Wednesday, February 10, 2010

Rheumatoid Arthritis (RA), Pregnancy and Enbrel

*** This post is part of my Living with Rheumatoid Arthritis series.

What do you want to be when you grow up?

Remember that question? All grown-ups seem to ask it once a child reaches 5 or 6 years old. Do you remember how you answered it?

I do.

I always said I wanted to be a mama. I usually added a few other occupations for good measure - a teacher, a librarian, or Wonder Woman. But these were always in addition to being a mom.

I've mentioned before that in 2000 rheumatoid arthritis was rapidly taking away my energy and the ability to use my hands. I feared how my disease would impact a pregnancy and daily life as a mom.

Well, by 2002 my energy and mobility had greatly improved thanks to Enbrel.  About this same time Joel and I decided it was time for us to add to our family (we'd been married for 5 years).  At that time data on Enbrel and pregnancy was very limited so we followed my rheumatologist's advice and I went off all medication.

About 6 months later, in full flare, I was pregnant.  O happy day!!  Thankfully I did not have a job at this time.  If I had, they would have fired me because I was sick and exhausted, and exhausted and sick, until about 12 weeks.  Around that time the exhaustion lifted (though the nausea hung around for a while longer).

I jokingly tell my husband I would always feel great if I could stay 2nd trimester pregnant all the time (puking is over but I'm not as big as a barn).  That may sound odd until you learn that for most women RA goes into remission (inactive) during pregnancy!

The funny thing is that after the baby's born RA usually rears it's ugly head again.  I'm no exception.  6 weeks after delivery I start feeling the old aches and pains and inflammation again.

With William (my firstborn) I again followed my rheumatologists advice and stopped nursing after 8 weeks so I could go back on Enbrel.  That was one of the hardest things I've ever had to do!  I did NOT want to give up nursing but what good was nursing if I could barely hold him.

We adjusted to life with a baby and about a year later decided to again add to our family.  I knew this time that I could NOT care for an infant and be in a flare (the term for when the disease becomes especially active).  I also knew that Enbrel leaves your body fairly quickly (because it is a live protein). 

So we took a risk.  I stayed on Enbrel until we knew I was pregnant.  I never expected that to be a month later!!  My fatigue was MUCH better this time around because I wasn't in a flare.  Once again my RA went away - until 6 weeks after Ben was born.  With him I managed to breastfeed until about 12 weeks before weaning and going back on Enbrel.

I repeated this story 2 more times - using Enbrel until I had a positive pregnancy test (usually by 6-8 weeks) and then enjoying remission for the remainder of the pregnancy.  And 6 weeks after the baby was born I would feel my RA waking up.

With Ellie and Sam (babies 3 & 4) I managed to stay off Enbrel until they were about 12-16 weeks old.  But, unlike with Will and Ben, I did NOT wean them.  I continued breastfeeding AND took Enbrel.

Let me say here that this was against the official advice of my rheumatologist and the makers of Enbrel.  My story is not intended to be medical advice.  If you are on Enbrel and considering pregnancy/breast feeding consult your doctor for what's best for you.

My understanding is that the data indicates Enbrel in pregnancy and breastfeeding is fine but no scientific research/tests have been done to be conclusive on this.

Ellie weaned herself by 9 months so her exposure was limited.  I nursed Sam until he was 13 months so his exposure was a little longer.  I'll be honest that my mommy guilt sometimes kicks in and I wonder if they will pay for my decision at some point in the future.  But for now they are both healthy and average kids.

So, ten years after my rheumatoid arthritis diagnosis I am living my childhood dream.  I am a mama - 4 times over.  I am also a home school teacher with enough books in my home to qualify me as a librarian.  Now if I could just find a pair of Wonder Woman's bracelets...


Disclaimer: I am not a doctor nor do I pretend to be one on TV. This post is intended to tell my experiences NOT to serve as medical advice. If your symptoms sound similar, please consult a physician.

Disclaimer: I have not been asked by a pharmaceutical company or any related organizations to write these posts. I have not been compensated for these posts in anyway (including money, medication, or medical treatments).

65 comments:

Shannon said...

Stephanie, I am amazed at the power of Google to point me in the direction of your blog! My name is Shannon, I'm 34, and I live in Australia and right now it's almost midnight. I cannot sleep due to the pains in my body from RA, and even though typing is hurting, I just have to respond to you. I am one of those unusual cases where I flare during pregnancy - in fact, I didn't get diagnosed until I was pregnant with my first child in 2005. It took weeks to find out what was wrong with me because all the doctors thought it was something to do with the pregnancy, or that I had contracted some exotic disease! Anyway, I'm now 21 weeks pregnant with my second baby and absolutely thrilled to finally be on this journey again (it took us two years to conceive), but the flares have been unbearable and I'm now taking prednisone... so far it's not helping much, as the dose is quite low, but I'm quite scared of the side effects I experienced with my first pregnancy and reluctant to take a higher dose.
Like you, I had to give up breastfeeding early and it was incredibly traumatic for both me and my daughter at the time. I do not intend to give up BF this time so I'm trying to find out all of my options should I flare badly after the birth. I have never taken Enbrel, but after reading your story I'll definitely be discussing this with my rheumy as a possible option.
Like you, my hands are the worst and I'm finding myself taking more time off work as the weeks go by. Some days I wake up and can barely do anything without causing terrible pain. My daughter is almost four and is incredibly mature and supportive for her age. She can dress herself and get her breakfast now on days where my hands "don't work" (hubby starts work before sunrise so he's not around to help in the mornings) and she helps me with all sorts of basic tasks that I find difficult. I feel a lot of guilt about this, as I'm her Mummy and I should be taking care of her 24/7. I don't think it worries her ... she likes to think she's a "big girl" now who is Mummy's helper, but these little things still get to me.
Sorry for my rambling... but I guess I just wanted to know that I'm no the only mum going through this, and that I feel inspired by you, in that I, too, would love a big family with four children (or more, if we are so blessed!) Thanks for sharing!
Shannon

Amy said...

