This page was designed to spark discussions between you and your doctor/s on the best choices for you and your child when it comes to baby’s feedings. It is not a comprehensive discussion on the risks and benefits of breastfeeding, but will hopefully give you some things to think about and some places to go for some information.
So, you’re thinking about breastfeeding, but not sure what to do? You are probably concerned about baby’s nutrition, that special bond baby builds with mommy, the medications you are taking, how your body will handle it, baby’s long-term health, the financial costs of NOT breastfeeding, and probably a host of other things. I certainly can’t advise you on what to do, but I can share my story and maybe it will give you ideas.
As my son’s birth was approaching, I was becoming increasingly concerned about the risks/benefits of breastfeeding. I was taking Enbrel through my pregnancy (a huge risk in and of itself) and was afraid to be taking it during breastfeeding. There is not much information out there at all about RA meds during pregnancy and breastfeeding (except for some known bad ones). I started by talking to my OB, who stated she knew nothing about it. She recommended talking to a pediatrician, which I did. Of course, the pediatrician made all sorts of phone calls and looked up information anywhere she could, but there just wasn’t anything out there. I then spoke to my rheumatologist (she had not been greatly supportive of staying on Enbrel during pregnancy, so I was hesitant to ask her about breastfeeding). She was able to find some information, but it was not linked to a study or anything like that that I knew of, so again it was still highly risky. The best information I could find was that Enbrel was in mom’s milk, but that it was likely destroyed by baby’s gastric juices. It also destroyed the antibodies in mom’s colostrum, so it would not be as good for baby unless I stopped Enbrel around my delivery time. After lengthy discussions with my husband, we opted to go for the breastfeeding.
I stopped my Enbrel briefly (8 days before delivery and started again 3 days after). We started breastfeeding, and things seemed to be going well. My son appeared to be doing well being breastfed, and it was enjoyable mommy time. Then about 5 weeks after delivery, I started to flare. I had read that most women with RA flared 4-6 weeks after delivery, but I had somewhat convinced myself I would be ok because I was still on my meds. WRONG! So then I started getting really nervous. I’m breastfeeding, what can I take that won’t harm my little guy? And even though they SAY it’s safe, is it really? And for how long? So pretty soon, I was on Enbrel, Prednisone, Advil, Tylenol, Darvocet, and had a Cortisone shot. I was doing ok for a while, but then I started getting progressively worse. I started to suspect that breastfeeding might be the cause of my flares and started researching that. I found one study that thought there was a link, but basically nobody has really looked hard at this. The existing studies appear to relate it to having a baby, but don’t take breastfeeding into consideration.
Anyway, at a certain point I cried mercy and decided to wean my son in the hopes I would get better. He was starting to roll over here and there. I thought if I didn’t get better by the time he gets mobile, I would be in big big trouble. At about 4 1/2 – 5 months, he was officially weaned. As I write this, that was about 2 1/2 weeks ago. I am definitely feeling better, but still not good. I am off Darvocet and decreased the Advil and Tylenol. I am still taking Prednisone and Enbrel.
2006 Update: My son just turned one year old. He has been weaned since about 4 1/2 months. Just within the past 2 weeks, I’ve started to feel really good, almost back to my normal self. The problem is that I am still on 8 mgs of prednisone, 4-6 Advil, and 2-4 Tylenol per day (and still Enbrel). I feel that if I can be this good off the prednisone and that volume of Advil and Tylenol, then I’ll be in really good shape. The goal is to cut back 1 mg per month.
About my son: He is doing very well. He’s had MANY infections since starting daycare. Sometimes I worry that the Enbrel has done something to his immune system, but then I look at the other kids in his class. They seem to get sick just as often. He did have ear tubes put in about a month ago, and that seems to really have helped. He’s still getting colds, but they aren’t lingering or making him completely miserable. He’s meeting his developmental milestones. He’s a little on the small/skinny side, but my husband and I are fairly short as well.
2007 Update: It has now been about 19 months since I weaned my son. I was doing steadily better (by my own account and sed-rate and c-reactive protein measures) until about 16 months after weaning. I started getting massively worse. It now appears that I also have Grave’s Disease, which is an auto-immune disease of the thyroid. It can make RA worse. I will likely be having radioactive iodine to kill off my thyroid in a couple of months. I then have to wait at least 6 months before trying for baby #2 (the goal!)
