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Author Topic: Breastfeeding while on Enbrel?  (Read 13534 times)
kaaust
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« on: May 12, 2008, 09:16:33 PM »

Anyone bf and taking Enbrel?  I am 29 weeks pregnant now and have been taking Enbrel for the duration of the pregnancy.  I want to BF again but seem to find mixed messages on Enbrel and BFing.  Anyone have any info?
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sidolem
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« Reply #1 on: May 15, 2008, 08:18:39 AM »

I am breastfeeding and am going through a horrible flare up. My daughter just turned 3 months. I told my doc that I had done some rearch and saw there are mothers taking enbrel and breastfeeding. He spoke with their drug rep. and she didn't recommend it. He wants me to stop breastfeeding before I begin to take enbrel. I still don't know what to do. I'm sure this doesn't help but thought I'd let you know my experience. My rheumy also suggested taking prendisone along with antiinflammatories while breastfeeding. The prendisone makes me gain weight. I already have excess weight from the pregnancy that' sbothering my joints. Taking the prendisone would add insult to injury with excess weight on the joints.
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cavansmom
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« Reply #2 on: May 16, 2008, 07:30:36 AM »

Hi Sidolem,

Welcome to the site.  It sounds like you have a good rheumy who is nice enough to at least call those drug reps!  That's hard to find!  I breastfed on Enbrel, although I also got mixed answers to the safety.  The thing that made the most sense to me was the fact that we have to inject it, as passing it through the digestive system kills Enbrel.  Therefore, supposedly, the baby's stomach would do the same thing with the breastmilk.  Just the same, obviously there is big risk as nothing is known for certain.  I only breastfed for 4 1/2 months as I truly believe that breastfeeding was causing my flare.  I did feel better when I stopped, but still not back to normal.  Since then I also developed thyroid (high) disease, had my thyroid radiated, and now take thyroid supplement.  It is still not completely under control yet.  My son has health issues also, but I don't think they are related to the Enbrel (which I also stayed on during my pregnancy).  I had very similar issues when I was his age (wheezing/reactive airway disease/likely to be asthma diagnosis at some point).

It's been nice to hear your story and interesting that you've been able to control your ra with diet.  I've tried similar things many times.  Usually they help, but not enough.  I'd love to hear more!

Take care!

Lori
MomsWithRA.org
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kaaust
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« Reply #3 on: June 19, 2008, 07:45:09 AM »

Hi Lori,

I just saw your other reply post to another member and I wanted to pick your brain.  I started this thread a month ago confused.  Went to my rheumy today who basically called Amgen (makers of Enbrel) who said no breastfeeding.  Well, of course they will say that as the drug company as they don't want to be sued.  He said there was one study of a woman who was not bfing but pumping and she had enbrel in her milk and the company cannot be sure that digestive enzymes will break it up or if the baby will get it systemically.  He said from his persepective he can't imagine what the drug would do to an infant in such small amounts...but in the same respect its only 10 years old, no data and who knows of long term effects.  So he left it up to me.  He said either stop the Enbrel now and see how long I can BF until I flare up, or BF on the Enbrel but take the chance. 

So I'm conflicted.  I read from Dr. Thomas Hale that this woman mentioned in the study above was actually pumping a month after her birth but hadn't been...so her alveolar processes had broken down and he basically said "anything coudl be in such a breast".  So it sounds to me that this one case study is extremely inconclusive to telling all moms to stop Bfing. 

I dn't want to take the risk of hurting the baby.  I did take the drug in pg and was taking it up to today.  I am going to stop now since I'm 34 weeks and then resume when I flare which I assume also will be 4 to 6 weeks.  How long ago did you BF on Enbrel?  Have you met other moms who have also?  I knwo there are never any guarantees....I just need to find more info.  Sometimes because studies are so limited, doctors will just blanketly say "stop breastfeeding".  I'm determined.  I can't imagine not Bfing my son.  I do want to do it at LEAST for a few months.  Heck, if I could make it to 5 or 6 months I would be happy.  I did bf my first son when Diagnosed with RA for a year.  I was taking pred, Azulfidine and Plaquenil then though.  I asked him about going back on those drugs but he said they would again take 4 months to work...and honestly  my quality of life then was poor. 

