Information & encouragement to fight RA
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Thank you for posting about this important aspect of living with RA!! I’d like to share my story if I may.
I am 16 weeks 5 days pregnant with my first child, having been diagnosed with RA almost three years ago. I’m 29, and RA was actually a deciding factor in when to start a family. I knew that pregnancy and caring for a child would only get more difficult as I get older, so my husband and I decided that now was the time. I spent nine months coming off of methotrexate, Humira and naproxen and have been completely medication-free throughout my pregnancy so far.
While I can’t say I’m in remission, my symptoms have remained under control and I have had no pregnancy complications.
I do worry about what it’s going to be like once the baby is born, but there is nothing to do but take things one step at a time!
Good luck to all those moms and moms-to-be!
Lydia, thank you for sharing! Congratulations on the baby. :bunny: So glad your pregnancy is being kind to your RA.
Will you have support planned in case the birth triggers a flare?
My rheumy is on standby with cortisone injections if I have a serious flare, at which point we could discuss some of the safe drugs, but we agreed that I would try to go without drugs if at all possible. I already have an appointment for six weeks after my due date to discuss starting back on meds and hopefully pre-empt the dreaded post-delivery flare.
My RA started when i got pregnant with my son.. and i had the worst pregnancy known to man.. trying to keep him in was a feat. my pelvic floor was so sensitive i couldnt walk my hips and sciatica were trecherous from the minute i concieved. not due to weight in the pelvis.. my back injury at the same time proved very difficult. the meds i was on at the time for the back injury gave my son SPINA BIFIDA and we didnt know till birth.. he hid durring his sonograms his disability till he was born (what a shock to me) anyhooo i wish i could have had easier pregnancy i had one other child with the same pain and suffering and trying not to abort the whole time. but she was born late a full month late before she was born with meconium as her only problems.. needless to say they were my only children i couldnt go thru it again.. was just too dangerous for me.. wish i could have had the remission pregnancies instead……
Shannon, I’m so glad you have both of them! The greatest blessings as I’ve told you before I’m sure. :heart: So your RA started with the pregnancy?
Has anyone been on Enbrel during pregnancy or while trying to conceive? That’s what I’m on right now and I’m trying to figure out what to do for when we decide to try for kids. For those who went off all meds before conceiving, did all of your symptoms return as soon as you went off? I’m afraid if I go off everything, I won’t be able to get around well, won’t be able to work, etc. and if I have to be that way the whole time we’re trying to conceive, who knows how long that will take.. let alone what will happen during pregnancy. These are difficult decisions…
Hi Dana, I have talked to a few readers who have done that. Hopefully, some of them will come reply to you soon. You are good to think through this – sometimes going off and back on a biologic treatment, it does not work the same after the body starts to make antibodies against it. Another option that I know some have tried is prednisone. You are right – hard decsions – like I said there’s no recipe. Have you talked with the specialist docs already?
edit: Forgot to say – going off meds – really no way to predict what will happen. Some people flare more than others. Maybe you won’t! 😀
Thanks, Kelly. My rheumatologist said he prefers that his patients are in remission before getting pregnant (we’d all prefer that!), but otherwise said it is best to be off Enbrel. He did suggest doing a low dose of prednisone if my symptoms flare (which they tend to do as soon as I stop taking my meds…). However, he’s not completely opposed to using Enbrel during pregnancy, either. I think he’s just concerned because there’s not much info out there on its effects. He has had one patient take Enbrel throughout her pregnancy, and she did not have any problems. I guess I’ll have to take it one step at a time, and see how I do. If I need to take something besides prednisone to function, then I guess I won’t have a choice. It’ll probably be a year or two yet before we try for kids, so who knows, maybe I will be in remission by then
I am 29 yrs old and I used enbrel throughout my pregnancy two years ago. It was a very difficult choice to continue my meds but I have a very supportive dr. I had a text book pregnancy and a perfect healthy little boy. Good Luck!!
Thanks, Michelle. Very encouraging.
Yes, thank you, Michelle! And congrats on your little boy Can I ask if your doctor had any concerns about breastfeeding while on Enbrel? My rheumy doesn’t seem concerned about it at all (he said if I went off Enbrel during pregnancy he’d want to start me back on it asap after giving birth), but I haven’t heard anything on it from anyone else…
I stopped most of my meds, did great during pregnancy, had a c-section because of some blood pressure issues (it was fine with me) and I breast fed for a month before I needed to get back on my meds because of pain
Thanks, Erica. And you forgot to mention your beautiful little girl… :heart:
Hi Dana and Kelly,
I had my first baby before my Juvenile RA really flared,(or actually came out of its 15 year remission) it was gradually coming on, but disappeared during my pregnancy. At that stage is was undiagnosed.
My second baby was conceived while I was on NSAIDS – Voltarin or Ibuprofen I think. My MD suggested I stop taking them as soon as I found out I was pregnant, which I did.
I was pain free during most of both pregnancies with the first couple of weeks of the second one being quite an adjustment as I had to drop all meds immediately once I found out I was pregnant.
One of my nurses was absolutely sure the pain relief was due to naturally occurring cortisol in pregnant women. One of my doctors was sure it was hormones. I’m thinking the cortisol theory sounds good, because when I was pregnant it felt exactly the same as when I was taking cortisone. But then again, that’s what remission feels like, isn’t it?
