First Shot of Enbrel

[cavansmom]

Hey Ladies!

Double check with your doctors, but my son just got the first H1N1 vaccine (he has to get a booster in a month).

I'm relatively certain the injection is dead virus and the nasal is live.  I plan to get the H1N1 as soon as I can.  It's been running rampant in the school where I work.  We pulled my son from daycare (since the beginning of October) as his allergist is very concerned about him catching it (he has asthma).  Also, watch out when your children get live vaccines.  I stopped my Enbrel for a couple of weeks when Cavan got any live vaccines (there aren't many).

http://www.cnn.com/2009/HEALTH/09/18/swine.flu.vaccine/index.html

Take care!

Lori

[startingout]

This is pretty much what I was told too.  I dont think it something to panic about.  We should arm ourselves with the info and make guided decisions for ourselves.

[momof4]

HI everyone! I just love this site and that it allows us to commicate about our RA, etc. Thanks again Lori for starting it.

Heather- it's been great getting you know you. I'm so glad that Enbrel is working for you. I know so many people that think of it as a miracle drug- me included. Since you asked about Enbrel and pregnancy, I thought I'd share my experience with you. I think I've read everything there is online about this and I always love finding women's experiences.

I got juvenille RA when I was 10 yrs old. I feel lucky to have not had it badly growing up and even ran track in high school. The older I've gotten I've watched it progress. I think once I started having kids it made a jump for the worse. I got a pretty early start in that dept. though which is good because we wanted a big family. I had my first at 24. We have 4 kids now (I'm 34).

I expereinced complete remission with the first three and conceived the first 2 just taking Naproxyn. The 3rd I was on Plaquenil and again went into immediate remission (with major flare-ups a few weeks post-partum). After the third I felt I needed to start taking something stronger because I was in major pain. My knees get so bad I can barely walk. I was on Enbrel when I conceived my 4th and stopped taking it as soon as the test was positive. That time I didn't go into remission until half way through my pregnancy. I don't know why. It makes me wonder if the Enbrel affected the way my body responsed to pregnancy. But who knows? I didn't control my RA and was willing to suffer through for her. But we also ended up dealing with her not growing well throughout the pregnancy. I read that active arthirits can cause growth restriction. She was born full term- 4 lbs. 6 oz. but she's very healthy and is now 2 and a half. She's still little (10%) and I think she may have been smaller than the average baby anyway b/c small babies run in my husband's family. But I think the arthritis contributed. So anyway, that's my experience. I think it's beneficial for the baby to keep it under control. I think there are many people who have had healthy babies and stayed on Enbrel the entire time, but the unknowns make it scary.

Good luck in your future!
Katie

[cavansmom]

Hey Katie!

Thanks for the post.  I can't remember if I said this or if we had this connversation before or not, but my rheumatologist told me that whether or not you'll go into remission changes from pregnancy to pregnancy.  I didn't go into remission with Cavan, but he said that doesn't mean I won't with future babies.

Hope you're doing well!

Lori

[Heather]

Hi Ladies,

Can't believe Christmas is right around the corner so that does mean I picked up my second box of Enbrel for December.  I honestly can't believe I've joined the "miracle drug" group but right about now I feel like I could be the spokesperson for this medicine.  And can you guys believe that I put my health on hold for a year to try to conceive only to miscarry before deciding it was time for this drug.  I have to open up a bit because I was due to deliver Christmas day actually and I would have thought the miscarriage would have been long gone in memory by now but as I put up that Christmas tree I still can't help but wonder if it was the cocktail of NSAIDS and pain meds that lead to the end of that pregnancy.  I have continued to follow everyones story's and sometimes can put myself in each of your places and I don't know why I ever thought I'd be able to take care of a baby when at that time i couldn't even make it up the steps to our bedroom.  I know now more than ever that although pricey Enbrel has brought me back to the girl I used to be!

