ButterBean w/ AS

2dogmom

Hey ButterBean - I saw in a previous post that you have AS,  I do too.  I've never seen anyone on here w/ AS.  They've actually have me diagnosed as atypical AS with RA similarities for over five years now.  I am not pregnant, but we'll be trying for #2 in a bit.  I had to be on bedrest b/c of pre-term labor starting at 26 weeks with my DD (spent a lot of time on this board then).  But ended up with a very healthy baby girl, who is now a toddler.  I'm glad Enbrel is working for you.  It worked for me (combined with MTX) for a bit, but not anymore.  I'm off everything right now b/c we'll be TTC soon.  It's rough.  I just wanted to reach out since, like I said, I've never seen anyone on here with AS before.

Take care and good luck!

ButterBean13

I didn't think I'd see anyone else on here with it either!  I don't think it is as common in women as it is in men.  Lucky us.

 I was TTC for about six months without any AS treatment... it didn't really work out too well, I had one miscarriage during that six months and no other BFP's.  The AS got so bad in June that I was disabled.  I ended up going to my rheumy and begging her to put me on anything that I could keep taking while TTC.  She said my safest bet was Enbrel, because I don't do well on steroids.  I started it, and I could feel it working the next day.  Three days after I started Enbrel I O'd super early (day nine when I usually O on day 18) and we got pregnant!  I think all the inflammation in my body was preventing me from having a conceiving and holding on to the pregnancy.  So I've been on it since conception.  Risky, I know.  But I did a lot of research, and my rheumy, RE and OB are all ok with it. 

Now, the enbrel is working, sort of.... I was really pleased with it for a while, but then I started flaring pretty bad.  It's basically keeping me from being disabled, but not by much.  But I'm still working... I'd be screwed it I wasn't on it.  If I wasn't pregnant, they probably would want to add something else to the enbrel.

My docs are watching me like hawks.  They have me on baby asprin and lovenox for clotting issues.  Their doing U/S every 2 weeks.  Also, they plan on inducing me as early as possible, because apparently the auto-immune stuff contributes to "aging placenta" and they don't want me to go the full 40 weeks.  I may end up on bedrest.  My mom has psoriatic arthritis and was on bedrest due to early labor with my sister.

Ok, so questions for you....did you go off all meds while pregnant?  Did you have trouble TTC?  Did you flare while pregnant, or after pregnancy?  How did you control the pain?  Do your docs think your early labor was related to the AS?  Have you heard of this "aging placenta" business?  What meds are you on now....or what meds where you on before you stopped them?

Phew!  Ok, sorry for the length... I'm totally psyched there is someone to talk to with AS!

Take care and good luck TTC!

2dogmom

Hey BB!  I am completely amazed to find someone else w/ AS...on a pregnancy board at that.  I occasionally check the high-risk board b/c I spent so much time here during my pregnancy and wished someone was out there going through the same stuff or at least knowing what I was going through day in and day out.  I'm so sorry you've had so much trouble TTC but so happy for you that you're at 10 weeks and so far so good!  

I did go off all meds three months prior to TTC and didn't take anything while pregnant...which may or may not have been the right thing to do, in hindsight.  Although nothing was working for me at the time anyway (same thing this time around,so there wasn't much reason to stay on them).  We conceived on the first try...we were incredibly blessed.  I did not go into remission during pregnancy like some do.  I have read that it's more common w/ RA than AS to go into any type of remission.  Unrelated to AS,I had morning sickness the entire pregnancy...but it added to the strain on my body.  I flared really bad going into the 2nd tri.  I went to working p/t and on bedrest p/t at 26 weeks because of pre-term labor (specifically contractions with cervical changes).  My doc told me that it may or may not be AS related from a medical standpoint...but her personal belief is that my body was going through too much and couldn't handle it.  At 30 weeks we were in L&D for pre-labor.  They shot me full of steroids to help baby's lungs mature and I had to stay five days until constant monitoring.  They were able to keep labor at bay with strict bed rest (at home, thank goodness) and taking terbutaline every four hours, round the clock.  And if I missed by even 15 minutes I'd start contracting.  I had to go to the hosp a couple times for monitoring and had u/s done every other week...then every week.  At 37 weeks my doc let me off the terb and gave me one week to go into labor on my own.  I had lots of contractions but one week passed and I hadn't gone into official labor.  She induced at 38 weeks, with hardly any pitocin.  Her reason for inducing was the aging placenta...so yes that was true for me.  My labor was fairly quick, the epi was amazing.  And my DD was healthy and happy.  My doc said that the placenta looked like it was 43 weeks old, at 38 weeks.  She showed me, not that I knew what the heck I was looking at at, but I wouldn't have wanted to live in it, glad they induced...tmi?   I did not breastfeed so I could get on meds right away.  My back and hips were in pretty bad shape after pushing for two hours and my AS was somewhat flared...but not aweful in the whole scheme of things.  After all that...I'm ready to do it again in a couple months...so that should tell you that, in my humble opinion, it is worth it a milion gagillion times over! 

I had been on Sulfasalizine (didn't work), then Humira for a bit before DD (wasn't working, but I may not have given it enough time).  And since DD I was on Humira, which still didn't work.  Then Humira w/ Plaquenil, didn't work.  Then Enbrel, which kinda worked for one month.  Then Enbrel w/ methotrexate which was AMAZING for two months...then stopped.  Any that worked took at least two months to start working for me.  Pred works for me for short term things...so that's my back-up plan with this next pregnancy.  I'm doing alright w/ no meds right now...alright for someone with AS I guess...you know how it is.  I use a cane quite a bit, and use my handicapped parking tag more than I wish I had to, but I get around.  And you'll be amazed at how your child adapts to you, not being able to do some things.  My daughter amazes me every day with what she does to help me out at such a young age, I can't even begin to explain it.  That's why I'm ready to do it again.  And I'm hoping that not having a demanding corporate job while be pregnant and having AS will be beneficial this time around.  It'll be tough w/ DD but DH and I have an amazing support system of fam and friends that we can lean on if the need arises. 

Please keep me posted on you and your pregnancy.  Take care of yourself and just PM me if you need anything, I would be happy to email you and keep in touch, since our commonality is so rare and we're in the same boat. 

Take care!