My son is doing much better. He was diagnosed with Reactive Airway Disease. As near as I can figure, it means he wheezes a lot. He probably gets it from me as I had asthma as a child. We’ve got a great allergist who gives us lots of good info and medications so we can treat before he gets real sick. So far, this has been working really well for him, and he hasn’t had any major illnesses in 7 months.
Feb 2009 Update: I had my thyroid radiated in November of 2007. I now have to take supplements as my thyroid doesn’t work anymore. We are still figuring out the correct dosage, but we’re close. My RA has been much better the last 5 months or so, and the thyroid meds seem to play a big role in that. My energy levels have been the best they’ve been in many years, but I still have more pain than I would like.
My son is doing great. His once “Reactive Airway Disease” is now called “Asthma” and is well managed. He was diagnosed with allergies last spring and is allergic to lots of spring weather things. We’re awaiting April, which we were told might be rough.
Jan 2011 Update: After 3+ years of tinkering with my thyroid, I realized that it’s going to take constant monitoring, and it has a big impact on my RA. Either way, I started physical therapy in July 2010 for my back. Apparently, having a baby stretches out your stomach muscles (SHOCKER, I know), and your stomach muscles support your back. I couldn’t get my back right because my RA was bad enough that I had gotten weak. After I graduated from PT, I started “exercise therapy” at a pilot program at a hospital about 30 minutes away. I see a PT individually once a week. She creates a specific exercise program for me that I can actually do. All of this “RA fatigue” I thought I was having was really just weakness. I lost all my muscle mass. In 11 weeks, I’ve gone from not being able to lift any weight to lifting 5 pound free weights and 10-40 pound weights on machines. I’m starting to feel GOOD, not just tolerable. I still have a way to go to get my knees and hips back, but I’m starting to be able to see the possibilities of it all!
Cavan’s health has improved. He got his tonsils out in November 2010. Since then, he’s been eating much more, much faster, and much healthier. He’s had 2 colds since then, and it’s been a miracle for us. No emergency calls to the doc in the middle of the night. No blue boy from lung infections. No vomiting. It took 3 ENTs to get somebody to do it, but I’m so glad it’s done, and he seems much happier.
Aug 2013: Wow, this has been a long road. I finally feel like I am on a good path. You can read my personal road to health since January, 2012 here: http://rapaleo.momswithra.org/wp/?p=6
With my son, he continues to do well. Although we still consider him a picky eater, he’s at least eating a much greater variety of food, including some vegetables and meats. Thank goodness! This seems to have made a significant impact on his health. His asthma has been oodles better than when he was young. He can actually “tough out” a cold now, something that would have had him in bed for a week 3-4 years ago. I don’t have reason to suspect that this is due to the Enbrel, as I had almost these exact same issues as a child. Cavan, however, is much healthier than I was at his age. I hope that continues.
Places to go for breastfeeding information:
***As always, you absolutely need to be having these discussions with your licensed practicing physician (or that of your child’s when appropriate). We cannot make recommendations.***
A Well-Kept Secret, Breastfeeding’s Benefits to Mothers:
Arthritis, Fibromyalgia, and Breastfeeding:
Breastfeeding-related onset, flare, and relapse of rheumatoid arthritis:
Breast-feeding and postpartum relapse in women with rheumatoid and inflammatory arthritis:
Can Breastfeeding Prevent Illnesses?
Drug Safety During Breastfeeding from BabyCenter.com:
Try googling these articles:
Arthritis Rheum: 1994 Jun;37(6):808-13.Breast-feeding and the onset of rheumatoid arthritis.
Arthritis Rheum: 2000 May;43(5):1010-5.Breast-feeding and postpartum relapse in women with rheumatoid and inflammatory arthritis.
Arthritis Rheum: 2004 Nov;50(11):3458-67. Do breast-feeding and other reproductive factors influence future risk of rheumatoid arthritis? Results from the Nurses’ Health Study.
Arthritis Rheum: 1996 Feb;55(2):94-8.Oral contraception, parity, breast feeding, and severity of rheumatoid arthritis.
Book: The Nursing Mother’s Companion 20th Anniversary edition by Kathleen Huggin, R.N., M.S. (contains information on some RA drugs). May have a newer version now.
Disclaimer: This site is designed to inform and support those with Rheumatoid Arthritis. It is not a comprehensive medical guide to the disease. This information is taken from many different resources. The writings on this site are not intended to diagnose nor treat. People write from their own personal experience and knowledge. Their ideas are not to be substituted for the medical advice of a practicing physician.