Please Read! - Drugs & Fetal Complications

[icnmgrjill]

For this board ... I absolutely have to reinforce the disclaimer below!!!!! Please read and then carefully consider these points!

The use of various IC therapies during pregnancy and their associated risk of causing fetal abnormalities is a complex question that can ONLY be answered after careful consideration, research and discussions with YOUR personal medical care providers.

Under no circumstance should you accept another IC patient report that they used a medication "safely" during THEIR pregnancy as justification for you using ANY medications during YOUR pregnancy. Each mother and fetus are unique individuals that will have their own vulnerabilities and drug sensitivities.

[meme]

Thanks for the info! My doc said absolutely no drugs a month before TTC. Its always best to check as everything seems to trigger us differently!

[melanie626]

Yes, if anything it should open a dialouge between you and your provider on what is best for you and your pregnancy with IC. For me, it was a lot of work, but I was happy that I got a consensus of similiar opinions for my particular situation. I recommend if in doubt, get a second or third opinion so you feel confident with your choices.

Best of luck

[tigger_gal]

I absolutely agree, and I would like to add, if you are planning pregnancy and have the interstim, please contact medtronics directly.

[ABliske]

I went to my OB today to ask about what I can take during pregnancy and what I can't. At first, she said Tyenol only, but I don't think she really understood that for me it'll be pain killers or no pregnancy at all. She decided to refer me to a special cases pregnancy doctor. I really hope that he can help. I have to wait until August 30th now and I was expecting to come home with some answers tonight.
It's was a really disappointing appointment. I don't think there's much that, that doctor did know. I finally told her my friend took Prozac during her pregnancy. She said that people with psycological problems are usually the first to receive meds during pregnancy. It wouldn't be worth it to risk a suicide or a mom not eating. I just have a hard time with that answer! I feel like my physical problems are screaming for attention. No one really understands this. I thought even though the doctor might not get IC she would know about pain meds. That's so basic.
Also, I did a little reading on the pregancy thread and a lot of moms got worse. The doctor was only counting on the fact that she thought the pregnancy might help the IC and then I wouldn't neeeds meds.
NOw I'll be paying double. Another visit equals another $100 +.:cussing:

[melanie626]

Hi-
I hope your appt went well, feel free to PM me if you want to chat, I did a LOT of research and am happy share any tidbits of waht I learned or how I went about reaching some of the decisions I made that were right for me. I am 27 wks and all is going fine and I am on a LOT of meds with good MD support.

Cheers-
Melanei

[ABliske]

Wow Congrats!!!! It's good to know that other ICers are willing to try going through pregnancy. The doc told me that what I'm on should be okay.
I take MS Contin so I was pretty surprised. I should be gettin pg soon!! Gotta go.

[slukic]

Currently in 7th week ( and hopefully going on...)
NO IC SYMTHOMS at all. NO freq. either (4 times /day)
Have been on MSM but stopped that. Taking prenatals vitamins and eating a
LOT of sour food (oranges, pickles, anything I can get hands on) without any problems.

Find pregnanacy waiting very very stressful but certainly the IC is gone (for now).

[MINNIEB]

I Know What U Mean About Drs Not Getting The Concept Of The Pain Meds. I Too Am Having A Hard Time With This Because I Desperately Want A Child And I Know There Is No Way That Could Happen Without My Pain Meds. Its Not Even A Remote Possibility. I Dont Have Any Words Of Wisdom But I Can Say I Can Definately Relate. Good Luck Finding A Dr That Will Understand And If You Do Find A Way To Become Pregnant And Stillo Stay On Meds-please Let Me Know. Im Trying To Get An Answer For That Myself. Again Good Luck And Lots Of Prayers!!!