Any thoughts to offer?
Thanks.
Kathryn
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cavansmom
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« Reply #4 on: June 22, 2008, 08:52:11 AM »

Hi Kathryn,

Sounds like you've done a lot of research!  You know, of course, that I'm not a doctor and can't tell you what to do.  Here is, however, my thoughts when I was going through all of this (my son is currently 2 1/2).  I'll also tell you my current thoughts.

I really wanted to breastfeed.  I felt it was important.  My mom did not breastfeed me, but she did breastfeed my brother.  I have 4 autoimmune diseases and my brother has none.  I always questioned breastfeeding as a factor, although my mom also smoked with me and not my brother too.  It's probably all just dumb luck.

Anyway, my rheumy at the time said that I woudn't flare as I stayed on Enbrel (her only patient to do so).  So I was thinking I wouldn't have a flare after my son was born, but knew it to be a possibility.  I talked to my rheumy, my ob, my son's pediatrician (before he was born), and my rheumy spoke to an Amgen researcher.  Nobody had a really good opinion.  Here was the best info I got (via the researcher).  He FELT that the Enbrel could be in the breastmilk, but that it would likely be killed off by baby when digested.  His big concerns were around what Enbrel did to the breastmilk (killed off the stuff that makes it so good for babies).  He recommended going off Enbrel at least 8 days before delivering so my cholostrum (sp?) antibodies wouldn't be killed off.  That is what I did.  I started the Enbrel back up about 3 days after my son was born.  I breastfed for 4 1/2 months, and guilty as I felt, stopped in the hopes of feeling better, as I couldn't even take care of myself let alone a baby.

So, with the info I had at the time, that was what I did.  Here is the reality.  My son was sick ALL the time as a baby.  I do worry that Enbrel was to blame, although I kind of doubt it.  I don't see that breastfeeding helped him though (maybe it did, but I gotta tell you.... he had pneumonia and bronchiolitis about every week as a baby).  The flare-up I had is still lasting (now 2 1/2 years later, I STILL have milk that will not dry up).   I feel more guilty about taking away a strong able-bodied mommy from him (especially now that he's a toddler and into everything) than I did about stopping breastfeeding so early.  If I had it to do over, I think I wouldn't have breastfed at all.

I hope that's helpful, although probably giving you even more conflictions than before!  Let me know how it goes.  I agree that one study sounds wishy washy, and ya gotta have a rheumy that can analyze its appropriateness!  Please let me know what you decide.  Your story would make a great one for the Mother's Stories a few months down the road!

Take care!

Lori
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longbeachmom
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« Reply #5 on: July 29, 2008, 09:15:34 PM »

Hi there,
I'm 8 months pregnant.  I called my rheumatologist and asked him about enbrel and breastfeeding.  He said it is fine.  So I'm planning on breastfeeding as soon as the baby is born.  I've been taking 25 ml twice a week my entire pregnancy.  I got bad flare ups the first and second trimester.  I've been feeling great the last two months.  I will continue with enbrel to avoid flare ups after the delivery.
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cavansmom
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« Reply #6 on: July 30, 2008, 03:35:56 PM »

Hi Longbeachmom!

Welcome to MomsWithRA!  So glad to meet a fellow mom who has taken the same course of treatment I did!  I do have to warn you though (I continued Enbrel through my pregnancy and breastfeeding)... I still had a terrible flare-up.  It's been 2 1/2 years since my son was born, and just within the last month or two am getting back to normal.  I'm not saying this to scare you, but you may want to prepare (maybe get extra help) in case you do flare (usually 4-6 weeks after birth).  I would love you hear how you do, and I'm sure there are a lot of other moms on here who would like to hear your story!  Please write again!

Lori
MomsWithRA.org
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kaaust
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« Reply #7 on: August 12, 2008, 11:11:07 AM »

Hi Lori.