I just googled cortisone production in pregnancy and found an interesting article. Has anyone else heard of this. See below:
“Lack of potassium is responsible for Cortisol depletion in blood. If such a scenario arises, the transformation of 11deoxycortisol to Cortisol is also inhibited. The severe pain in rheumatoid arthritis is caused by a reduced level of cell potassium.”
It’s news to me, but it might explain my high blood pressure and leg cramps at knight, which are also attributed to a lack of potassium!
I’ve never heard this before, has anyone else?
I’m off to go eat a banana! See if I can build up my cortisol via potassium. Must find out more!!!
I am 33 years old. I was diagnosed about 4.5 years ago. I have two healthy boys! My oldest was conceived and delivered before RA. He is six years old and just graduated from kinder. I also have a four and a half month old son. I was on humira only before conceiving and as soon as I soon as my hpt was positive, I stopped the Humira. I had been trying for a year with one miscarriage, so I was very intune to my body and cycles. I did conceive and felt great the first trimester, the second triemster I had some aches, pains, and swelling and got on prednsione. I remained on it at a low dose and am currently still on it. I had a few cortisone shots in my elbow and wrists throughout pregnancy. For the most part, I felt wonderful compared to how I feel now. I delivered a healthy boy, two weeks early. And the labor and delivery with the epi was easy! I did not receive any steriods during l&d. At my 6 week check up, I still felt great. 7 weeks after delivery, it hit me hard. Like I had been run over by a train. I was breastfeeding and with consultation with my Rheumy, I got back on Humira. I moved up to weekly humira, and no improvement. I am now on Cimzia, with some improvement. I will be going on methetrexate for the first time and have been weaning my son. I am miserable. I wish I would have gotten on meds soon after delivery. Caring for my son is difficult. The RA has gotten me physically and emotionally. My son is sooo worth it, but I am ready to feel better. Good support and good doctors that you trust are key!!
Thanks for sharing, Melissa. Good advice about support. I hope the methotrexate helps. I was the same way a few months after the birth of my youngest- it was then it hit me like a ton of bricks and no relief would be found. I needed a lot of help with him and still have a hard time – he’s turning 5. I never could put on his socks. Yet I have these other mothers who had RA who tell me that my son will be just fine! in spite of that. :heart: I agree soooo worth it!
I am currently trying to get pregnant.. my Rheumy told me I had to be off of Enbrel for a solid two months before we became pregnant. He said that they weren’t sure of what would happen, so two months the medicine is completely out of your system. I’m not sure if this helps or not.
Reading your comments was like reading about myself. I too had one child when I was diagnosed with RA. I miscarried and then went on to have two more healthy children despite this disease. My children are now 23, 18 and 14. Yes there were lots of limitations/tradeoffs in raising them but the rewards are that you have children who are helpful and kindhearted. I have been through the journey that you are just starting so if you ever need to talk to someone, you can e-mail me at firstname.lastname@example.org.
Hello, I was diagnosed at 28 with RA/FMS, and found surprisingly myself pregnant at 36 – didn’t expect to be able to conceive due to years of MEX.
The hope for remission was dashed very quickly, and I ended up on bedrest at week 16, and my son was born at 32 weeks due to ravaging preecclampsia. I was told that mmy RA and age was contributing factors to him being only 3 lbs 2 oz at 32 week gestation. As for meds, Celebrex was stopped, as it can cause renal issues in the fetus.
Alex will be 3 next week, and is a happy bouncy bubbly child, where his old creaking mother has a hard time keeping up. His only lasting deficiency is a speech delay. I was put on TNF’s last year, and have somewhat achieved stabilization.
Still, with or without RA, chasing a toddler is hard work. Some days it works better than others. The not so good days we make due. Alex has learned not to pounce or bounce me, and he’ll use the sign for “owie” and “mommie” when he notices it hurts.
Hi Laila, Thank you for sharing that story! I’m so glad for you that you have him. LOL – “old creaking mother.” :silly:
(Probably it’s nothing, but I have 2 deaf children, so I have to say to anyone reading: keep a check on the hearing w/any speech delay.)
Did you use any RA treatments during the pregnancy?
*creak creak squeak*.. DMARDS, I have tried most of them and believe in none for me. I’d been off most of the ones I’d tried for a year or so before I conceived, so – no (short answer)
As for Alex and his speech – Better test once too many than missing something important! He’s passed ’em all, just didnt get around to do the actual talking part.
We started with Sign language (ASL) – Signing time to be exact, in September, as he had not said a word until he turned 27 months. ASL is feasible, as you know, with RA hands. you just talk a bit slower. (what an oxymoron)
How do you deal with the accuracy in ASL when your hands “aint moving fast enough or flexible enough”???
Great question. We don’t use ASL in our house although both of them know a little of it. They both speak pretty well & wear powerful aids – they are very reliant upon lipreading also. I have been saying that ASL seems impossible to me now. I guess if it were vital I’d get thru – like I force the issue w/my typing (backspace every other key). Ouch. :-p
I was diagnosed with RA a month before falling pregnant with my first child. I was put on plaquenil and had prednisone on standby to start if needed. My first trimester went well and all my RA symptoms dissapeared. Unfortunately it didn’t last and by 5 months I was on the pred, having serious flares that stopped me from working at times and meant my husband had to stay at home too just to carry me to the bathroom or help
me get dressed etc.
