Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Enbrel and pregnancy

Has anyone been on Enbrel during pregnancy?

I am torn what to do. My right SI joint is inflamed terribly. I am having a hard time, sitting, standing, walking with crutches, sleeping - well you guys know. My rheumy is telling me to go back on Enbrel and my OB doc doesn't want to give me the recommendation. He believes it is too unsafe during pregnancy. However, I obtained another opinion from an OB specialist that deals with autoimmune diseases and he feels it is absolutely necessary for the safety of my baby and me.

What should I do?

Shari

hi sharebear,

i'm sorry to hear that you are having such pain during your pregnancy. you are still in the early stages. i noticed that i felt much better in the second & third trimesters.

personally, i would be most hesitant to take enbrel during pregnancy. there simply isn't enough data collected to be confident that there won't be any adverse effects on fetal development. i wouldn't take the chance ... putting up with pain and discomfort in the name of delivering a healthy baby would seem to me to be worth it.

i know that you are worried about the effects of prednisone on your weight etc, but it seems as if it would be a much safer choice. at least, there is much long-term data available showing safe use during pregnancy. better to put on some weight and feel irritable than try a new drug - which, as i understand from your earlier postings - wasn't making much of a difference for you.

best of luck in making this decision,
cat

Shari,

I did a google search and found this John Hopkis Arthritis

One thing in this article that stood out was that Crohn's suffers often take a one-time Enbrel dosing regime as opposed to an on-going one for AS. Something to think about.

Just my opinion, but I would lean toward somethig that had YEARS of data, not a couple of years. Remember the drug that was given to pregnant women in the late 60s for nausea that resulted in lots of birth defects? I can't remember the name. Also, my little boy was given a drug as a baby that was later discovered to damage the heart. His heart was damaged but healed itself after 3 years. So, weigh all your options!!

I know how bad it hurts, Shari; I was 29 yrs old and my AS was undiagnosed when I carried my son (the biggest of my two). I wish I could tell you I had a miracle for you but I don't. I took lots of warm baths and tried to relax as much as possible.

Good luck, girl!! Let us know what you decide!
Holly

Thanks for responding-

My rheumy did not suggest the steroids - I am thinking it is because I was on them in the past and they did not help me - pain wise.

In terms of the Enbrel- an OB Specialist that specializes in autoimmune disease and pregnancy feels it would be safer for me to be on the Enbrel due to the flare up if it is attacking the baby.

His concern is the safety of the baby and me- My body may be attacking the baby/placenta due to the flare-up as Enbrel may prevent this from happening. I am in the process of getting more blood work done and testing to make sure that damage is being done or could be done to the baby before I decide to go back on, so that will be my deciding factor-

Thanks everyone for the support!

Shari

I'm providing any comments here as strictly "informational" for you to think about together with your doctors- these comments and abstract do not constitute advice in any way - you will need to work out your care plan with your team of doctors! It sounds like you have a knowledgeable and concerned team. Best wishes to you.

I looked through pubmed- on my limited search I wasn't able to find anything that suggests that the tnf-blockers are recognized to be harmful during pregnancy (to the best of my understanding), rather the cautions which I could find are just what you and the other folks here have said, that there just isnt enough known about their use in pregnancy because the numbers of cases are still so small-making any potential risk is still somewhat an unknown quantity.


http://www.ncbi.nlm.nih.gov/entrez/query...116&query_hl=80
Ostensen M.
Disease specific problems related to drug therapy in pregnancy.
Lupus. 2004;13(9):746-50.
PMID: 15485116
"Rheumatic diseases occur frequently in women of childbearing years necessitating drug treatment also during a concurrent pregnancy in order to control maternal disease activity and to ensure a successful pregnancy outcome. This survey reviews maternal and fetal side effects of nonsteroidal anti-inflammatory drugs (NSAID) and immunosuppressive agents in pregnant patients. The classic nonselective nonsteroidal anti-inflammatory drugs are not teratogenic, but given in late pregnancy they can induce renal and cardiac side effects in the fetus. Similar effects must be expected of the new, selective Cox2-inhibitors. NSAID should therefore be stopped by gestational week 32. Corticosteroids are frequently necessary to control rheumatic disease flares and for prevention of serious organ manifestations. However, due to an increased risk of oral clefts, high doses (1-2 mg/kg) should be avoided in the first trimester. Among disease modifying drugs, sulfasalazine and antimalarials have the safest record. Cyclosporine and azathioprine can be given throughout pregnancy if disease control requires it. Insufficient data exist for treatment of pregnant patients with TNF-inhibitors and mycophenolate mofetil. The severity of the disease under treatment decides if continuation of one of these drugs is justified. Prophylactic withdrawal of drugs before pregnancy is mandatory for leflunomide and the cytotoxic agents methotrexate and cyclophosphamide. Prepregnancy ounselling and careful monitoring during pregnancy help to tailor necessary drug treatment for the benefit of mother and child."