[cavansmom]

Heather,

I can't tell you how happy I am that you are feeling so well!  Maybe with a little more time on this medication, you'll be in a better place to start trying again.  It seems to me like we all fight this.  Nobody wants to be on meds.  Nobody wants to admit how bad they feel, but when most of us get on these good meds, we forget what it was like to feel so miserable!  What an awesome thing.... that only began 11 or so years ago!  We're LUCKY to have this option.

My husband and I are going to start trying again toward the end of this month.  My brother and his wife are expecting in January, and I have to admit, I get a little jealous that this is relatively easy for them.  When it boils down though, I'm just so happy for them!!!  I have 3 nieces and 1 nephew on my husband's side, but this will be the first on my side.  I can't wait.

We're busy preparing for the holidays.  We're going to Texas to see my brother and his wife, who obviously can't travel to Colorado right now.  It's the first Christmas we're traveling with Cavan, and I have to say that the thought of getting all the presents to Texas and then back is almost too overwhelming to think about.

Be well everybody, and Heather: I hope you're able to enjoy this holiday season and be happy with the thoughts of "what is to come" for you.  I'm so happy for you.... and proud!

Be well!

Lori

[Heather]

Hi Everyone, hope the holiday season went well for your families, it came and went so fast as it seems to happen every year.  I wanted to post some "new" New Years news.  Wednesdays are the days that I have scheduled to take my Enbrel shot and I really struggled with the decision today.  You see yesterday morning I took two different HPTs and both were positive.  I raced myself down to the lab to make sure that it wasn't false hope and received news today that my levels were only 5.2 which seems considerable low but I think I am only 4 weeks I tested 15 dpo so I will go back Friday in hopes that it has double.  As you may have read in some of my previous posts I thought my Dr's were embracing the Enbrel and me continuing to take my injections but both my ob/gyn and Rheumy said don't take it.  I'm back and forth on this decision I only have two shots left in my prescriptions and thought I'd be comfortable finishing my injections.  I just wanted to post because my husband is away for the next 3 weeks for business and based off of my previous miscarriage I didn't want to get our families excited again for a let down.  I appreciate any words of encouragement and just thoughts on my situation. Thanks everyone and heres hoping that the little one is well on it's way!

[Heather]

Well ladies I think I spoke to soon, last night at midnight I had an early loss  .  I keep kicking myself for even thinking it would come to fruition.  I did not take the shot yesterday although I feel that it has nothing to do with the loss.  After meeting with the doctor today I was further along than they thought which was 6 weeks.  I will take my next shot this coming Wednesday and we will try again.

[cavansmom]

Oh gosh, Heather, I'm so sorry.  This has to be so hard.  I wish I had something good to say, but there's just nothing that can be said that really makes this any easier.  I'm so sorry I missed your post yesterday.

What I generally see with what women have said from their rheumies is typically:
Enbrel is fine OR
Stop Enbrel 2-6 months before trying to conceive OR
Take Enbrel until you ovulate, then stop until your period.  If not pregnant, start again until ovulation.
Of course, there are a lot of other opinions.  These are what I seem to hear the most though.  Talk with your docs some more if you have any questions.  Of course, there is always risk, and you want to be informed.

Please keep us up to date.  I hope you are feeling ok.  I know these times can be quite hard.  You're in my thoughts and prayers.


Lori

[Heather]

Thanks Lori I really appreciate your thoughtfullness and kind words.  It's Wednesday so I am taking my shot I will be switching to a new doctor who has more experience with my diagnosis possibly high risk not sure still doing research.  I just can't believe I've been a patient at his practice for 9 years and he wouldn't even see me because of the meds I was taking, who does that?! All well probably better for me in the end.

[cavansmom]

Hi Heather,

I'm get more and more surprised by what doctors won't do since we started this website.  I think it's best to find a doctor who you share your beliefs with and can answer your questions.  Keep in touch and let me know how it's going!

Lori

[Heather]

Thanks,  I wanted to tell everyone that I will be going to a maternal and fetal medicine, ob/gyn the third week of feb hopefully we get some tests.  I will keep posting!

[cavansmom]

Good deal, Heather!  Let us know how it goes!

Lori