My son was very healthy during my pregnancy and he was born without any problems. Unfortunately I began serious constant flaring almost the day he was born, and my RA has only proceeded to get worse ( he is now 7 months old). I am now on MTX (I breastfed for 6 weeks then needed to stop for the MTX as there were times I couldn’t even hold him) simponi and still trying to get off pred – I’m down to 5-7.5mgs a day depending on how I’m feeling. I gave my 3rd simponi shot in about a week, I’m really hoping that it starts to make a difference. Or maybe it is and my RA is just extremely bad now.
I would love for my son to have a sibling, but knowing how much serious medication I am taking and the pain I’m still in from day to day, I don’t see any way that I could come off the meds for a min of 12 months – 3 months to clear MTX and I’d have to fall preg straight away..
I just thank goodness that we had Charlie when we did!
Good luck to all of you!
Ed – thank you so much for putting your story here. I know it will help others to read it. My RA symptoms got a little worse after each pregnancy, but they would come and go. Then after the last one, it became 24/7 unresponsive to meds, blah blah blah so I know how you feel. Even though I had older children, I would have gladly had another so my baby would have a sib of his own generation – but RA changed that. I already had other children, but it was still hard to know that this disease made my decision for me. I would not trade my son of course even if I knew what would have happened.. I sure hope you feel better soon. :heart:
I have three kids. I started having symptoms of RA before I became pregnant with my second child, went into remission during the pregnancy, and was diagnosed after his birth. My RA has been fairly mild, so I was able to go off all drugs when we tried for number 3, who is now 13 months old. I went into remission with her as well, but my symptoms came back with a vengeance about eight months ago and now the RA is the worst it’s ever been, although still not as bad as many of you describe. I have had days when I was scared to pick up my daughter, and these days I’m finding creative ways of lifting her b/c my thumbs can’t usually handle the pressure of holding her the “normal” way. Still, she is a blessing, and my boys know that sometimes Mommy just hurts a lot and they are such a help to me.
Hi! I breastfed my son for 8 weeks with prednisone only. I then was ready to quit and get back on meds. My rheumy encouraged me to continue nursing my son. He explained the size of the molecules and the way it is digested, etc. And assured me it would not harm him. I was on weekly humira shots and now I am on cimzia. I also looked at the OTIS study and found some helpful info. Dr Hale is a guru and has an informative website and book called medications in Mother’s Milk. It was also a great resource. I’m weaning now to start methetrexate, but glad I nursed as long as I could. I also am a member of babycenter.com and there is a group of supportive women in a group called rheumatoid arthritis. It was a great resource as well.
Hope this helps! You will find answers to do it and not to do it, so research and do what feels right for you. Good luck!
I am 28 years old and was diagnosed w/RA @ 20. I also had a battle with Ovarian cancer @21 so having children seemed to be almost impossible. My Doctors said there was only a slim chance I would be able to conceive. Last year my husband and I decided to go for it and after seeing my Rhuem., ob-gyn & a high risk specialist we felt good about our options. The advice we received from all was similar–get off Methotrexate(at least 3 months)& Ralefen, I was allowed to stay on Enbrel until I got a positive pregnancy test. They all agreed that if I didn’t go in to remission I could resume Enbrel. While none of them encouraged the use of Enbrel they were all of the opinion that “the research is promising” & “In theory all should be fine.”
I was blessed to conceive almost immediately but my RA flared terribly after 4 weeks off of Enbrel. My husband and I had discussed what we would do if I had a flare during pregnancy and after the 4th week in a flare unable to function, work, get dressed etc. I resumed Enbrel. I was able to take a lot less during pregnancy, one injection every 2-3 weeks. I delivered a healthy baby girl in December. I nursed her for 12 weeks on Enbrel. My Docs all agreed that if I took it during pregnancy, I shouldn’t worry about nursing on it. The lactation consultant said it was fine as well. My daughter is 5 months old and doing great! I have my good days and not so good days but I love being a mom
There are many different opinions out there but this worked for us and we plan on using the same plan for our next kiddo.
Oh Crystal, that is wonderful news. So glad you have her now! Congratulations! Did you flare after childbirth?
I did have a minor flare at about 6 weeks but I hadn’t resumed my normal weekly Enbrel schedule yet. In the midst of a new baby and all that comes with it I just forgot (maybe wishful thinking) I need my weekly injections!
My biggest RA challenge came after my 2nd mastitis didn’t respond to oral antibiotics. My pain tolerance landed me in hospital requiring emergency surgery to drain the infection. I had no idea how bad it was! The doctors were shocked that I was still nursing. I had an over supply issue that caused the repeat mastitis and decided to stop nursing. The surgery left me with an open wound and another challenge in caring for my baby. I was unable to be on Enbrel until the wound healed– just over 5 very long weeks!! Of course the timing was not great and my maternity leave was up during that period. So back to work (teaching kindergarten) I went — off meds and barely moving!! I was able to take a Medrol pack but it’s effects were short lived.
I have amazing support in my family that helped me take my daughter during that time and continues to lend support whenever we are in need!
Crystal, thanks so much for sharing! Your story was very helpful to me, as your approach is basically the way I’d like to take things — I just don’t know anybody who’s done it! How amazing that you were able to have your daughter despite the challenges I hope any subsequent pregnancies go smoothly for you!
I got RA after my first pregnancy~~approximately 6 weeks after. We waited 3 years+ before even considering getting pregnant again…and even looked into adoption.