How encouraging that you're sharing your story and blessing others! I enjoyed the pictures...where's Ellie's? I am not so good with knowing which baby is which from pictures, but I think I got the preganancy pictures right! :)

Carrie said...

Obviously I have nothing of great importance to share. I'm just "getting to know you" a little better here. But I'm thrilled to see that Shannon found your post!

Annette said...

WOW! That is wonderful that you can go into remission during pregnancy!

Isn't it awful that you have to put all the disclaimers!?

Wherever HE Leads We'll Go said...

I love this little bloggy world! How wonderful that your story is inspiring others. I am so glad that you shared.

You just want the bracelets from Wonder Woman? What about the rest of the outfit?

mumsrea said...

I took enbrel whilst breastfeeding my son - duration 12 months. He is now 7.5 and perfect in every way.

My daughter has been breastfeeding for 3.5 years and i have been on enbrel the entire time. She is perfect, and has never, ever been to the doctor for illness.

Enbrel molecule is too large to pass into breastmilk. For the best info, Read medications in mother's milk by dr. Thomas Hale!

Stephanie's Mommy Brain said...

Thanks mumsrea! When I was pregnant with Ellie (#3, 2006) I scoured the internet for info on Enbrel and BF. The dr. is with a university and researches BF and various medications. His info was all I could find. He says that Remicade (which is similar to Enbrel) is too large of a molecule to pass into the milk of an actively nursing mom. BUT (according to his forum) his study only used 3 patients. A 3 person sample is not large enough for the scientific community to accept the medication as safe. That's why Enbrel (and the other biologic) drugs continue to have warnings.

Like I said in the post, breastfeeding while using Enbrel is a risk that each woman (and her husband) need to access for herself. I was willing to take the risk for #3 & #4.

bariatric surgery indianapolis said...

I love this little bloggy world! How wonderful that your story is inspiring others.My daughter has been breastfeeding for 3.5 years and i have been on enbrel the entire time. She is perfect, and has never, ever been to the doctor for illness.I don't think the rest of Wonder Woman's outfit would look too good on me. :)

Anonymous said...

Hi I'm almost 33 and we have been trying to fall pregnant for a few mths. I've been off enbrel six mths and now I am in so much pain I'm beside myself! I'm starting to get a bit depressed and negative which also can't be good ! Im now getting to a point where I'm weighing up is the pain worth it or maybe I'm just not destined to have a baby. Your thoughts?

Vee from australia

Stephanie's Mommy Brain said...

Vee, I'm no doctor so any advice I give is based on my own experience and willing to take a risk with Enbrel. You should know that "officially" you shouldn't take Enbrel while pregnant or nursing, but that's because no one has done any conclusive studies and the manufacturer doesn't want to be sued.

I've had 4 babies. The 1st one I went off Enbrel before getting pregnant - like you. By the time I did get pregnant I was in full flare. The other 3 I stayed on Enbrel until I was pregnant. As soon as the pregnancy test showed positive, I went off Enbrel. There is a lot of anecdotal evidence that Enbrel is safe during pregnancy and nursing.

Only you can decide if you are willing to take the risk. For me, it was worth it. (You should know I've had 4 perfect babies and 1 miscarriage at about 7 weeks, which I think had nothing to do with Enbrel.)

Anonymous said...

I am asking if someone knows if Embrel injections can be spaced to every 10 days instead of the 7 days my doctor has given me. I am going out of the country for 7 weeks and my insurance wont authorize more than 28 days intervals to get the med. I am so afraid of going out of remission! I don't know how to get this other than anonymous as I don't have a Google account. Thanks! acbergh@aol.com

Anonymous said...

Hi
I'm 31 diagnosed w ra since age 25. The only med which worked best for me was embrel. While still on embrel I became pregnant n stopped my injections immediately.....leading to flare ups n hospital visits due to pain n immobility. After doing some research I decided to take Embrel during my 2nd trimester. Once I hit 3rd i stopped n the disease went into remission. I've had 3 ultrasounds along the way and all seem ok. Our baby boy is due in a couple of weeks. I do plan to breastfeed on Embrel myself afterwards as I've read other mommies doing the same and that the protein is too large to pass through breastmilk and even if it does, baby will ingest it n break it down thus not affecting their immune system.
This is what I've been told by research companies n my rheumatologists; However they do caution me that the sample used for these studies are small since it's a new drug. For more info re rheumatism n pregnancy contact Otis in USA. Or motherrisk in Canada

Sara said...

Thanks so much for your story, Stephanie, and thanks to all the experiences shared in the comments. I also have always wanted to be a mama, and would like to have 4 children, so your story is really an inspiration, Stephanie. I am 28, and have had RA since I was 23. Methotrexate and Enbrel together have saved my life. Last year my husband I decided to start getting ready to get pregnant, so I got off of the Mtx in April 2010. We have been trying since October. I have had some mild flares and fatigue without the Mtx (used up my sick days), but it is noooooo where close to pre-treatment. I've kept up with the Enbrel injections while trying to get preggy, but in the back of my head I've been terrified and felt guilty. But now I feel so much better, and not as scared for what kind of pain/fatigue is to come. Based on what I've read here and on other sites I'll continue Enbrel until a positive test, then use it if I have any flares. I am so grateful for the internet to be able to find people in my situation to learn from! Thanks for your help!! (By the way, you'd probably wonder why I don't ask my rheumatologist; I did. He had no clue, called Enbrel to ask, but he still couldn't give me a real answer. So I decided to research myself!)

Stephanie's Mommy Brain said...

Sara, I'm glad my story could help!! The Enbrel people always say NOT to take Enbrel or nurse while pregnant because no scientific studies have been done on it. Which is really a shame! I track the statistics for my blog and receive 5-10 visitors a WEEK from searches for Enbrel, pregnancy, RA or nursing. There are a lot of women out there looking for this information. I wish they would do a study so we could use the medication without guilt!

Good luck getting pregnant! I hope you have those 4 children one day. They are a lot of work but they are also a lot of fun. :)

Anonymous said...