Thanks for all your info!  I'm pretty big on bfing too.  I BF my first son until he was a year old.  I was diagnosed with RA back when he was 6 months old and my rheuimy was so supportive then.....but I also wasn't on enbrel.  Now he's being wishy washy with me and its greatly making me upset.  We keep going back and forth emailing each other and I'm ready to just LIE to him and tell him I stopped Bfing.  I mean, ultimately its my choice right?  Who the hell is he to decide what I do with regards to bfing?  So I'm half tempted to lie to him if he gives me any more grief. 
I had my son about 3 weeks ago.  I haven't had a flare yet but I've started noticing discomfort in my joints....same bad ones.  So its a matter of time.  I have enough enbrel to just restart it myself.  I did stop it about a month before delivery to save the colostrum.  My rheumy at the time wanted me to not restart it until I felt bad....as bfing was an issue.  Again, as I email him to tell him that I want to restart it, his reply was "did you stop bfing yet as that could be an issue?".  I just want to scream.  I took Enbrel for 8 months of my pregnancy.  I've talked to lactation consultants who say that Thomas Hale (the breastfeeding and drug guru) has said Enbrel is okay in bfing.  And generally, when you can take a drug in pg, you can take it when bfing too. 

Now, believe it or not, my first son was sick all the time too....and I NEVER took enbrel then.  He was sick every 2 to 3 weeks.  It was horrible.  It got worse AFTER I stopped bfing him at 12 months old to go on harder RA drugs.  Honestly, I don't think the Enbrel and your son's illnesses are related.  He was in daycare so that is enough said.  But no, we can never truly know.  Its just odd b/c my son was literally sick all the time too.....but again, I was only taking prednisone back then and he didn't really get sick when I was on the pred...he got sick when I stoped bfing.  Very sick...all the time.  It was miserable. 

Well, I will definitely post what my rheumy says.  I hope to hear from him tonight or tomorrow.  I really just want to restart my enbrel.  I'm thinking it would be a bad idea to wait until a flare occurs....but what do I know?
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kaaust
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« Reply #8 on: August 12, 2008, 11:13:40 AM »

Did you have your baby yet?  Sounds liike we were due around the same time.  My son is 3 weeks old now.  My rheumy is giving me trouble on my Enbrel and bfing.  so much so that I will either lie to him about it or I'm going to have to find a new rheumy....but honestly its like a 4 month wait to get into a practice around here.  Plus, I've always loved my rheumy.....we just aren't seeing eye to eye right now.  Generally if you can take a drug in pregnancy than it is okay during breastfeeding too.  I even contacted a lactation consultant who looked it up in Hale's book and said its fine.  I'm getting frustrated that a doctor would take the word of a pharmaceutical company.  Of course they don't want to be sued so that is why they take their "no bfing" stance.
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cavansmom
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« Reply #9 on: August 12, 2008, 05:21:35 PM »

Hi Kathryn,

The breastfeeding thing is so complicated, it's crazy.  I got the same run around too.  I had to get firm with my wishes with my rheumy and take her the research I had done.  Somehow she was then ok with it, but our styles didn't mesh in general, so I got a new rheumy.  I like choices and options.  This woman was a real old fashioned... prednisone only, stop all meds 3-6 months before TTC, have all your children back-to-back without going back on meds type of gal.

I certainly don't want to take any unnecessary chances when it comes to my son's health, but my health as his mom was important too.  It's a fine line.  I tried to be as honest as I could with my rheumy, but I cried a lot.... I don't need the stand-off stuff, especially when it took 3 months to get into see her.  Ug.

Keep us up-to-date! 

Lori
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kaaust
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« Reply #10 on: August 19, 2008, 08:44:48 AM »

It is very frustrating.  I know what you mean about your health too though....because of being on prednisone I developed prediabetes.  Then went on to gestational diabetes with this pregnancy as a result.  So now I am on a fine line of hoping to get the prediabetes under control and not go into full blown type 2 diabetes.  YET, my rheumy still recommends prednisone.  I won't take it.  Why?  It is not obviously good for ME.

