IC Medications & Their Use During Pregnancy

[icnmgrjill]

(CAUTION - 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. No patient can guarantee that any medication is safe during pregnancy. - ICN Jill O.)

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In early 2007, Deborah Erickson, MD and Kathleen Propert, ScD have made an astounding contribution to the IC community with their newly released journal article "Pregnancy and IC/PBS" released this year in Urologic Clinics of North America that discusses the use of common IC medications during pregnancy and their potential risk of causing fetal abnormalities.

How are drugs rated?? To disclose the potential safety and/or risk of various medications during pregnancy, the US FDA created a classification system based upon research findings for the medication. Clearly studies on humans that show no fetal risk are ideal whereas studies on animals that show that the medication causes fetal abnormalities suggest that the use of that medication during pregnancy should be carefully considered

The FDA classification system is as follows:

A - Adequate studies on humans have shown no increased risk to the fetus

B - Animal studies showed no increased risk OR animal studies showed an increased risk but other human studies showed no risk

C - No adequate human studies exist. Animal studies show an increased risk or have not been done.

D - Human studies how an increased risk "but the drug can be used if the benefits outweigh the risk"

X - Definite evidence of fetal abnormality exists. Treatments with this rating should NOT be used during pregnancy.

The article discusses the use of most IC therapies and provides an extensive discussion of pros and cons. Pentosan polysulfate (Elmiron) received the highest rating in the group with a "B." Amitryptiline, hydroxyzine and DMSO received "C" ratings.

Intravesical lidocaine (aka rescue instillations) were discussed in depth with the authors suggesting that the "safest choice would be to instilll non-alkalinized lidocaine" to avoid the issue of systemic absorption and placental transfer.

Corticosteroids received a "D" rating if used in the first trimester and a "C" throughout the rest of the pregnancy. These main birth defect seen was cleft lip and/or palate.

The authors further noted that sacral nerve stimulators (aka Interstim) "should not be placed during pregnancy." Patients with existing stimulators should be aware that Medtronic recommends that the device be turned off for the entire pregnancy "because the effects of sacral nerve stimulation on the fetus are completely unknown."

Clearly, the most vulnerable time to the fetus is the first trimester. If you are considering pregnancy and are currently using any of the medications above, we strongly encourage you to locate this article in a local medical library and share its information with your medical care providers.

Erickson D. MD, Propert K. ScD, "Pregnancy and Interstitial Cystitis/Painful Bladder Syndrome" Urol Clin N. Amer 34 (2007) p. 61-69.

Dr. Deborah Erickson is a Professor in the Dept. of Surgery/Urology, University of KY College of Medicine, Chandler Medical Center, 800 Rose St., Room MS-269, Lexington , KY 40536

[sacausa]

Just wanted to add that Cytotec should NEVER be used during pregnancy.

[icnmgrjill]

Cytotec wasn't mentioned in the article probably because it is not considered one of the pivotal IC therapies!

Jill

[meme]

Thanks for the excellent post. It helps so much to be an informed patient!

[melanie626]

IC meds and pregnancy

Hi-
Thanks for the post and literature. I really agree with you Jill in that patients need to discuss their IC with their medical providers. For me, I went to 4 different MD's find out who was willing to work with me and most were on the same page re meds I was on- which helped me in my decision. I had to really be my own advocate and I recommend all IC patients to be frank and get all the risks and benefits for each case.

Of note, cytotec can be used in pregnancy if the benefit outweighs the risk (women who have had transplants and stay on meds have had successfull pregnancies- it may be the same with an IC pt who has never had response to other therapies).

Communication with your provider is the key- Thanks for the post.

Also, UC San Diego pharmacy department has a great tetrogenic hotline if a patient wants more information on a medication and potential harm to a fetus.

Melanie

[melanie626]

Oops

I was thinking cyclosporin, not cytotec, have no idea on that med, but anticipate it might be tetrogenic? SOrry

[aprilchen]

Hi-

Also, UC San Diego pharmacy department has a great tetrogenic hotline if a patient wants more information on a medication and potential harm to a fetus.

Melanie

Melanie,

Do you know the contact information for this center or hotline? I would love to speak to someone about IC, pregnancy and meds. Down here in MS, it seems the doctors and nurses don't even know what IC is and that it can be extremely painful. I hope you were able to read my post about my most recent ER visit for IC intractable pain. I tried everything at home: pain medications, hot bath (though not recommended if your legs are burnt), etc.

