good description of what the particular med does in the body and what chance there is of any milk transfer, how much, etc.

[pineland]

Hi Jaimie!

Nice to see you! I don't get on here much anymore. Olivia will be 3 in 3 weeks! I can hardly believe it!

I am seeing a urogyn who is doing bladder treatments and am taking the Elmiron for now (if I do get pregnant I'm going to stop). The whole thing is too long to get into, but I just wanted to say "hi!" to you! :)

[fireflicker285]

I think the group B strep is a concern around delivery time and not before. That is when it can be passed on to the baby. They give IV antibiotics I do believe. As for Elmiron in pregnancy I have been told by a few doctors not to take it. They just don't know if it may increase birth defects etc.

[jfletch]

Hello,

I am 34 weeks pregnant. I have had 5 "UTI"s with inconclusive urine tests since 20 weeks. They have often tested positive for Group B strep, but on cath specimens, nothing. At this point I have had painful, burning bladder for a week, and my culture came back with white blood cells, nitrites, but no bacteria. My OB suggested that Elmiron would be safe, but I only have a few weeks to go, so I'm thinking I'll tough it out. But if this had started earlier, I might have taken it, I don't know, there isn't much research yet. Tylenol is in pregnancy category B, as well. But I think my doctor is a drug doctor, that's something I really don't like about her, so I do not always listen to her about those issues.

I'm going to a gynecological urologist today-she may do a cystoscopy. I hope it's just inflammation and nothing worse. So tired of the pain.

[Charisse]

I've been told by two OBs that Elmiron is category B and that it should be safe. But one of the drs did said it hasn't really been around very long for him to be entirely comfortable with and since I'm bruising from it that obviously it's effecting me systemically so it could get through to the baby if it's going through my blood. Overall he still felt very comfortable with me taking it if I was to get pregnant.

Group B strep is only harmful if it's passed to the baby during birth so that is why it's only necessary to take antibiotics for it during the very end of your pregnancy. It's not a harmful bacteria to have in your body normally and you have probably been carrying it for years and just didn't know it because they've never tested you. They don't usually test for it until later in your pregnancy. I do not have kids of my own but I was a doula for a couple of years so I had to learn all this stuff!

[Braedley]

I'm 23 weeks pregnant and have chosen to stay on Elavil while pregnant; the doctors were wary b/c Hale says (in my doctor's books) that it is cat. D...the Toronto's hospital for sick children said it's perfectly fine to take while pregnant, no risk to the baby...

I would have to say I don't think I could have had a successful pregnancy without staying on course w/the treatment; we had tried having me med free and it was very unsuccessful...I have to be well in order for me to have a healthy pregnancy, and I do not regret my choice - but it is a hard decision to make...

my new uro was reluctant to change my course of treatment right now as I'm feeling good and where I'm pregnant, but once I have the baby we're going to discuss Elmiron for the spring...

[GWENDOLYN]

I am week pregnant and decided to stop taking elmiron upon learning I was pregnant. If I start to feel too bad, I have the option of going back on it. So far, I have not felt much different. My doc did say it would be ok to take, but I wanted to see how I did without it for a while!
Gwen

[mommy-2-reegan]

I heard Elmiron hasn'tbeen tested and I personally wouldn't want to test it on my baby. I would rather go through my pregnancy with nothing than risk anything happening to my child. I will pray for you to get pregnant an carry full term with out any pain or flareups. I heard some ppl go into remission during pregnany. My hubby and I are trying to get pregnant and I am praying to remission....Goodluck!!!!!!!!!!!:smile tee

[Charisse]

I just wanted to clarify that there is no medication that has been tested on pregnant women. It is unethical to do these kinds of tests and so no drug company is comfortable doing a proper study. The safety ratings are based on evidence "after the fact" which is how they found out Paxil wasn't safe for pregnancy etc. This is why drs are sometimes more comfortable with drugs that have been around for years versus drugs with better safety ratings. Hope this makes sense.

[vtcurtis]

I also have group b strep. My doctor said that a huge % of women have it in their bodies and never know it until they get pregnant and they have to test for it.

I never had any issues with it before having our daughter. They gave me an IV of antibiotics during my csection and she was fine! They say it only effect 1% of all of the births every year and that's usually when antibiotics aren't used in the birth.

I'd check with your doctor about it though - he/she will know a lot about it!

[Jessica9379]

I'm more concerned about going off of Elavil and Atarax than the Elmiron.
Those 3 drugs have been a miracle combination for me - many, many remissions!
I've decreased by Elmiron down to 100mg with no problems.
I tried to decreased my Atarax by just 10g about a year ago - and it was hooorrrible. Major very long flares. I'm dreading trying it again ....

[AprilK08]

I am 23 weeks pregnant. My first trimester I was in remission but now it has come back and seems worse. The symptoms went away with my son in the third trimester. I am hoping this flare does not last long. I am going to talk to my uro about getting on elmiron and was wondering since I am almost in the last trimester maybe he will let me take it.