I have talked to my rheumy since I last posted.  He's basically ignoring me and its pissing me off.  He's answered my emails but is basically not REALLY answering them.  He's not returning calls and just one sentence answering my emails as if he is ignoring the fact that I am telling him I want ot breastfeed and take the enbrel.  His email answers are so generic and blase that it almost seems he is posturing himself against me in case of a lawsuit.  I almost have to laugh at it.  I mean, if he wants it in writing that I won't sue him, he can have it.  Its my choice.  But I can't help but thinking "what an a$$".  Makes me want to pick up and leave the practice.  Very disappointing.  Ihave my next appt in one month.  I can't WAIT to see him.  I fully intend to ask him why he's been igonring me.  But bottom line is, I intend to keep it civil and just go with teh flow to get my prescription...and then I'll move on.  Next rheumy I get won't even know that I'm bfing.  Why bother telling him/her?  Its my choice and I've done the research. 

I did start taking the Enbrel again last week.  I started mildly flaring and didn't want to have a full flare.  I tried to contact my rheumy to get an snwer on how to start it again as he told me months ago that I couldn't just RESTART it on my own.  Well, 6 days later I still have no answer from him.  Again, he's ignoring me.  So I just restarted it.  I can't see why I can't just restart it.  I mean, I'm taking it how i did when I started it originally.  I think he just wanted to make an appt with me to get another bill in there...if you want my opinion.
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cavansmom
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« Reply #11 on: August 21, 2008, 10:27:45 PM »

Hi Kathryn,

Well, I dare say the prednisone push is probably because you're pregnant, and supposedly prednisone won't hurt the baby (I have to say I have my doubts on that though).

Very interesting on the restart stuff... I haven't heard of any restart plans from anybody I can recall.  I think there may be concerns about the baby's growth at certain points when taking Enbrel, but I don't even think I've heard anything "official" on that.

I hope your chat goes well when you have your appt.  With me, I was trying to keep my cool with my rheumy until after Cavan was born, then I changed.  I always though it interesting that my blood pressure was 10-15 points higher at the rheumy's office than at the OB's.  Can we say STRESS?

Take care!  Be well, and keep in touch.

Lori
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willowsmama
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« Reply #12 on: August 21, 2008, 11:17:10 PM »

Hi there,
Here's my two cents on enbrel and bf.  I support it, and I also will be starting this week.  I'm very excited.  Here's my research/info.
Before pregnancy, I spoke with my rheumy.  He is very involved with the research on enbrel and bf, he gave it a thumbs up with no hesitation for both preg and bf.  I got pregnant, went into remission, so it was not necesarry.  My daughter is now 14 months, still bf, we have no intention of stopping anytime soon.  My ra has just recently started flaring again, and I decided its time to get on some meds. I had to go see a new rheumy, due to insurance change.  I like her a lot, she's great.  However, at the first appt she was against enbrel (or really anything but prednisone) while bf.  She told me I needed to wean Willow, and very soon.  She's very concerned about the damage to my joints, maybe moreso than I am.  So I left, thought about it that week, kinda tried to cut back on bf, but my instinct told me no, listen to my heart, its not necessary.  I went and saw a great pediatrician, told her my story, and that I am pro bf and believe that often the risk of meds + bf is often less than the risk of weaning; that I thought my daughter may benefit more from continuing to bf despite my meds, but that I wanted an opinion on enbrel specifically.  She agreed wholeheartedly with me- she also supports the World Health Org's recommendation to bf for at least the first two years.   So, my pediatrician is a rockstar- she spoke with my rheumy, and got the full scoop.  Then she spoke with Dr Hale (BF/Meds guru) who also gave enbrel a thumbs up, no hesitation.  She spoke with another top lactation guy, same story.  Can't remember his name.  She told me to go online to Dr Hale's site.  I recommend doing a search for 'Dr Hales Breastfeeding and Medications Forum' - you can read his forums with physicians regarding all the anti-arthritic drugs.  Another site to visit is the Toxnet LactMed library, do a search at that site for enbrel and it will give you the research data. Note that this site does site a study of the woman who was nolonger bf but still had milk, and they found levels of enbrel in her milk.  As Dr Hale explains, the alveolar barriers break down without an actively sucking child...  but on Lactmed, they basically say that even if it got into the milk, adverse affects would be unlikely, esp in infants over 1 month old. 