you or your doctors might perhaps be able to contact Dr. Ostensen, she is one of the worlds leading experts in managing pregnancy in women with rheumatic conditions including AS. She is now in Switzerland, but she used to be in Norway and in Norway she ran a center called the Center for Mothers with Rheumatic Diseases and this center made itself availabe for questions from pregnant mothers or their care-givers.
contact information for the Center for Mothers with Rheumatic Diseases:
http://www.stolav.no/StOlav/Virksomhet/B...glish/index.htm

hi shari,
as a momma of three and 2 pregnancies with AS i would not want to take a risk with a med that does not have as much data on pregnant women and effects of baby. of course this is just my personal experience. believe me i had mind blowing...get me out of this pain cycles while preggers. i was one of the unfortunate ones that did NOT go into remission. my ob said it's 50/50 if you do.

i had to use my cane, my walker, and i spent alot of time in bed in the 2nd and 3rd trimester. for me, my ob told me that i was flaring and that it was attacking my immune system not my baby's. i am not sure in your situation. i got other opinons. my rheumy, and family doc were both firm that steroids and painkillers as necessary were my choice only because of the safety of baby. a baby is growing inside of you, so it's going to cause alot of pressure and weight on your joints. unfortunately as you get bigger and further along it's going to be more uncomfortable. i dont remember how far you are along???

my doc let me take the codeine in the mid 2nd trimester on. but he wouldnt even let me take soma. he had his medical bible and he said he simply could not take a risk wiht the health of the baby and shipped to therapy. i had to pass only because of having my other little one and no sitting arrangements to allow me to go.

i know it's not very comforting to hear, but with the blessing of a little one...comes alot of lack of sleep. UGH. the extra weight of baby on the pelvis, hips, lower back, thoracic..and feet. eek...makes for alot of grumpy mommas to be!!

i personally would go on my ob's advice because you want to make sure your baby is safe. i was blessed to have a mini remission for 6 weeks postpartum. it came back with a vengeance but in least it was a splendid 6 weeks of holding my son without screaming in back pain. the si pain i am sure is testing you as well!!

the 2nd ob, what did he feel would be the safety issues for you? i know safety wise with baby. but if you were to pass on the enbrel what does he think might happen? are you on progesterone by chance?? i dont remember I know someone here was. I did with my last two. it was a life saver for my babies after much heartache of trying for so long after gianna.
ultimately sweetie, it's going to be your choice. only you can decide. i just am a bit nervous with all the new meds out there that we still dont know what could do to US much less a baby.
please feel free to pm me anytime. alessandro's birth and time was hard for me so i know how rough and terrible the pain can elevate to.
lots of love and hugs]]]
bug

Shari,

None of us can imagine what you are going thru unless we are going or have been thru it.

I was so lucky that I had 2 babies AFTER being diagnosed with AS and I did wonderful while being pregnant. I loved being pregnant anyway, all my friends think I'm nuts...lol

All that all of us can do is give you our opinion.

My thinking is 1st and foremost, continue researching, studying, asking questions, google, ask around about any other Mommy-to-be has been in your situation.

If it were me, I realize that you have the blood disorder also if I remember right, but if there was ANY way that I could take the pain I would. Have you thought at all going to the YWCA or at least spending as much time as you can in the water. By being in the water (deep enough) it takes the pressure off of your back and joints and could give your body a much needed break.

I would not think about doing ANYTHING until you are at least 13-14 weeks (not sure how far you are) because everything that is developing in the baby.

Once the baby has been completely formed, if I just could NOT take it like I thought I would die, you might talk to the Dr. about the Enbrel. Could you possibly take 1 shot every other week?

You are kind of in a catch 22...if you take the Enbrel, it might stop the inflammation and attacking your body, but it will leave you open to infection which if it were me...while pregnant I would try to stay away from ALL crowds, have hubby do the shopping, limit yourself to being around the public for the duration.

If you DON"T take the Enbrel your body could turn and attack like you said the baby or the placenta.

At this point my thinking would be these days if you can even get to 24 weeks baby has a long road but a good chance at making it. If you could make it ANY days or weeks past that..baby's chances would only get better. I am not sure what your Dr. thinks, but you might only have to have an 8 month or 7 month pregnancy.

I guess what I am saying is I know you must be hurting, but if you can do without the Enbrel do it for the sake of the baby...if you can't wait just as long as you can and then do it and have no regrets. You are doing the best you can to get your little one here safely.

Stay in constant contact with your Dr. and call them at the slightest little twinge of anything. Only YOU know your body, and believe me you are paying for it so make the Doc work for his money.

Sweetie, this is such a wonderful time in your life and I am so excited for you. My oldest has been married almost 2 years and although they have no plans at this moment for a baby, I can not wait to be a Grandma, I can't imagine holding MY baby's baby.

One little piece of advice. Start a journal for every child you have. You forget so much as time goes by. My daughter can not believe that I cared enough to write down all my visits, weight gain, feelings...I have done that for each of my children and continue to do so...you won't regret it.

Keep us updated on how you are doing.

If you ever need to talk I am here for you, I am a Momma to 4 and I would never mind being a Momma to 1 more..lol

Lisa

Sorry to hear the inflammation is rearing up. I was hoping you'd be one of the lucky ones with remission during pregnancy.

I have faith that you'll gather all the information possible and make the best decision along with your doctors.

Keep in touch and let us know how you're getting on.
gentle wider hugs,
Klem