We tried to wean me off of medications several times, but I was in too much pain. Finally we went for it, I was off of meds for 4 months, I got pregnant right away, but the entire 13 months (including 4 months off meds, and entire pregnancy) was horribly painful. I was in pain the entire time, some days couldn’t walk and many days could do no more than sit on the couch. I didn’t sleep more than 30 minutes at a time through the nights, because I would wake from the pain of lying on those joints. After the pregnancy I found relief only once my medications got back to where they were supposed to be.
Would I go through it again? No. BUT, that is because I have 2 children, I am happy. If he were my first child, would I do it again? Maybe. It was a really tough year…
I have friends with RA that went through the similiar, and they are having more children, no question.
Hi Jill, Thanks so much for sharing your experience with others. I know it helps them.
Enjoy those children. :heart:
I began with symptoms of RA during Christmas 2008. By Feb 2009 I was making appointments to see my doctor about a diagnosis because the pain was more than I could handle. During the blood tests to help with diagnosis of RA they took a sample for a pregnancy test – the following week I was told that, not only did I have severe RA, I was 5 weeks pregnant. This was a total shock as we had been told that we couldn’t have children!!
I was really lucky in that by approximately 12 weeks gestation I was in remission. My pregnancy was normal although I needed a c-section because Sam had got himself wedged!!!
At 7 weeks post delivery (Jan 2010) my symptoms returned. Since then my RA has continued in severe progression (that’s what my Rheumy calls it anyway) They are trying to control the disease and the pain but aren’t having much success. Life with a baby is really tough but he needs me! He is now 6 months old and I have done all his night feeds from birth, I get up every morning and pick him out of his cot, dress him, feed him, cuddle him, change diapers and play with him. Sometimes the pain is so bad that I am in tears at every footstep I take between our bedroom and his nursery, I come down stairs on my bottom with him on my knee because it’s the only way I can do it – but I do it because something inside me drives me on………my little boy needs me to be there for him to care for him and keep him safe. I don’t know where it comes from but I think all mothers have a strength inside them that makes them keep going.
I’m not perfect, and my RA is completely out of control………..but Sam comes first, regardless of anything. Would I do it again???…………never!!! Would I recommend having a baby with RA???…………definitely!! I’ve never been happier than when I see his big beaming smile from the cot, or when he blows bubbles and kisses for me…..he’s perfect and keeps me believing that everything is going to be fine.
Huge hugs to you all,
Sara and Sam xxx
Hi Sara! I can see you doing all those things through your tears and I have tears now as well. I needed a lot of help with my own Roo, my last child – I never was able to get socks on him after RA went into my fingers. But he is the light of our family many times. Thank you for writing. a bunny for Sam :bunny:
Thank you for the bunny Kelly – Sam loves bunnies!!! I’m lucky at the moment that it’s warm enough to cope without socks……but all baby clothes have poppers and buttons which are a total pain!! I also try and explain to Sam that when his little legs kick out into mummy’s hands it really hurts…..his smile makes it better though
I’ve found out today that I’ve got a 3 week wait to see my new consultant – they tried to start a new drug, Sulphasalasine, last week but it made me too ill to look after Sam so I had to stop it………I wonder what they’ll try next!!!!
I hope you feel better soon xxx
Hi all- I just found this website, and really wish I had found it sooner.
I was diagnosed with RA in 2004 at age 26, as we were trying to conceive. After the diagnosis, we worked to get RA under control, and then went back to trying. I have a very conservative OB and Rheumy. I have had three kids since my diagnosis and here’s my rundown for each
Baby 1- only took prednisone 5 mg throughout pregnancy. Went into remission about halfway through pregnancy. Had to deliver via c-section due to fetal distress, but all turned out okay. Major flare about 3 weeks after delivery. Nursed for 3 months before the pain was so bad I couldn’t take it anymore. Vowed never to do it again.
Baby 2- again, only took prednisone. Again went into remission about halfway through. Had a repeat c-section, flared a few weeks after pregnancy. New symptom- severe wrist pain. Ended up with severe joint space narrowing and early bone erosion at the wrists- started Enbrel and methotrexate (previously had controlled RA with only plaquenil and prednisone)
Baby 3- again, only took prednisone. 5 mg/daily. Did not go into remission. Extremely difficult to manage pain/fatigue throughout pregnancy, esp with two older kids running around! Repeat c-section, started meds as soon as I could get the insurance paperwork worked out. It took a lot longer to get my symptoms under control this time. My baby is 8 months old now. I don’t know if we will have any more, as I seem to get worse with each pregnancy. I don’t know if I can take the pain- off all meds for 3 months before trying to conceive, 9 months of pregnancy, and the who knows how many months trying to control the return of symptoms.
I know many people take other drugs through pregnancy and are just fine. I just couldn’t, if something went wrong, handle wondering if it was because I took this or that drug.
Funny you talked about putting on your baby’s socks. Putting shoes and socks on is my least favorite thing! I can do it, but it takes much time and effort. Thank goodness we live in AZ where you can pretty much wear sandals year round.
Hi Valerie, thanks so much for the good info. It will be a good source of info for someone. My RA symptoms were worse after each childbirth also. Did your docs ask you not to have another baby? I’m not sure what conservative means. Did you mean they were cautious about medications with the pregnancies? It is so wonderful that you still had 3 children. It was a great accomplishment I think.
Yes, they were cautious with medications during pregnancy. They really didn’t want me taking anything but the prednisone- luckily I felt the same way so it wasn’t an issue, but I know some people feel differently.