[amaranthe]

The pain meds thing (and nausea meds thing) seems to be made very much a case by case basis and even a Dr to Dr. basis. When I was first pregnant, I was SO incredibly sick, I was throwing up all day every day. My first OB put me on a med to help with nausea and vomiting b/c it was so bad. The med helped alot. I still had some N/V, but with the med, it wasnt all day like it was before. Well, by about 8 weeks into my pregnancy our ins changed and my old OB didnt take the new one. When I found a new OB, she was VERY oppossed to taking ANY meds during pregnancy and wanted to pull me off the med that as helping. Worse than that, I was also starting to have IC pain and bad lower back pain and she would give me NOTHING for that either. (I dont just mean she wouldnt give me pain meds, I mean she wouldnt give me ANYTHING at all for it. She just told me to take some Tylenol or Motrin. (As if I wouldnt have done that already! :cussing:) It was extremely frustrating cuz I knew my other OB thought it was ok! So, I switched Drs and found a new OB. This one gave me back the med for nausea and vomiting and DID give me pain meds (Demoral). I STILL wasnt sure if it was okay or not and wanted to do the best thing for the baby but be out of misery too, so I got a few opinions from other Drs too, (two other OBs). The other 2 OB's agreed that with my conditions that it was appropriate to treat them with the meds and that it would be more harmful not to treat the N/V and the pain, than it would be to treat it. But everyone agreed that no one is sure what the risks are when it comes to any meds and pregancy b/c no meds have been tested on pregnant women due to the possible risks. So, obviously they want to r/x as little as possible for that reason, and pregnant women want to take as little as possible for the same reason. So, I only took it when I was in unbearable pain and after I had tried everything else. I didnt use it the same way I used pain meds before or after pregnancy. (Like prior to and after pregnancy, I would take pain meds when the pain first started coming on, to "get ahead of it and head it off". But when I was pregnant, I didnt do that. I would see if Tylenol or Motrin, or antacid would work, or massage, or a hot bath, or resting, etc. Then, if NOTHING ELSE worked and the pain didnt subside or got worse to the point I couldnt take it, then I would take the pain meds. (He actually only gave me enough to use it this way anyway.) Now that I am no longer pregnant, my pain Dr wants me to take my meds when the pain starts. But when I was pregnant, the rules were totally different. Does that make sense? Hope so!

[Pumpkinsmom]

Slukic, I know it's been awhile since your post, but I was curious, Why did you stop taking the MSM? Was there something specific about it or were you just being cautious? I have been taking MSM/Glucosamine for a couple months now (6 months preg) because my urologist wasn't able to diagnose me before I got preg. and therefore won't prescribe me anything, so MSM/Glucosamine has been my only relief. It's been a God-send. I was just wondering if you had heard of any ill effects with it and pregnancy. Thanks. And I'm guessing you have already given birth. Hope it went well. Did you have any bad flares after the fact?

[playethic]

New post about a new report today, to do with opioids/pregnancy. Excerpted from ICA:

Opioids & Topamax Linked to Some Birth Defects

The FDA has upped the risk category for the medication topiramate (Topamax), an antiseizure medication that is also used to help prevent migraine. It is now in pregnancy category D, meaning there is evidence of risk to the fetus. Some IC patients may be taking this medication to prevent migraines, so it may be a concern for IC patients thinking about pregnancy or for those who are pregnant. Because this medication isn't normally prescribed for IC symptoms, we did not include it in our list of medications and their FDA pregnancy risk categories our article "Treatment Choices for Pregnancy and Childbirth" in the most recent issue of the ICA Update.
The article did discuss opioids for pain control, and a new report from the Centers for Disease Control and Prevention (CDC) linking opioid painkillers to birth defects, so if you are thinking about becoming pregnant or are pregnant, you may be concerned. The report linked opioid painkillers taken just before or during the early stages of pregnancy to a modest increased risk of congenital heart defects, spina bifida, and gastroschisis (a type of hernia) and to some increased risk of a few other conditions. The pregnancy risk categories that the FDA assigns to these drugs could change from what we noted in the ICA Update article, so, as the article emphasizes, if you need pain control for IC during pregnancy, get the help of knowledgeable healthcare professionals, such as perinatologists, neonatologists, and lactation consultants, to weigh the risks and benefits of these medications for you. These professionals will be staying abreast of any changes in the FDA risk categories and any other new information about the effects of these medications on you during pregnancy and on your baby-to-be. We know that some IC patients do well during pregnancy because IC symptoms subside or because they can control symptoms with self help, physical therapy, or alternative techniques, so they can avoid even low-risk medications. But others do not do well. For them, the choices are difficult, but they can make the best choices for them by working with healthcare professionals who are experienced in managing pregnancies of women with serious health challenges and the health of their babies.
You can help us learn more about what happens to IC patients during pregnancy and what treatments help you by completing our pregnancy and IC survey at ichelp.org/pregnancysurvey.
Posted March 10, 2011