Anyway, the short of it is, all of us and our families need to try to create more awareness about IC. It should have "walks" to raise money for research like the American Heart Walks.

I really wish some rich person would sponsor the research on IC and build an organization such as the American Heart Association for Interstitial Cystitis. But, then as women, we are often told that our pain or health issues are all HORMONAL and in our heads.

OK, so how does a fever of 102 and unimaginable pain...like a 12 on the 1-10 scale become something that is, "in your head..."

Suggestions on this one...

[Iris5]

Hi everone -

I was first diagnosed with IC in April 2003, and began taking Elmiron, Pyridium, Detrol, Macrobid, and alternated Flexeril and Vicodin for pain. I also tried antidepressants for pain, but could not take them. Finally, I found relief with meds, physical therapy, pain relief therapy (relaxation therapy), yoga, and switching jobs in 2005.

I gave birth to a healthy baby boy last August. Just before my pregnancy, my daily meds were Elmiron (3 pills a day) and Pyridium 2x a day, along with vicodin or flexeril as needed for pain and macrobid after sex (detrol discontinued). I also did weekly physical therapy with Rhonda Kotarinos (mentioned on this site) and daily relaxation therapy (see the book a Headache in the Pelvis - also on this site). While in remission near Thanksgiving, my husband and I decided to take a chance and try to get pregnant, and were successful on our first try. i figured I survived uncontrolled symptoms for 2 years, so I could do it again for 9 months with the promise of a baby at the end of it.

My gynecologist, who specializes in IC, said the Elmiron and Pyridium were safe, as well as the macrobid for infections. I questioned her about the Elmiron research that said that some babies were born with shortened limbs, but she said that the shortened limbs could be attributed to the way the test was performed, rather than the drug itself. Poking a hole in the amniotic fluid bag was what probably caused the defect, not the drug. She advised me to remain on the Elmiron and Pyridium because they were a class B. My urologist told me to get off the Elmiron because he was not comfortable with the research. Pyridium was also a Class B drug. Vicodin, a narcotic, is absolutely not allowed during pregnancy.

I decided to not take Elmiron. Instead, I took one 200mg pill of Pyridium everyday, stayed on a very strict IC diet, took no prenatal vitamins except folic acid (had to stay away from vitamin C) and kept up the weekly PT and daily relaxation to relieve pain. I also used the old IC home remedy of drinking water with a teaspoon of baking soda everyday. For the most part, I was in remission for most of my pregnancy. I did not seem to be worse off than my other pregnant friends. I think a combination of these therapies, along with the pregnancy hormones kept me in remission during my pregnancy. It is also well documented that many women go into remission during pregnancy. I had a couple of UTI's during my pregnancy, and took macrobid. I also took the last 2 months off of work, so the physical and emotional stress would not set me off.

I began all of my old medications (and did not breastfeed) the day after my delivery. Unfortunately, a few weeks after my delivery (8 weeks -right when my hormone levels returned to normal) I started flaring again. I had to wait a few more weeks for the drugs to kick in, and then I was in remission again. About 4-5 months after delivery, I was okay again. Up until recently, I have been totally fine (stupid spring sets me off every year), and am confident I will go back into remission soon.

Of course, your decision has to be your own. My doctors had conflicting opinions, so I told myself I'd go off the Elmiron and lower my Pyridium dose, but gave myself permission to back on it if I needed to. I was lucky that the hormones put me in remission, and I can only help that each of you would be equally lucky. Hope this helps you all!

[melanie626]

Questions

Iris 5-
Why did they tell you vicodin was an absolute NO for you? I am just curious.

From what I was told, many women take narcotics through out pregnancy and are fine, the issue is trying to take less or none near delivery to prevent fetal withdrawel.

Thanks

[Iris5]

I would do a lot of research on narcotics and their effect in utero before I took it. Through my work, I have seen drug-exposed infants; they have lower birth weights, go through painful withdrawal, may have seizures, and are at a higher risk for SIDS and failure to thrive. Afterwards, they often have developmental delays, and need OT, PT, etc. I would think these delays could be caused by taking narcotics at any time during the pregnancy. Why take the risk of harming your infant?