They did not tell me not to have any more- they have always been supportive of our decisions to have more and the timing.
Thanks again for the site
I have tears spilling down my cheeks as I am typing my reply,…God I am so…..terrified with this pregnancy. This is my fourt6h one after being told for the last years I couldn’t have anymore because of an ovarian disease. SUPRISE!…..(CRYS)…..I am 34 soon to be 35 and was diagnosed when I was 23 right after the birt6h of my second child a son. I am severe…and fingers starting to deform already and unable to bend some. I fear being able to take care of my lil girl. I am 29 weeks pregnant. I just donot understand why God has given me another after being so terribly bad lately with my athritis. I am only on Prednisone now 15 mg. a day taken off Naproxen last week and so now I wait. All I want is to remember what it was like with my first child my daughter to hold and kiss and love without it hurting. Since when does loving your child supposed to hurt. I cannot hold hands without flinching,..carry,..hug…and NOW…NOW…I am going to have another one…so two boys and two girls supposed to be the perfect american family,..but instead I am dreading the aftermath of it all. I am terrified to go on meds that have bad side effects because I donot want the neds to kill me before I am ready to check out of this world,..so what am i to do? I guess I place this all in Gods hands and whatever will be,…will be…and with the support from my family and friends hopefully there will be a light at the end of this dark tunnel with my daughter to be reaching out for me taking her finally in my arms and excepting my fate whatever it shall be…God Bless!
Of course no one knows exactly how you feel. Loving your child is not supposed to hurt. There are a lot of very harsh things about this fallen world and this is one of the most cruel.
But there is still hope. And there is some help. It won’t be the way you wanted it to be – but it can still be good. There will be joy still when you watch them play even when you can’t join in. These are not empty words. –
My last baby, the fifth, was a surprise to me. The RA symptoms were worse after each birth, but after the last, my Roo, it spread thru every joint and has not relented since then. I was not able to do things for him that I did for the others & I’ve been in constant pain during his life. Each time my baby would want to squeeze my fingers, I’d pull away in pain.
I remember saying some of the same things you are saying. I decided to fight this disease as hard as I could – so my decision was to stop nursing my baby & take the disease treatments & learn as much as possible about trying to live as long as I can.
For now, you are doing the best thing by placing your life & your baby in God’s hands. You have time to decide what you’ll do next. You can face one battle at a time. One thing that has helped me is hearing from other moms who have said “My kids are happy and healthy & we did fine in spite of everything.”
My husband and I are soon trying to start a family. I am currently taking Humeira, Prednisone, and Plaquenil.. I wondered what others pregnancy experiences were on any or none of these medicines. My RA is in my arms, from fingertips to elbows most significantly and some pain in shoulders. Any suggestions feedback or help I would truly welcome.
I feel very fortunate to have found this website and like many of you, see (and feel) some of my own experiences in each post. I am 33 and was diagnosed with RA when I was 22. I have a wonderful Rheumy and trust here wholeheartedly. In February of 2009 I got pregnant and really didn’t have a solid plan or trusted OB that I loved. I had heard about the possibility of remission with RA during pregnancy, and I guess thought my symptoms would lessen. I had been on Humira and for about 3 years at this point, and my rheumy recommended that I stop taking it once I had conceived. She said Prednisone is considered safe at certain dosages but my OB told me not to take it. That it could possibly cause Clef pallet. I freaked! As a result I decided not to take it, and go med-free. My flare ups were severe and very painful, but I thought it was a sacrifice I had to make to have a healthy child. Thankfully, my sister talked some sense in me. she reminded me that it is just as important for me to be healthy as it is for the baby. What good will I be for my baby if I cannot hold or take care of them. After consulting with my Rheumy I decided to take the risk and go on 15 mg of prednisone. Come to find out, my doctor gave me bad information. There were rare cases where Prednisone was taken high doses for a significant pereiodnof time cause clef pallet. The risk of taking 15 mg was minimal. I was so conflicted because my doctors were saying different things and I didn’t know who to listen to. I
After almost of year of trying, I am now 5 weeks pregnant. Since my last pregnancy we have tried to be very proactive. We have a great OB who deals with high risk pregnancy and all of his research had shown, like some of yours, that the research for Humira looks promising. He is a conservative Dr. when it comes to meds during pregnancy would feel comfortable if I decide to stay on Humira. His greater concern is the effect my flareups would have on my body, such as permanent damage and the stress it would put on the baby. We have an important decision to make at this point. I am comfortable taking a low dose mg of prednisone as needed… but I wonder what the coming months will bring. So far, I have had minor flare ups in my shoulder and hands, but nothing too unbearable. I wish I could be certain that the humira would not be harmful, but I am encouraged that some of you have had healthy pregnacies and babies on biologicals through your pregnancies.
Carrie, I’m glad you found us too. Sometimes a topical post like this goes in waves, so I hope you’ll subscribe to comments to get future replies.
It’s so exciting you are pregnant again. I hope it goes really well for you.
Not sure what happened but a portion of my last post is missing…. Strange.
Hopefully the following will make sense of it all.
My first pregnancy ended at 13 weeks due to mc. I had complications early on and was put on bed rest. We found out later that our baby girl had triploidy, an extra full set of chromosomes. As you can imagine we were devasted, and through my pain I admittedly blamed myself. I know now that there was nothing I could have done to prevent what inevitably would have happened. My only regret was not having a plan for my RA and an ob I trusted.