[tigger_gal]

Going to add something here also. I adopted my niece an nephew. my son is FASD Fetal alcohol spectrum disorder and has sever problems, and my daughter is fase fetal alcohol syndrom effects. PLEASE no matter what your obgyn says, NO AMOUNT of an alcoholoc beverage is safe during your pregnancy. What ever your fetus is developing at the time you dring you are destroying that part of the brain for that part of the body function.

[ABliske]

Wow! Last time I wrote on this board was before I was pregnant. Opioids are considered more dangerous now? I'd like to hear more about this. VERY lucky for me, but son was born with no health issues!!! He's almost 3 now!

[Sbg]

Hi
hi, I have never used this forum so I am a little nervous.

I have had IC for 12 years now and as everyone it has been a rollacoaster of medication, tests, confusion and tears. We had a terrible year in 2010 and I was unable to go out or do anything. Now I have DSMO installations every 8 weeks. I know this is an old treaTment but it has really saved me and gave me my life back.

Anyway my husband and I are about start a family and I am so scared and confused but also so so excited. I am just co fused about the medication. I am currently on gabapentin and they are advising that I will b able to take this. Has anyone been pregnant and taken gabapentin? I am live in Australia so we have access to different medications. I also take digesic for break through pain
doesn't anyway else use this medication?

If anyone has any advice bot IC and pregnancy I would really appreciate it.

Thanks everyone

[flowerangela]

wow opiods are considered more dangerous now :( hope im not getting pregnant anytime soon then...

[alidee81]

Anyway my husband and I are about start a family and I am so scared and confused but also so so excited. I am just co fused about the medication. I am currently on gabapentin and they are advising that I will b able to take this. Has anyone been pregnant and taken gabapentin? I am live in Australia so we have access to different medications. I also take digesic for break through pain
doesn't anyway else use this medication?

If anyone has any advice bot IC and pregnancy I would really appreciate it.

Thanks everyone

First of all, welcome here-- I'm not on a lot but I use it for info. I also came to look here about Gabapentin.

After my bff just had her second child, and I'm getting information about getting preggo myself with IC, I'm beginning to freak out about having to go off of Neurontin aka generic Gabapentin. It's been the ONE med that I have taken for years, and it keeps me in remission. I have barely had any flare ups since my IC Doc put me on it, and I'm literally FREAKING out about Gabapentin. I'm thinking that a new thread is necessary to get the attention this needs, Sbg. And please, if you learn anything, PM me!!! I want to know what you find out. Here in the US, the FDA calls Neurontin a Class C for pregnancy, so that worries me-- meaning that it does get into Breast Milk.

[tigger_gal]

Pleas do not take this as full medical advice as this is my own opinion, and stuff I learned in Fetal Alcohol spectrum disorder class.

Some drugs can cause spontaneous miscarriage.
some can cause some body limbs not to grow.
some can cause lung malfunction.
some can cause major organ failure.

A child can be born addicted to drugs, and it will take days or weeks for them to become drug free, and will probably have developmental delays.