Thank you so much for the great info. I went off Enbrel about a month ago when I decided to start trying to get pregnant. So far my hands and feet have been moderate, but I am exhausted. I am so happy to here that others out there are going thru or have been thru the same things. After reading this I will probably take my Enbrel shots every two weeks until positive pregnancy test. I was so scared to go into the first trimeseter worn out from RA. At 32 with moderate RA I had given up hope of ever having another child. I have an amazing daughter from before RA. This blog gives me so much hope!

Stephanie's Mommy Brain said...

Anonymous, I'm SO glad my story has given you hope!! You are definitely NOT alone in having RA, wanting a baby and needing to know how safe Enbrel is to take. As I've said before, I'm not a doctor and there are NO definitive studies on if Enbrel passes to a baby in utereo or via breast milk. I was a risk I decided to take with my last 2 children and I'm glad I did. Good luck getting pregnant!!

Yan said...

Thanks so much Stephanie for sharing your information with everybody. My husband has psoriatic Arthritis for almost 10 years. He took Methotrexate for a long time. He stopped methotrexate for 4 months before I got pregnant for my daughter. My daughter was born Jan 2007 and she is very healthy, smart. We planned to have another baby. My husband stopped methotrexate this time for 6 months already. But his skin and joints were very bad. So, after checking with doctor, he started Enbrel 3 months ago. His doctor said Enbrel should be safe for pregnancy. And most of the information I got are not much risk if men take Enbrel. But I am still very nervous; I want to ask my husband to stop Enbrel with limited time before I get pregnant.
Stephanie, if you have information about men takes Enbrel? Do you know how long Enbrel will be out from the body?
Thanks.

Stephanie's Mommy Brain said...

Yan, thank you for your comment. It is my honor to share my RA story with others and encourage you!

I have no knowledge or experience with men taking Enbrel. I don't know any men that take it or the other meds related to it.

It would seem to me that if it's relatively safe (though no study has been done to prove that it is safe) for a woman to be pregnant and take Enbrel then it should be safe for the man to take it. Methotrexate is proven to cause miscarriages and horrible things - and stays in your system for months. It scares me. I've never taken it and don't plan to!

My dr. onces said Enbrel is out of your system in 3-4 days. That probably depends on the size of the dose. My dose is 50 mg/mL once a week.

My experience is that dr. won't recommend you take a medication if they think there is a remote possibility of harming a pregnancy. They won't take that risk. My dr. advised me that Enbrel "might" pass into breast milk and made me sign a paper saying she had advised me against nursing and taking Enbrel but I was doing it anyway. Doctors don't want to risk a lawsuit. So if your husband's doc suggested Enbrel he's confident that it will have no affect on a pregnancy.

You might contact Enbrel makers through their website enbrel.com but I can tell you they will probably advise against taking it - again it's that liability issue.

I hope this helps! Good luck with baby #2!! :)

Yan said...

Thanks Stephanie. I went to the pharmacy today with my husband together. I asked the pharmacist for the Enbrel and the pregnant. He told me that Enbrel will only stay in the blood system. That's why it will not a problem at all when men take Enbrel for pregnant. And you are right. Since my husband doctor suggested for it when my husband told him we plan to have second baby, he must be confident for that. My doctor asked me to take PreVit 5 (Folic acid 5mg). I guess it will also reduce some risks.

Your suggestion definitely helps. Thanks for your blog. I am so excited now for the coming pregnancy.

Stephanie's Mommy Brain said...

That's great, Yan!!! I'm so glad I could help you. It's why I share my story and makes me feel that my RA is worth it. :)

Good luck with baby #2!

Dana said...

Hi Stephanie - I just happened to stumble upon your blog post while looking up some unrelated Enbrel information -- and what a blessing! I have been searching for women just like yourself -- because that's where I'm headed! I was diagnosed with RA at 19 and am now 26. I take Enbrel currently (got off Mtx after getting married), and have been trying to think through how to approach pregnancy. After talking with my doctors, we decided the best approach would be to stay on Enbrel until pregnant, then to stop and switch to a low dose of prednisone, if needed, while pregnant (because there are more studies showing its safety for baby). My doctor is not opposed to Enbrel during pregnancy, if needed, though. He also said that it should be safe while breastfeeding (and I've heard several places that the molecules are too large to get into the breast milk)...so he plans on starting me right back on Enbrel immediately after delivery. Sounds like a good plan to me, but I want to know that there are others out there that have done this and have everything work out well...because it is still scary. How amazing that you have had four children! Thank you so much for sharing your experiences. I cannot tell you how much it means to know that others have been in the same place as me.

Rosanna said...

Hi all! I am a 31 year old woman who was diagnosed with JRA at the age of 8. I've been on enbrel now for about 3 years and it has definitely helped me. When I consulted my rheumatologist about getting pregnant she told me to take the enbrel until I have a positive pregnancy test. I followed these directions when I got pregnant in December 2010. I've always been told that when I get pregnant I will go into remission and feel great. However, I went into complete flare and unfortunately had a miscarriage at 10 weeks. My husband and I are trying to conceive again and I decided to go off of all medication while trying to conceive. It has been 2 weeks off of enbrel and I am already moderately flaring. I now have to decide if I want to go on the enbrel again. What an emotional roller coaster this whole process has been! It is very encouraging to hear other women's stories and know that there is hope for me! Thank you for sharing your stories!

melissa said...

I came across your blog and just have to post a comment. I don't have RA, but psoriasis, psoriatic arthritis, and benign joint hypermobility. I took enbrel during the entire duration of my pregnancy with the blessing of my dermatologist and my kids pediatrician. I also took enbrel while I breastfed my daughter for about 9 months. She is almost 6 now, beautiful, healthy and the star of her soccer team ;) A side note however....I am currently on methotrexate and embrel now for my symptoms. Earlier last year my iud failed and I became pregnant. I was referred to a perinatologist who expressed concern obviously about the dangers of the methotrexate but she also acted surprised that I took enbrel while pregnant 6 years ago. She did authorize that I continue a medication I took for concentration that my childrens pediatrician said was not safe for the baby. I ended up miscarrying very early on. But I did want to bring attention to the varying opinions. And tell you that if I was to choose to get pregnant again someday, I would come off my methotrexate for 2x the length of time suggested to be safe yet continue my enbrel. Good luck to you all :)

Stephanie's Mommy Brain said...