First of all, I want to say “Thank You” to everyone for posting their stories.
I started showing symptoms of JRA at age 2 (I’m now 27), and have battled it for the last 25 years. Thankfully, I am able to manage my disease with NSAIDs and Predisone. One of the few benefits of JRA is that I don’t know what “no pain” is like. Pain and stiffness is the baseline for me, unlike those diagnosed later in life. I’ve also been in and out of remission for the last 10 years. I average 2-3 flares a year.
My husband and I are starting to think seriously about children, and we have started to do research regarding pregnancy and RA. I am encouraged by all of your stories that it is possible and most of you all have had good success. We are scheduling appointments with my OB and Rheumy to discuss more in depth.
I was very fortunate to go completely unmedicated for a period of about 5 years while having babies and breastfeeding. I miss that remission!
Oh wow, Jodi – I didn’t know that! That makes me hopeful How long before you had kids were you diagnosed? Though I hope that remission comes back for you!
I have 2 pregnancy stories. I already had a daughter but when I was in the very early stages of pregnancy with my son I was dxn with RA. I was caught very early on & was started on Nsaids & sulphasalazine which I believe I took the whole way though (have since read that Nsaids should be avoided during certain stages??). I went into pregnancy remission around 5 months and after Grant was born I breast fed him for 9.5 months, relying on depo-medrone steriod shots in the butt as the sulpha wasn’t working for me and my rheumy wanted me to start mtx. I wanted to feed my son until I was ready to stop so was stubborn & did so. I went on the mtx when he was around 9.5 mths.
7 years later my daughter was born. I came off mtx a good 6 mths before trying to conceive her but I had problems getting pregnant, the mtx had knocked my ovulation back which we didn’t discover till we’d been trying for 15 mths. A 6 mth course of fertility meds later, to kick start it again and boom I was pregnant. Again I went into remission around 5 mths and again I fed her until she was 9.5 mths and then went back on the mtx. I relied mainly on steroid shots to get by while I was off of my RA meds, during pregnancy and feeding. I was actually told after having my son that I shouldn’t have any more children, but I was determined that RA wasn’t going to rob me of my family. They are now 19, 18 and 11 I’m still on mtx and now also plaquenil. As for coping when they were tiny, I just found ways around things, I remember doing the ‘fork lift’ pick up & I had a good support system in my family.
Hello! I am glad to read all of these posts! was diagnosed almost 3 years ago at 32yo…am now 35. I already have a 9yo son. But we have wanted to ahve another for a while now. having difficulty conceiving. Wondering if anyone else has heard or experienced difficulty with conception after diagnosis? I waffle back and forth with concern over being able to care for a baby now and what will happen after birth. But we have wanted a second or more for a while now and at least I know my son is old enough to help me out a bit with running and fetching and the like! I haev been cleared of fertility issues by a specialist, so now the question is what is going on and I often wonder if has anything to do with the RA itself or the meds or something else? I will keep looking for answers at this point, even if another one isn’t in the cards for me, mostly because I have a need to know what is going on with my body!
I have been very lucky, I have 3 wonderful kids ranging in age from 14 to 6 yrs old. I was diagnosed with RA after my second child, but have tracked my first flare to 20 yrs ago. After each baby I went through a period of flare up, but not severe. I would only recommend that you seriously think about the meds you are taking when thinking about conceiving. Everything that goes into your body, goes straight to your baby. They can link so many developmental problems to chemicals in foood alone, and we take some seriously strong drugs. If you can, go off your meds for a year, give your baby the best chance possible. When you hold your baby, it will all be worth it Like I said I was lucky, and as far as my RA, never had a problem while pregnant. I just hated being the whale in the room 😉
I am 22, and I was diagnosed with arthritis this past January after an explosive flare up that lasted about 6 weeks from when it started to when I started taking prednisone. It effected my ankles, knees, hips, and wrists the most and there was a long period of the flare where I couldn’t stand up, bend over, go to the bathroom etc. I was started on an NSAID with no luck, so my rheumatologist put me on methotrexate. After about 8 weeks, I was able to stop taking prednisone and I feel great. My ankles are still swollen all the time, but I don’t have any pain. My husband and I are ready to start a family, and I have an appointment this week with a high risk OB. I am afraid of what pregnancy and post pregnancy will bring with my arthritis, and am more concerned after reading about how so many of you have gotten worse with subsequent pregnancies (we wanted a big family!). Anyways, have any of you had a similar story where you were diagnosed with an explosive flare-up, got control with methotrexate or other stronger drug, then tried to get pregnant all in the same year? I would love to hear anything you guys would like to share regarding this! Thank you!
I developed RA after the birth of my daughter in August of 2010. I had terribly painful feet and it was hard to walk down stairs especially. Then I’d have severely painful hands but also complete numbness which kept me awake with the pins and needles pain. I didn’t see a doctor until about 11 months after she was born, and was dx with RA. I don’t know the severity, but i had +RA of 48 and +CCP of 298. The very next day after learning my diagnosis I found I was pregnant. We were trying but to be honest if I’d have known about the RA I might not have wanted to have a second child. Anyway it made the Rheumatologist’s job easier since the medication discussion is put off until after delivery (though he said he’d probably put me on mtx and an anti-tnf) unless I need steroids i npregnancy. Unfortunately I have kidney disease so I can’t take any ibuprofen type meds.