FASD, A child born with FASD will always have mental problems, possibly brain damage like my son, that will not go away! People ESPECIALLY DOCTORS do not believe this exists. They say a glass of whine wont hurt you or a glass of beer. Jumping off your roof wont hurt either... making a point here.
the physical act causes the mental defect, I live this life every day, my niece chose to take my sons rights away when she drank pregnant. A child has the right to be born with a sound body and mind. please please remember do not to drink, and discuss and research or call the pharmaceutical company's about medications, also call your local pharmacist, that is their profession and probably know more about a drug then a dr..

[Sbg]

Hi Alidee81,

I just saw your response, I had no idea someone had responded. I am so glad to hear someone else was in the same boat as me. I have felt so alone and your message lifted me up. Gabapentin gave me my life back as well so like you I was and i am Terrified of coming off it. Since my last post I have seen quite a number of specialists and unfortunately they all advises that Gabapentin is unsafe. It's actually more the fact they don't know what will happen so they recommend you come off it. They say it could affect your unborn child's development both in the womb and when they are born. Scary i know. After careful consideration and discussions with my husband I decided to come off it and manage the pain under the guide of my specialists as pain killers are safer to take then Gabapentin. I know it's crazy right. Pain killers only live in our system for a few hours therefore there are limited risks to the fetus.

I was on a really high dose of Gabapentin and I have been coming down 100mg per week. I am down to 500mg from 1200mg. It has been quite difficult some weeks are harder than others. In 6 weeks we can start trying and fingers crossed we fall pregnant quickly. the withdrawals have been difficult and unfortunately my IC has been quite bad but I am getting through it. It's hard but definitely achievable. I never thought I would get so low so I am pretty happy with the progress and I know the end result will make it all worth while.

How are going? I would to here any feedback if you have from the doctors at your end. I know it seems scary but I am over half way now and I can tell you it's achievable just make sure u prepare for some discomfort and come down slowly as this has definitely helped. In saying this everyone is different and this is just my experience.

Good luck. Hopefully u get this message and r able to respond as I would love to yr experiences.

Hope your going well and thanks so much for responding that alone helped me.

[Briza]

sbq I have read studies that show that the drug that you mention prevents the formation of nerve synapses in the brain. This can be a problem particularly during gestation, when the fetus's brain is developing very rapidly. Here's a link to the study:
http://www.wellnessresources.com/studies/neurontin_and_lyrica_are_highly_toxic_to_new_brain_synapses/

Good luck to you. :) I hope you and your doctor find some alternative ways to manage your symptoms.

[Sbg]

Thank you yes i know that's why I am coming off it prior to getting pregnant. Thanks the link though.

[research212]

Hello-
I am new to this board and am hoping that some of my anxieties about my possible IC can be relieved by using this open forum. I've been to so many urologist had a cysto done etc. and two Doctors just told me I had a sensitive bladder and needed to put a heating pad on it or that the burning will just go away, well guess what it hasn't. I've finally found a good doctor but heres a bit of my history. I was pregnant about a year ago and had horrible burning in my urethra and bladder. It started off about 2 weeks before I found out I was pregnant as sharp burning pains similar to feelings of a UTI. I went to the DR and she gave me Cipro, at the time i didn't think i was pregnant so I took it(later to find out its not a safe drug when pregnant). I was then on Macrobid, Ampicillin etc during the pregnancy for it to only end in miscarriage. Ever since this time I have gotten UTI's on and off and then sometimes the test results will show no uti but I have horrible burning. My burning sometimes makes me not want to get out of the house. This burning sensation is so hard to deal with. Does anyone have any natural remedies they can suggest to get rid of this burning sensation? The burning happens after I urinate. I'm not trying to get pregnant again and every time I feel the burning it makes me nervous and I think I have a UTI. It's also hard to try and have a baby when your in this much pain. Has anyone been pregnant and experienced bladder burning, how do you deal with this and get through it? Is this burning feeling a symptom of IC?