Melissa, you highlight some of my biggest frustrations with Enbrel. Because there are no definitive studies the opinions on the risk of Enbrel to a pregnancy and nursing infant vary greatly from doctor to doctor. It all depends on how educated the dr. is on how Enbrel (and similar biologics) work in the body and on the dr's personal opinion of risk. It's frustrating to have one dr. say don't take it while another dr. says it's safe. Makes it hard to know what to do.

Stephanie's Mommy Brain said...

Rosanna, I'm sorry that you miscarried! I also lost a baby at about 8 weeks. You are so right that having children when you have a chronic disease is an emotional roller coaster! Unfortunately not all women go into remission when they are pregnant. I wish you all the best as you try to conceive again!!

Anonymous said...

Hi Stephanie!

Thank you so much for your story and blog! It is very encouraging and helpful! I was diagnosed with Spondylo-Arthritis about 10 years ago. Enbrel has saved my life! I literally can't walk without it!

I went into remission while pregnant and didn't have any need to take Enbrel. Immediately after birth, March 16, 2011, I
flared up. I knew I had no choice, but to go back on Enbrel.

I waited as long as I could to start treatment again. My son is 10 weeks and I had to start. I nursed up until the last minute up until a couple days ago. I have been scouring the web the past couple days trying to make a final decision before my milk supply dries up.

Needless to say, I was thrilled to find your blog and read your story and all the others. I will continue to breastfeed now that I have read your stories. I know it's a risk, but have peace of mind now, thanks to you!

Your information is invaluable. Thank You!!

Stephanie said...

Anonymous, thank you for your comments. I know exactly how your feel. I stopped nursing with my first 2 babies and it was one of the hardest decisions I've made as a mom. This is way I wrote my RA series - to encourage moms like you and help you know you aren't alone. I hope and pray one day a study will be done to scientifically confirm that Enbrel is safe for pregnancies and breastfeeding.

Kelly said...

Thank you Stephanie and all the other mamas who commented here and shared their story. I am a 29yo mother of two beautiful girls 2 and 3. My RA began when my second was 8mos old. It took a few months to diagnose. I was put on prednisone right away which took the symptoms away almost completely. It felt like a bad dream. I am now taking weekly Enbrel injections. I am also on 9mg of prednisone daily (currently) and TRYING to wean from it. I become symptomatic every time a adjust the dosage (even by 1mg). My goal is to get below 7mg bc we want to have one more baby.

A few questions to anyone who can answer...For those who stopped taking Enbrel during pregnancy, when exactly did you stop and did you become symptomatic at all? How many weeks along were you?

Finally, for those who started taking Enbrel just after delivery (or those who never stopped taking it thoughout pregnancy) did you still flare at 4-8wks postpartum?

Thank you!!

Stephanie said...

Hi Kelly, a bad dream is a good description of RA! With my 1st baby I was off Enbrel several month before getting pregnant and was in full flare. With the other babies I stopped taking Enbrel as soon as I had a positive pregnancy test - about 6-8 weeks pregnant. I didn't flare but dealt with normal pregnancy symptoms (vomiting and tiredness).

With all 4 kids I started feeling my RA symptoms about 6 weeks postpartum. With my 1st baby I went back on Enbrel about 10 weeks postpartum, with the others I made it to 3-4 months. The symptoms were there but I toughed it out as long as I felt I could.

Good luck having baby #3!! I've never regretted adding 4 babies to our family and enduring RA/making medication changes to have my babies. :)

Tricia said...

Hi Stephanie!
I just found out today that I'm pregnant with my second child. I have psoriatic arthritis and take weekly Enbrel injections. At the advice of my rheumatologist, I am going to inject throughout my entire pregnancy. He said that he's had several patients (so have several other doctors at his practice) that have chosen to inject throughout their entire pregnancy and all women have had healthy babies. He also went on to tell me that Amgen/Wyeth the company that makes Enbrel almost got it approved as a Class A drug, but backed out due to fear of being sued. If they were going to approve it as a Class A drug they must be very confident that it's safe to take during a pregnancy. My hope is that Enbrel is a drug that doesn't pass to the placenta therefore not affecting the baby. I'm definitely nervous, but I am trying to trust my doctor. I just don't want to be crippled up during my pregnancy. Please, understand that my case is severe. I could barely walk when they finally diagnosed me with psoriatic arthritis. I am hoping for support for my decision. Of course, it's been a difficult decision, but I believe this benefits of taking the medications outweigh the risks. Thanks for sharing your inspiring story!

Anonymous said...

Thank you, Stephanie, and all other moms and moms-to-be for your comments. I'm 33 years old, and was diagnosed with RA about 10 years ago. I took a combination of mtx and enbrel, which worked well for me. WHen my husband and I decided to have a child, and got off mtx 3 months prior to trying to concieve (which we did on the first try), and ot off enbrel as soon as I found out I was pregnant. I'm now 11 weeks. My RA is getting worse every day. My wrists are so inflamed that I have a hard time brushing my teeth and driving. Your post gave me hope and encouraged me to re-visit a possibility of taking enbrel! I also hope that my RA will go into remission some time soon. Thank you again for giving hope for a happier pregnancy journey!

Anonymous said...

