tag:blogger.com,1999:blog-4829223433007649672.post8670458297797692315..comments2023-09-27T05:58:00.753-04:00Comments on Stephanie's Mommy Brain: Rheumatoid Arthritis (RA), Pregnancy and EnbrelStephanie Kayhttp://www.blogger.com/profile/02976709475515458563noreply@blogger.comBlogger65125tag:blogger.com,1999:blog-4829223433007649672.post-71470113855548200992013-10-27T16:12:32.491-04:002013-10-27T16:12:32.491-04:00Thank you for updating us, John! And CONGRATULATIO...Thank you for updating us, John! And CONGRATULATIONS on your little guy!! Soak in that "new baby smell" while it lasts. :)Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-14880916082183866422013-10-27T08:27:27.929-04:002013-10-27T08:27:27.929-04:00Update to my earlier post (June 26, 2013 at 11:43 ...Update to my earlier post (June 26, 2013 at 11:43 PM).<br /><br />Hello again.<br /><br />I'm back to provide an update for those mothers out there struggling with RA, pregnancy, and Enbrel.<br /><br />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.<br /><br />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.<br /><br />1st trimester:<br />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.<br /><br />2nd trimester:<br />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.<br /><br />3rd trimester:<br />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.<br /><br />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.<br /><br />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!<br /><br />JohnJohnnoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-44712050878909490012013-08-30T23:15:58.258-04:002013-08-30T23:15:58.258-04:00Update August 30, 2013:
In May 2013 I gave birth ...Update August 30, 2013:<br /><br />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). <br /><br />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.<br /><br />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!!Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-31631418743481110772013-06-26T23:43:55.223-04:002013-06-26T23:43:55.223-04:00From a husband whose wife has RA -- wanted to say ...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.<br /><br />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.<br /><br />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.Johnnoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-25577068123912651332013-06-12T00:56:09.755-04:002013-06-12T00:56:09.755-04:00Hi Stephanie!
Thank you so much for this blog(and ...Hi Stephanie!<br />Thank you so much for this blog(and to everyone else that has posted)!<br />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!). <br />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!<br />Best wishes to you and your family!<br />Carienoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-80971549118540572362012-09-23T13:46:37.161-04:002012-09-23T13:46:37.161-04:00Thanks for posting this. I now know I"m not t...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<br />Johttps://www.blogger.com/profile/00612692295233249950noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-46082071417463367432012-08-31T06:47:02.411-04:002012-08-31T06:47:02.411-04:00I came across this blog whilst trying to find any ...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. <br />Can I ask, did you take painkillers during your conception and during the pregnancy yourself, or did you go cold turkey on all meds?Kekoanoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-68775448369622416192012-08-11T11:55:34.904-04:002012-08-11T11:55:34.904-04:00I'm so glad that this post and comments is giv...I'm so glad that this post and comments is giving women hope for pregnancy and breastfeeding. <br /><br />Just to be clear you can NOT take methotrexate while pregnant or breastfeeding. It is known to cause miscarriages and birth defects. <br /><br />Best wishes as you grow your families!!Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-1881106029797712722012-08-11T07:58:38.822-04:002012-08-11T07:58:38.822-04:00I am 31 yo mother of one researching how to go abo...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 xxCherylnoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-54873129549231498802012-07-15T08:46:42.693-04:002012-07-15T08:46:42.693-04:00Hi! I'm 18 years young and do not have any chi...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 :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-25482006160298812872012-06-30T22:15:42.365-04:002012-06-30T22:15:42.365-04:00Anonymous, I'm so glad you found this post and...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!! :DStephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-31661953809153285452012-06-30T22:12:25.096-04:002012-06-30T22:12:25.096-04:00Hello Everyone!
I just want to thank Stephanie fo...Hello Everyone!<br /><br />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!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-42735170405697130602012-04-15T23:03:22.008-04:002012-04-15T23:03:22.008-04:00Thank you Stephanie for your reply, it is comforti...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-38233440530296668242012-04-15T21:52:03.370-04:002012-04-15T21:52:03.370-04:00Vanessa, I hope you are feeling better and feel re...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.Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-56591320382373668502012-04-14T14:55:55.230-04:002012-04-14T14:55:55.230-04:00Nomi, congratulations on your pregnancy!!! I think...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.<br /><br />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. <br /><br />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. <br /><br />Good luck with your new baby!! I'm sorry I don't have more info for you. :)Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-22456320536337223132012-04-14T14:25:17.540-04:002012-04-14T14:25:17.540-04:00Hi, I've had ra since 2007, mine got pretty se...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.<br /><br />excuse my writing cause english is not my native tongue. THanks:)Nominoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-7618110874257996022012-03-11T11:42:42.317-04:002012-03-11T11:42:42.317-04:00I was diagnosed with RA almost 12 years ago and ha...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. :)Vanessahttps://www.blogger.com/profile/03429769853283226722noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-45928437940053098062012-02-11T17:23:43.492-05:002012-02-11T17:23:43.492-05:00Anonymous,
Congratulations on your baby!!! A new ...Anonymous,<br /><br />Congratulations on your baby!!! A new baby is so exciting!<br /><br />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.<br /><br />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.<br /><br />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.Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-84809334374758665422012-02-11T12:14:24.898-05:002012-02-11T12:14:24.898-05:00Hello everyone! I just found out I'm prenant a...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-53027664401177370642012-01-28T12:41:45.651-05:002012-01-28T12:41:45.651-05:00Kerry, I'm sorry that you've had to wrestl...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.) <br /><br />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!Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-26987765499579410852012-01-28T06:16:21.758-05:002012-01-28T06:16:21.758-05:00Thank you so much for posting this. I was diagnos...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!Kerrynoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-81843187470866131412011-12-08T10:13:35.264-05:002011-12-08T10:13:35.264-05:00Anonymous, congratulations!!! Thanks for stopping ...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!Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-85843514029070258472011-12-08T08:28:33.730-05:002011-12-08T08:28:33.730-05:00Hello Stephanie and all the other momas!
here is m...Hello Stephanie and all the other momas!<br />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!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-54697048646871004752011-11-28T21:45:07.560-05:002011-11-28T21:45:07.560-05:00Meryl, thank you for sharing your experiences!! I ...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.<br /><br />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.Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.comtag:blogger.com,1999:blog-4829223433007649672.post-91894909262203639362011-11-27T20:12:11.700-05:002011-11-27T20:12:11.700-05:00Congratulations Mariah!!! I look forward to readin...Congratulations Mariah!!! I look forward to reading your story as it unfolds!! :)Stephanie Kayhttps://www.blogger.com/profile/02976709475515458563noreply@blogger.com