[aprilchen]

I agree with the part about not wanting to harm your baby, but you can't (or at least I can't) live for nine months with nothing for uncontrolled flares for pain. I have never been able to and I have tried. So, hopefully there will be something you can take that won't be so bad. I will be asking my doctors before Aaron and I even think of having a baby of our own.

[Iris5]

I was very lucky that I stayed in remission during my pregnancy, but I also did a lot of alternative stuff to keep everything in balance, before, during and after. I changed my job, changed my diet, changed the type of underwear I wear and my clothes, changed my medications, changed my sex life, did yoga, accupuncture, physical therapy, and daily relaxation techniques to relieve pain. Even driving a different car (or just riding rather than driving) helped. Also, the hormones from pregnancy itself contributed to my staying in remission. Like I said, part of it was luck, but part of it was hard work. When I first had the onset in 2003, I could barely get out of bed (except to go the bathroom every 30 mins). It took me 2.5 years of doing all of these things to get me into remission; it was hard, but it worked. Almost everything about my life is different now, but it was worth it.

[melanie626]

Pain Meds

Great posts. I think everyone needs to look at the risk/ benefits for themselves. I was just intriqued to see someone say "absolutely no narcotics" when they are given in pregnancy for those who have illness, surgery etc. In my opinion that is a blanket statement that may throw people on the defensive, which is not what people need during an already stressfull time.

I agree research is key but remember, many people who take narcotics during pregnancy are irresponsible/ abuse them and that is what is reported in the literature (How many studies has anyone seen saying "chronic pain patient and pregnancy" vs "Herion and crack addicts and pregnancy"?) I know that the history of things like how the patient took care of themselves in a pregnancy, prenatal care etc are sometimes subject to debate and may be more of the causes of problems infants have, not just the medications. Alot of this you just dont' know due to the lack of controlled studies.

I think most of us do the best we can to live our lifes and manage our IC. Iris it is great you found what worked for you- I have gutted this disease out for over 20 yrs and in the last 2 years it has never been worse despite my maturity and ability to make all the important changes. I am on more meds and feel worse then I ever had. I have seen more MD's, PTs, etc then I ever did before.

My opinion is do what you need to do to get through a pregnancy healthy, both for yourself and your baby. For me, it includes pain meds. I feel educated on the risks, I have talked to 3 OB's, 2 Perinatologists and countless Internal Med MD's I work with. I take only what I need and am hopefully I will need less. The lack of anxiety I have now knowing I can get them if I need them, have support and am not judged by my OB and team has actually helped immensly. I feel more empowered then I have in a long time.

Just my 2 cents. Cheers-

Melanie and Baby B-

[aprilchen]

"I agree research is key but remember, many people who take narcotics during pregnancy are irresponsible/ abuse them and that is what is reported in the literature (How many studies has anyone seen saying "chronic pain patient and pregnancy" vs "Herion and crack addicts and pregnancy"?) I know that the history of things like how the patient took care of themselves in a pregnancy, prenatal care etc are sometimes subject to debate and may be more of the causes of problems infants have, not just the medications. Alot of this you just dont' know due to the lack of controlled studies."

Melanie,

I think you're on to something here. In my Social Work internship, part of it was dealing with neonatals and the mothers who were addicts to much harsher, illegal substances like crack and cocaine. I do agree that less is better, but isn't it true that women are given narcotics by I.V. sometimes when they are in labor?

You're a nurse and I was just asking. All I know is that there wouldn't be any of those controlled studies you're talking about because it would ethically be not a good idea to pursue.

However, my pain specialist says there are meds out there that you CAN take during pregnancy and that won't (in limited amounts) hurt the baby. Why not achieve a balance, period? You know what I mean?

[Iris5]

My post was not meant to scare anyone or insult them. The purpose of my post was merely to share my successful experience and to show alternative methods that I used because I really did not want to take meds during my pregnancy. As I stated, I worked really hard for 2 years trying to get my body in shape for this pregnancy. I was lucky that my hard work paid off - the pregnancy did not have any long-lasting effects on my IC and my body quickly bounced back into remission within a few months. I hope these ideas would work for others as well. If you choose to use narcotics during your pregnancy, that is your choice and you don't have to justify it to anyone here on this site. I really don't know the consequences of taking these drugs, and frankly no one does because it is considered unethical to test these drugs on a pregnant woman.

A good place to start your research would probably be perinatology.com. That is where I checked all of my meds during pregnancy, and it helped make my decision.