Hello Stephanie (and everyone else) My name is Sarah from Sydney Australia. I have had RA since I was 14, and am now 31. I have been thinking about starting a family but have always been so worried about the possibility of not being able to look after the baby (in the past I have been so bad I needed to be assisted showering etc and was bed ridden) even though I have been great since starting Enbrel this is still in my mind.
Has anyone here not been able to look after their baby? Or needed a lot of help?
Does anyone know if people with RA etc are at an even greater risk of birth defects when they get older?
I would also love to know if anyone who uses Enbrel spends the majority of the time sick due to the immune system suppression. I contacted Arthritis Australia and they don't know of anyone having such a reaction. My rheumatologist is the same. I would love to hear.
Stephanie, do you have some sort if relationship with the Pharmaceutical companies? If so it seems a shame to waste all this data about mothers taking enbrel whilst pregnant.
Thank you Stephanie... what an inspiration you are to so many.

Anonymous said...

This message is for Kelly. Along the lines of weaning off Prednisone - I literally took a sharp knife and shaved pills down day by day ( making them look like the different fazes of the moon as I went ) until I had successfully gotten off of it altogether. My doc thought I was a little crazy at first but it worked for me, maybe it will help you too! - S.D.

Anonymous said...

I just wanted to thank you for posting this. I have had severely active RA for almost 3 years now, I was on Methotrexate + Enbrel but about 4 months ago I went off of the Methotrexate to try to conceive. I just found out I am 9 weeks pregnant, I had been on Enbrel until I had a positive pregnancy test. I was fine up until the last week or two and now my hands and fingers and shoulders hurt so bad it makes me want to cry. I have appointments scheduled with both doctors in a couple of weeks. I'm scared that my RA won't go into remission it hasn't done anything but get worse since I stopped taking the medications. I don't want to be chained to my bed for 9+ months and be in so much pain I can't even hold my baby. I wish someone would just come out and say "Enbrel is 100% safe during pregnancy!" Because that would be a dream come true. I'm sure my Rheumatologist will probably put me back on Prednisone which my RA seems to respond to but right now in the "wait" I am just really uneasy and anxious because I am almost scared to be back in that kind of pain, especially being pregnant I don't want to lose my balance or anything.
Thank you again for posting this!

~Mariah~ said...

Hi Stephanie~

I think it's really amazing that you wrote this post at the beginning of 2010 and now it's almost 2012 but the conversation in the comments is still going strong! I think it's probably because there is so little (positive) information out there for women with RA who want to get pregnant.

I think it's really great that you shared your story - and that everyone in the comments shared theirs as well! I hope someday to share my own pregnancy story on my blog too. We're not alone - there are a lot of us!

Take care!
~Mariah~

Stephanie said...

Mariah,

I'm continually amazed at the comments I receive on my RA series. I shared my story because I couldn't find positive information about RA and motherhood online. I figured if I was searching for it, other women probably were too. I had no idea! I receive 5-10 search engine generated visits a week on this post. That's 5-10 women each week looking for information, help and hope. It breaks my heart but also makes me thankful that I wrote this series.

Thanks for sharing today. I hope you can add your pregnancy story in the future! You're so right - we are not alone.

Stephanie said...

Anonymous, I hope your doctors can give you the help you need. I wish with all my heart I could tell you at Enbrel is 100% safe during pregnancy, but I can't. I can tell you that my children (ages 8, 6, 5, 3 right now) have shown no signs of any ill effects from exposure to Enbrel during pregnancy or breastfeeding. And that's the story I'm hearing from lots of women. Good luck and congratulations on your baby!!

Anonymous said...

Hi, I also found this blog searching for info on pregnancy and enbrel. Im from the uk and it seems dr's are strict at sticking to guidelines! I had to take azathaprine. And predisalone during my last pregnancy and breastfeeding. It was planned via IVF- FET. Im now on embrel, after giving up breastfeeding. I am now concidering another FET cycle and im hoping I can continue enbrel through cycle. I did read tonight it may affect the placenta and implantation, but I dont know how ill cope without enbrel! I wish they could study the effects and give us all more peace of mind. Great to read. All your stories, makes me feel less alone in my quest.
Thank you all x susan

Meryl said...

I found this blog after searching "enbrel and pregnancy". I'm so glad I found it! I don't have RA but do have psoriatic arthritis (PA). I originally went on Enbrel 6 years ago. My skin was really bad and my joints were killing me. However, I only used it for 5 mos. the first time and then stopped. My joints went back to being a little sore but not enough for me to go back on it.

Fast forward 2009. It took us awhile to get pregnant. Due to other medical issues, we ended up using infertility drugs and doing IUI. My rheumy said that some women flare up during pregnancy and if that was the case, I could go back on Enbrel. Fortunately for me, I was in remission my whole pregnancy. After 6 weeks of breastfeeding, I could start to feel the joint pain again. Since I was on maternity leave, I figured I could endure the pain until I went back to work, because I wanted to breastfeed my daughter as long as I could. I figured that a month prior to going back to work, I'd stop breastfeeding and start Enbrel again. However, the longer I breastfed her, the more I did not want to stop breastfeeding. So after consulting my perinatologist, Dr. Hale's book, and reading some other women's stories on a different blog, I prayed to God that I wouldn't harm my daughter and breastfed her until she was 7 mos old. (She got frozen breast milk til 8 mos.) I must include that my rheumy told me to stop breastfeeding before I went back on Enbrel. My daughter is 19 mos now. She only got sick once during her first 12 mos and it was only because her cousin lovingly passed on stomach flu to her. Now that she is older, she is getting the typical colds from being exposed to other children. Other than that, she is very healthy and happy!

So after taking the Enbrel for 6-8 mos., I decided to stop it again to see if my body would go back to normal. This time around, it didn't go away and I've been on Enbrel for the last 4 or 5 mos. We are trying to get pregnant again and am seeing an infertility specialist again. Unlike last pregnancy, I didn't go on Enbrel until post partum and breastfeeding. Now I am currently taking it and my infertility doc wants me to stop it while we're trying. At first, I agreed and thought I'll just finish my month's supply then stop re-ordering. But then I decided to look up "Enbrel and pregnancy" to see if anyone had taken it up til a positive preg test. I will still call up my rheumy and ask her advice. I am anticipating taking it until pregnancy, unless my rheumy talks me out of it since infertility drugs are in the equation and I don't know how they affect each other.