I brought this research back to my rheumy, she listened and said okay, sounds like you've done your research, and she wrote me out a prescription for enbrel.  Yippee!  The last few weeks I did go on pred, but we'll stop that once the enbrel kicks in.   

So, I'm picking up my prescription at the pharmacy Monday and getting started.  I feel totally fine about it.  I would be very interested in knowing, if anyone knows, is there a registry for bf moms on enbrel?  If so I'd like to be a part of it so we can get some more research on this done for other mamas!  Maybe I'll call Amgen (the makers of enbrel)  next week and ask them.   

I'd like to follow how your baby does Kathryn, and anyone else doing this, if there is any concerns, etc that arise.  I suppose my one thought is that if any does get into my milk, maybe Willow's immune system may be slightly suppressed?  I spoke with my rheumy about this, she didn't seem concerned about it.  But I think I may do some herbal immune support supplements for her.  Can't hurt, right?  Specially with winter coming soon, it snowed where I am a couple days ago.  Already.  I guess my one concern with bf + enbrel might be on vaccines.  Dr Hale doesn't think its a reason to refrain from vaccines.  I suppose my concern would be on live vaccines.  If my baby's immune system is possibly slightly compromised, I don't know that I'd put that in her body to tax it.  They are still some live vaccines right?  We don't do any vaccines so I'm not too up to date on it.   

Kathryn, what state are you in?  If Colorado, I could recommend a few good rheumys since you're having such a hard time with yours. 

Good luck to you all-
Sheena   
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Tammy
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« Reply #13 on: August 25, 2008, 09:49:31 AM »

Hi all,

My stand on breastfeeding is a little different.  I breastfed my first while taking no meds and became so sick I was walking with a cane (when I could walk), taking pain killers, etc...it took 6 months to get back on track.  I truly believe the breastfeeding increased the severity of my flare.  I did not breastfeed my next two children...I felt it was far more important for me to be able to care for them both now and in the future.  They are both perfectly happy and healthy.  I could have breastfed while on Enbrel, but it was not a risk I was willing to take for my child or myself.  I, of course, felt some guilt about it, but I definitely think it was the best decision for my family.  My flare after my first was VERY SEVERE though...if it had not been so awful, I may have made a different decision.  I couldn't even be alone with my daughter for 2 months because I could not lift/hold her.  It's also interesting for me to note that my breastfed daughter gets sick more often than the two that I didn't breastfeed.  Strange!

Well I wish you all success whatever decisions you make!

Tammy
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luckygirliz
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« Reply #14 on: April 20, 2009, 11:05:36 AM »

I wanted to write and say thank you for all the encouragement about BFing and possibly starting Enbrel.  I feel a lot more informed this time around than I was before.  I spoke w/ several Lactation Consultants as well as my dr's while I was pregnant so that I would have all the information I needed BEFORE the pain started so I would be better prepared.  My son was born 6 weeks ago and after asking for help I am now feeling very comfortable about starting Enbrel and still breastfeeding.  I read about Dr. Hale's studies (thanks for the link!) and myself and my dr's all feel confident that BFing and starting Enbrel would be a safe choice. 
I dont know that I'd be able to tell if soemthing my son gets is due to Enbrel or other factors. My daughter was breastfed until 3 months old (when my flare began) and from a rheumy who wasn't supportive or understanding about my desire to BF I quit then to being Enbrel.  She was very sick off and on (also in daycare though) w/ numerous ear infections and tubes, pneumonia and colds constantly.  So far my son has been very healthy.  I read that 6 weeks pp is when the RA usually returns and so far I'm feeling very good (and praying it continues!)  If your RA went into remission during pregnancy when did it return?? 
Oh, and one more thing.  I read numerous studies that were done that said if you BF for around 1 year your chances of getting RA is significantly lowered...does anyone know if you BF and already have RA if it will lessen, go into remission, or go away all together? 
I love all the support on this board.  I'm trying to stay well informed so that I can help others w/ questions, but so far I do appreciate everyone who's helped me out!
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