Anyway I’m really having trouble with the idea that I can’t/shouldn’t breastfeed this baby. I worry about joint damage if I don’t get treated right away after birth, and also having things go back to as severe as they were about 6 months ago. I’ve read conflicting things, some say breastfeeding puts off a flare, others say it causes it. Any thoughts? I’m actually OK with formula feeding, we had to supplement the whole time with my daughter and I only BF for 6 months. But that’s why I’d always wanted to “do it different” this time. I don’t want to do permanent damage just to BF though. I’m 40 and definitely done after this one. I’m almost 12 weeks and still no remission.
Jamilyn – Your story is so similar to mine that I just had to respond. Would love to know of anything you found out regarding flare ups during pregnancy and ways to keep nursing for as long as possible. I had first flare ups during my first trimester (fall 2009) but didn’t know it was RA. Painful wrists kept me awake at night and at one point couldn’t lift my arm above my waist. Remission after the 4th month, my daughter was born July 2010, by October I could hardly get down stairs (feet), pick her up (thumbs/wrists), and was in tears often due to the pain. Diagnosed with RA in November, got one more month of nursing in while on Prednisone and pumping like crazy to try to extend the benefits for her. Then went on Humira and have been on it ever since – a year plus. Am now 38 and just got pregnant again. Took my last injection almost 4 weeks ago but have no plan for what happens if I have a flare up and no plan for post partum, which I expect to be the most difficult part since I would like to nurse as long as possible.
My other challenge is that I haven’t really figured out whether/how much I trust my current rhmtologist, as I have only been to him once. (my original rhmtologist moved away in the summer!) Ugh. Anyone have recommendations for great rhmtologists in the Philadelphia area?
Hi CW I just happened back to this page and saw your response! Thanks so much. I’m 29 weeks now and have been on prednisone since early October. 20mg/d and I still have some foot pain. Baby does not have any growth retardation which can be a concern with steroids – he’s at the 90th percentile. No preterm labor at this point either – yay!
I have seen references to “breastfeeding causing flares of RA” and a lot of women on babycenter say their flare happens around 6-8 weeks postpartum (all were breastfeeding pretty much). Others have said it doesn’t cause the flare, the hormones do. I tend to think it’s both, and because I’m worried about getting to where I can’t pick up my new baby, I’m pretty much decided to formula feed and start mtx. I tried sulfasalazine during pregnancy but had significant nausea and I’m reluctant to try it again during pregnancy because it can increase the chance for jaundice in the baby.
I wish I could give you a name, but I’m on the west coast so no idea about other rheumatologists
Hi all, Glad to have found this site!
I am 22 and I was diagnosed with RA when I was 3 years old, although they think I have had it my whole life. I am engaged and are going to start trying to conceive in the next few months. I have already had the disease so long and the damage in my joints is advanced and only going to get worse as I age. For this reason,I would like to have my kids young so I can be as healthy as possible for them for as long as possible. My RA is fairly well controlled. I have been on almost every RA treatment possible at one time or another. Currently, I am only on Remicade (infusions),5mg of prednisone daily, and 400 Mg (2 tablets) of sufasalazine daily. I have been talking to both my rhemy and OBGYN for the last 6 months about trying to conceive and forming a plan while I am still on birth control. I am hoping to stop all the medications when I get pregnant and pray that I will be one to go into remission so I can stay off of them! I know the low dose of prednisone will always be an option for pain management if I do end up flaring. I have a very aggressive form of RA as it is in every joint on my body and the damage is visible in some places. I wanted to know if anyone had to be put on bed rest or take disability leave from work and how early in the pregnancy?? I am hoping to work as long as possible but my job is pretty physical. So excited to start trying! My family worries and most of them think that I won’t be able to handle it and don’t want me to even attempt it. But I love everything about pregnancy and want children more than anything! Pain doesn’t really scare me because it’s been there my whole life. And as far as I’m concerned, the benefits will outweigh the risks! Thoughts?
FYI Sulfasalazine is safe to take during pregnancy, so if you decide to stay on it, there is no higher risk for birth defects. Good luck!!
Hi there would love to know if there has ever been a study done in the correlation of pregnancy and the onset of RA or is it a weird coincidence? My name is Jeanette and was pregnant with my second child later in life at 38 was about 3 months along when suddenly was having pain in different part of my body that at the time seemed to have no relation to each other , hands , feet , knees , hips and jaw and rushed myself to several GP’s and was basically told to have a Panadol and it would disappear after I had the baby. Thankfully had a short labour because at the time of delivery could use either of my hands or lift my arms !! So was very difficult holding or feeding my baby . I thank very much the midwife who came and saw us and told me she though something was very wrong, so went to see another GP who straight away thought it sounded like RA which it was.
Was put on Precidlone and Sulfasalazine because I was breastfeeding which unfortunately has not worked for me but was curious as had no symptoms at all before getting pregnant, am happy to say even though every day is a battle am so blessed to have a beautiful baby boy .
It is unusual what happened to you Jeaneatte. It’s more common to have pregnancy as a trigger with the symptoms becoming bad after the baby is born – still hard to hold the baby as I can say by experience. I’ve not seen a study of cases like yours, but if I do, I’ll write about it on the blog.