And although I am an RN and am normally a compliant pt and an advocate for following medical advice, I just feel very strongly about breastfeeding. I also think I was more vigilant in researching this because my mom only breastfeed me for 4 weeks ( I found this out after having my daughter), and I honestly think that I have the autoimmune disease and other medical issues because I was not breastfed for at least 6 mos. This is all theory, but when I read that breastfeeding can prevent a lot of autoimmune diseases and diabetes, I took the risk so that my daughter will hopefully not have to deal with the same issues I have when she older.

Sorry for the novel...I was just looking for some answers, but felt compelled to share now that I've been on both sides of the fence. Thank you so much for your story Stephanie!!

Meryl from CA

~Mariah~ said...

Hi Stephanie!

It's finally time for me to share my own pregnancy story! I thought you and your readers might appreciate the link: http://fromthispoint-forward.blogspot.com/2011/11/our-thanksgiving.html

Hope all is well with you!

~Mariah~

Stephanie said...

Congratulations Mariah!!! I look forward to reading your story as it unfolds!! :)

Stephanie said...

Meryl, thank you for sharing your experiences!! I think the stories in these comments are much more valuable than my story that they are connected to!! It shows that we are not alone in our fear, pain and frustrations over pregnancy, RA and breastfeeding.

Just to be clear about my experience: I went off for 6 months before conceiving the 1st time. Took Enbrel until a positive pregnancy test at about 8 weeks the 2nd and 3rd time. Miscarried baby number 4 at about 8 weeks - I don't believe Enbrel or RA had anything to do with it. And took enbrel until a positive pregnancy test at about 8 weeks with baby number 5. Because I carried 3 babies with no complications after exposure to Enbrel, I believe my miscarriage was just a regular thing that so many women experience. But, I feel that I should state it again just so you have all of my facts.

Anonymous said...

Hello Stephanie and all the other momas!
here is my story, i've had SPA since the age of 15, I'm 33 now and since then my left hip has ditiriorated and would probably need hip replacment surgery in a few years, so to push back time my doctor finally convienced me to go on enbrel 50mg and so I did and felt much better! before going on enbrel I had my first born at the age of 30 and tried to have another baby, and it took time alot of time so I had to continue to take the enbrel, because I wasent getting pregnant and who knew how long it would take, so I just found out this week that I am pregnant after 3 years trying ! and I was taking enbrel up until last week, even if I have read many blogs saying we should stop enbrel 3 months prior getting pregnant , but like I said I was trying for 3 years I really diden't want to stop, so now I am off we'll have to wait and see how I will be feeling in the next few months! thx everyone for sharing your story!

Stephanie said...

Anonymous, congratulations!!! Thanks for stopping by and sharing your story. I love reading the comments on this post. You all inspire me and inspire others who read but don't comment. Thank you!

Kerry said...

Thank you so much for posting this. I was diagnosed with RA when I was 8 years old, I am now 36 and we have been trying to conceive for almost 5 years. We are now getting some 'help' from doctors and your blog and really helped me not to feel the guilt of remaining on enbrel whilst we do, as well as allowing me to realise that it will be my choice if I chose to breast feed after - if I am blessed and actually conceive that is!

Stephanie said...

Kerry, I'm sorry that you've had to wrestle with RA and infertility! Both of my sisters-in-law struggled with infertility and one of them got "help" from doctors. (I have a spunky 4 yr old niece thanks to that help.)

I'm glad my post gave you hope and confidence. I hope you read the other comments because they are a goldmine of info. and support!

Anonymous said...

Hello everyone! I just found out I'm prenant after using IVF. Yay! I'm excited but I am weary of a miscarriage. I am also new to having a rhematoid arthritis diagnosis and have been taking Enbrel. My husband and I are debating whether to continue it or cease taking it. I wonder about various things. For example, if I stop using Enbrel do I have more of a chance of miscarriage since from what I understand RA makes our bodies attack itself..does that mean it may attack the fetus too? I too have done some research and have heard that Enbrel molecules are too large to pass through a placenta and absorbed through breat milk. I have also seen that many of the reports are survey based and not experimental. Also the population studied have been very small. We need to come together to show greater reports for Enbrel and pregnancy. The OTIS group (Organization of Teratology Information Specialists)is currently doing a study that will assist in proving Enbrel safe. You can all sign up to be a part of the study. They even send a specialist to do a full exam of the newborn at no cost. The California OTIS group is doing the study. Here's the website to check out http://www.otispregnancy.org/ and call them if you want information or even want to be a part of the ongoing study.

Stephanie said...

Anonymous,

Congratulations on your baby!!! A new baby is so exciting!

My understanding is that RA attacks the lining of our joints. A baby is completely different. The cells that are attacking your joints cannot get to the baby. And because the placenta is a different tissue from the lining of our joints, I don't believe those cells would attack the placenta.

I'm not a doctor, nurse or pharmacist but that's my understanding of how things work. Also, I have never heard that having RA increases your chances of a miscarriage. You should definitely talk with your RHEUMATOLOGIST (NOT your OB/Gyn, they aren't specialists in RA)about your concerns.

You are right that there is no solid scientific data on Enbrel and pregnancy. If you are pregnant or nursing I think participating in a study is a great idea! I couldn't find any in my area when I was pregnant/nursing.

Vanessa said...

I was diagnosed with RA almost 12 years ago and have been on Enbrel for over 8 years. When I got pregnant with my first baby 4 years ago my rheumatologist told me to go off Enbrel but my OB didn't think I needed to, kind of frustrating. I decided to keep taking it until the third trimester because then my OB advised me to stop taking it at that time if I wanted to breast feed, which I did. I am not lucky enough to go into remission during pregnancy so it was a painful few months and I remember even having a bad shoulder flare while in labor, way fun. Anyway, I breast fed my baby for 3 months and the flares got too bad and I stopped so I could go back on Enbrel, it broke my heart. I just had my second baby in January, this time I only needed to take Enbrel once a month to control the flares, but it's been just over 6 weeks since he was born and the flares are getting bad. This time, my rheumatologist actually told me to go ahead and take the Enbrel as needed because he had discussed with other doctors whether Enbrel was safe and they felt like it was. I am just starting up again today and will continue nursing, but I am a little anxious. I came here looking for a little more reassurance I guess. :)

Nomi said...

Hi, I've had ra since 2007, mine got pretty severe couple of times, been on mtx and enbrel and worked great for me, after I weaned myself off of mtx, which was about 6 months ago, I got pregnant while on enbrel, cause my doc let me. I am 9 weeks now, first child, very excited, I've started a flare up 3 days ago, last night cuoldnt sleep, cause shoulders ache. I am wondering about when does most women see a remission during their pregnancy, cause if I have to wait a month or two, I want to do that instead of being on enbrel. I am going to see my rheumy next week, but also i am going to see my hubby's teacher, cause he is both western doc(pathologist)(hubby said he is A doctor's doctor)also he is chinese medecine doctor. I also read barbara allen's book, and i usually play with diets and diet diary. Also I fast few days during minor flares. But it is impossible to fast during pregnancy now, I am always hungry, esp in the evenings. Does anybody know if they tried to eliminate particular food to ease their ra? I just started to eliminate wheat, of course i never eat processed food, dairy, nightshade veggies,sugar anyways. Lately I've been bad and eating eggs and wheat a lot, i don't know if it was related to that. So as of now I am only eating veggies that are not nightshade, usually steam them, turkey and lamb, apple, coconut milk, lots of water.

excuse my writing cause english is not my native tongue. THanks:)

Stephanie said...

Nomi, congratulations on your pregnancy!!! I think pregnancy induced remission usually occurs by the 2nd trimester - about 12 weeks. I haven't tried eliminating foods to find an RA connection - although I have noticed stiffness after drinking sodas so I usually avoid carbonated beverages.

Have you spoken with a rheumy about fasting during a flare? That doesn't sound like a good idea to me. When your body is weakest and your immune system is on high alert, you don't want to make it weaker by depriving nutrition and fuel. I'm not a dr. but I think you should discuss that with one.

I always felt hungriest during a pregnancy at night. Your body needs the extra calories right now. You might try peanut butter on graham crackers as a pre-bed snack. Or peanut butter on apple wedges.

Good luck with your new baby!! I'm sorry I don't have more info for you. :)

Stephanie said...

Vanessa, I hope you are feeling better and feel reassured about taking Enbrel. I'm not a doctor but I took enbrel while nursing as did several other women who've commented here. I think it's great that doctors are agreeing Enbrel is ok to take while nursing. That's very encouraging.

Anonymous said...

Thank you Stephanie for your reply, it is comforting to know that I am not by myself in this 'business'. I talked to my husband's teacher, and I do value his opinion more than my doctors, he said to hold off my enbrel or any other medicine at least first three months. I am two mo s now. So its been three days since I eliminated my wheat, corn, eggs, and my toes weren't sore this morning as I carefully stepped out of my bed with great hesitation. Also first thing in the morning I always make a fist with my hand as a good morning greeting to myself(checking my soreness)there were no alarming pain. And the best of it all, my shoulders didn't hurt all night at all, yet three days ago my shoulder pain started around 11pm and continued till 5 am, I didn't sleep at all. So I am in a happy place today compare to crying at night. I have been eating steamed veggies, lil bit rice, chicken, water. I bought a gluten free cookie made with brown rice flour today to munch on before bed time. I think we all should observe our body how we react with certain food. I guess I am just way to stubborn to settle with what doctors give me, and I've had bad flare ups so many times because I refused to take treatments. However, this year I feel like the question I had been asking for a long time from many docs whom never had on for me, I found it with my chinese medicine doctors and my diet experiments. I feel for all of you ladies.

Anonymous said...

Hello Everyone!

I just want to thank Stephanie for making it possible for all these woman and myself to share our stories. I have Ankylosing Spondylitis (AS) and was diagnosed at age 23, right after my daughter turned 1 years old. I've been taking Enbrel for 3 years now and my husband and I have been talking about having another baby. I was a bit hesitant because my first pregnancy was very hard and I was in constant pain. Since AS is an inflammatory disease, I could barely walk at times because it was very painful. Anyone with AS knows its hard to even breath sometimes. However, the joy of having another child brought me to do some research about Enbrel and Pregnancy and I am so thankful to find this blog! I feel very optimistic now! I will definitely keep all of you updated on my progress. Thanks again Stephanie!!

Stephanie said...

Anonymous, I'm so glad you found this post and the comments encouraging!! Definitely come back and update us when you are pregnant/have another baby!! :D

Anonymous said...

Hi! I'm 18 years young and do not have any children yet but i do know that somewhere in my future i woulf love kids. Your blog has helped me a lot and had put my mind at ease with all of the worries i have had. I wad diagnosed with RA at 2 years old and have always dreamed of having kids. Your story has truly given me hope :)

Cheryl said...

I am 31 yo mother of one researching how to go about pregnancy and bf with ra. So glad I found this page as it is the first time I feel like I might be able to bf. after the birth of my daughter I was told I'd have to give up bf to take mtx. Which is correct but hopefully will be onenbrel or similar biologicals soon to enable bf when we next conceive xx

Stephanie said...

I'm so glad that this post and comments is giving women hope for pregnancy and breastfeeding.

Just to be clear you can NOT take methotrexate while pregnant or breastfeeding. It is known to cause miscarriages and birth defects.

Best wishes as you grow your families!!

Kekoa said...

I came across this blog whilst trying to find any information about Enbrel and pregnancy. I've had RA since I was a little girl and I'm now in my mid 30's. I'm starting to worry that time is running out for me and my partner to start a family. I came off methotrexate 18 months ago (in preparation) but I still take Enbrel injections twice a week. We haven’t tried for a baby yet as we wanted to wait till after our wedding in October. I've asked my consultant for advice about Enbrel and pregnancy but the only thing I was told is that there is little research on the topic and if I choose to stay with Enbrel, they want me to sign an official declaration that they didn't advise me! I felt downhearted as I went there for advice and I felt like they were more concerned with watching their backs in case I sued them, I felt a little intimidated to be honest! They were no help what-so-ever.
Can I ask, did you take painkillers during your conception and during the pregnancy yourself, or did you go cold turkey on all meds?