I just wanted to say I am so thankful I cam across this website.I actually started welling up when I began reading these stories. I have been living with RA since I was two yrs old and I am now 27. My husband and I are trying to conseive our first and are having a hard time we have been trying since oct of last year. I am on 5mg of prednisone which doesnt seem to be helping but instead giving me the lovely side effects. I have been on the med almost my whole life so I have the lovely belly and the hump on my neck and the moon face which have been causing some depression. I am also on Aleve (naproxen) and Tramadol. Dr. has stated that these meds are all ok for pregnancy. Any thoughts or advice out there? We want a baby so much its painful. I guess i am probably jumping the gun but if there is any advice anyone can give me it would be greatly appriciated.Oh and I was also on Anakinra for a while but chose to keep off of it thru pregnancy due to not enough research on the subject. Sincerely Heather
It must be so hard to wait and not know why. Have you had a hormone & endocrine workup yet? It’s still early but it’s possible it’s not RA-related.
About the meds: There is clear research on some drugs but like you said, not enough on others. Nsaids like aleve are safe very early, but there is a time when they do become risky and most will tell you not to take them. Prednisone is often taken all 9 months. There are some who have taken Biologics (like Enbrel) and there is a national registry listed of those who did well. Obviously, you and your husband & dr have to decide. I’m not sure about the safest pain reliever, but Tramadol is Category C which means it’s not known whether it can cause damage. Hopefully, if you are pregnant, you’ll be part of the majority who has a reduction in symptoms during pregnancy
I tried putting another comment on this post but I can’t see it so I’ll try again. Apologies if there’s any repetition. I’m 36, have had RA for a few years and have been trying to get pregnant for about 18 months or so now.
As I only got diagnosed around the time I was thinking about pregnancy I’ve never been on Methotrexate. My rheumy wants me to give it a try as my symptoms are not well controlled with a combination of sulfusalisine (sp?), enbrel, predisone (10-15mg a day depending on how bad I feel) and some chinese herbs. Her thinking is that having uncontrolled inflammation in my body may be making it difficult for me to conceive and if we get my symptoms under control and then wean me off MTX I may have a better chance of conceiving.
But at my age I don’t think it’s a good idea – given how long it takes to work and how long the wash out period is I would need to give up trying to conceive for about a year. I don’t think I have that luxury. Does anyone have any advice?
I’ve scoured the internet and there’s so little on this topic- which I find amazing given that most RA sufferers are female, many develop RA during their childbearing years and the drug off choice is off limits for those wanting to conceive! Or people talk about going off all their drugs whilst trying, which would be impossible for me as without my drugs I wouldn’t be able to function. Is it just the people with mild RA that manage to conceive?
ANY tips, similar stories, other posts etc. would be most welcome.
Links not working – just wanted to let you know that the link to “the Nine Month Cure” and “A mother’s tale” are both not working.
I’m 30 years old and trying to conceive our first child. I have RA and currently on Actemera and I was wondering if anybody has had a child while in this med or currently pregnant? Should I continue or stop and what should I expect? Super scared and need some help please
My name is Lindsey and I am 24 years old. I found out I had RA right after turning 21. My husband and I are looking to start a family sometime next year and I was wondering if anyone has been on Cimzia while being pregnant? Right now I am on MTX and just starting Cimzia. I am planning to stop the MTX several months before we want to get pregnant. My rheumy is pretty excited to start me on Cimzia because he said that no medication will get to the baby through the placenta. I am a little nervous about continuing medication through the whole pregnancy when we do start a family. Any thoughts?
I am curious when people talk about a safe, low dosage of Prednisone what dose is that. I am prescribed 20mg a day which works wonders for me since I never started any other treatments due to us actively trying to conceive. However I have been sticking to 15 which gives me some discomfort but bearable. I tried 10 this week since we are on vacation but was miserable after one day and don’t want to get worse. So the doubt is already setting in on weaning off it completely if I do get pregnant.
Not sure if you still are needing help with this but I am in a similar situation. I have read many studies and found that under 20mg the birth defects associated with taking steroids diuring pregnancy is very minimal. The lower you can go however the better. Also when you are trying to decrease you steroid amount try going down by a lot less and you can trick your body into not realizing that you are decreasing it. So an example would be to go from 15 to 12.5 one day then back to 15 the next the 12.5 doing this for a week or so or until you feel like you felt before you started decreasing them then just stay at 12.5 for a week then go down to 10 by doing the same thing. The large decreases sends your body into withdrawl and makes you feel awful. I personally am trying to get to 5 by the time I get pregnant which will hopefully be soon. However I am also on plaquenil and humira which is the only reason I am succeeded in decreasing my prednisone so much! I plan to stay on both of these drugs during pregnancy. Good luck with going down on the steroids!
Have you ever heard of prenatal vit causing a flare up? I am trying to get prego and I have started taking prenatal vit several different times and each time a flare seems to happen with it. I mentioned it to my doc but she said it had nothing to do with it.
Hi I have got my RA about 4 years and I’m 25 years old now . My question us I really want to get pregnant and why my Dr don’t want me get pregnant and I’m on tocilizumab and prednisolone . Can I get pregnant even if I have RA .
Shila, as per research, there is no effect of RA on fertility so there is no reason you can’t. The safe practice is to discontinue your RA medications, at least, three months before pregnancy and see if you can manage it that way. You should think about changing your doctor as he or she seems to have too strong of an opinion against it. You absolutely need to have a supportive doctor through this experience.
Infertility is much more common in PRD (people with rheumatoid disease). http://rawarrior.com/planning-pregnancy-with-rheumatoid-arthritis-disease/
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