Jo said...

Thanks for posting this. I now know I"m not the only one who continued with Enbrel throughout pregnancy and breastfeeding. I"m now pregnant with my second and am excited to know my first is very healthy and glad to know your children are healthy too! Love to connect more. www.mommywihtra.blogspot.com

Carie said...

Hi Stephanie!
Thank you so much for this blog(and to everyone else that has posted)!
My husband and I started planning to get pregnant last year, but last December I was diagnosed with RA (I have had pain/ swelling and fatigue for 5+ years, but finally found a doctor that listened), and my husband was diagnosed with PsA one month later, he is now on Remicade, and I have tried several things, except mtx since rheumy knew I wanted to get pregnant. I went on Enbrel, and it was starting to work, but the injector pen was causing really painful site reaction, rheumy decided to put me on Humira, I've been on it last several months, but it hasn't helped, my fingers and feet have gotten worse, and I started having large (6-9in) site reactions. So, I'm back on Enbrel now, but the reconstituted vial I mix myself, because the site reaction chance is less. So far I've had small reactions that don't hurt or itch, and its starting to help again (only two treatments, but I can bend my index finger!).
Now we're wanting to try to get pregnant again, my obgyn is very supportive, and as had other RA patients, none that have been on biologics though, so she had me talk to my rheumy, and she wants me to stay on the Enbrel until I have a positive pregnancy test(and I really trust my rheumy, she has RA and takes Enbrel also), but I've been very worried about it since I hadn't been able to find any info of how it has affected pregnancy or the child afterwards, until now. And I know everyone is different, but its so encouraging to hear all these experiences and have an idea of what to expect. Sorry for the rambling!;). But I want to thank you so much for sharing your experience, it has really helped me!
Best wishes to you and your family!

John said...

From a husband whose wife has RA -- wanted to say thanks for the blog post Stephanie and thanks to all of those who have commented thus far.

Our story -- my wife was diagnosed with RA after our 2nd baby 3 years ago. She is now 21 weeks pregnant with our 3rd and has flared badly this entire pregnancy. Like many of you, she's had countless sleepless nights and shed many tears due to the pain and guilt. She struggled through the first 12 weeks and managed to stay off all meds but has since taken Enbrel. So far she's taken 3 shots and will be taking more as needed. Her RA doc will only say that she recommends taking as little of any drug as possible during pregnancy -- not exactly a guilt-eraser, right? I have scoured the internet looking for any info I can find with Enbrel and pregnancy to put our minds at ease so needless to say we are both grateful to read the posts on this blog.

Anyhow -- according to the 20 week ultrasound so far so good. We will post again in hopes of easing others minds they way you have eased ours.

Stephanie Kay said...

Update August 30, 2013:

In May 2013 I gave birth to my 5th child. Like with the others, as soon as I knew I was pregnant (about 8 weeks) I stopped taking Enbrel. My RA went into remission while pregnant and reactivated about 6 weeks after delivery. I began taking Enbrel again around 10 weeks after delivery (my dr. retired suddenly so finding new dr. and setting up Enbrel delivery took time).

I am continuing to breastfeed and plan to do so until Matthew is a year old. My new rheumatologist agrees that even if Enbrel passes into my milk the live protein is killed by Matthew's digestive system and passed safely out. She feels it's safe for him.

Thank you to everyone who continues to visit and comment on this post. I have moved to a new blog (www.everydayfamilyliving.com) but have left SMB intact because of this series. Thank you for sharing your experiences and helping each other!!

John said...

Update to my earlier post (June 26, 2013 at 11:43 PM).

Hello again.

I'm back to provide an update for those mothers out there struggling with RA, pregnancy, and Enbrel.

I have great news to report. Our baby boy was born Oct 25th at 1:43 a.m. EST weighing in at 8 lbs 10 ounces. He's 18 inches long. He came two weeks early (38+ weeks) but so far he's healthy and doing great.

My wife was one of those where her RA actually got worse during pregnancy and she struggled with the pain and guilt throughout. I want to post what she took to hopefully help ease the minds of other mothers-to-be out there in similar situations.

1st trimester:
She started to flare badly around 8 weeks -- mostly in her knees. She refused to take anything other than tylenol in this trimester and spent a lot of nights in the bath tub whirlpool and/or icing or heat pad. She did this b/c of the documented risk of clef pallet with prednisone.

2nd trimester:
She started with 5mg of prednisone as needed but that didn't put a dent in her RA flare with her knees. After consulting with the RA and OBGYN docs -- we then chose to take Enbrel even though we got the standard "it's a category B drug which should be safe but there isn't a lot of testing out there so no guarantees" talk. She took 4 shots of Enbrel during this trimester and it helped initially but it wore off pretty quick. What really helped her was getting shots of cortisone directly into her knees. She got two shot in left and right knees spread out in this trimester. These were given about a month apart.

3rd trimester:
She took one more shot of Enbrel and she got an additional shot of cortisone in her left knee. This pretty much took care of her knee flares but then she started to flare in her neck of all places. From here out she took 5mg of prednisone as needed. She also did 40mg for 5 days straight for a severe respiratory infection. Strangely, the last 6 weeks in this trimester were relative pain-free and she didn't need any additional medication for her RA.

As you can see, she was all over the map and for her it was the guilt of taking any drugs that really hurt the most. No mommy wants to harm their baby. But at some point something has to be done about the pain so this is the path we chose.

I hope this helps some RA mothers out there as your posts have helped us. Just remember during those long painful nights that you aren't alone out there and that everything will be okay in the end!

John

Stephanie Kay said...

Thank you for updating us, John! And CONGRATULATIONS on your little guy!! Soak in that "new baby smell" while it lasts. :)

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