NEW members, post here first!

[cavandad]

Hi all!

Welcome to our site!  We are so glad you are here and invite you to join in on any topic of conversation you'd like.  We really value each other's input here and enjoy being information and support for one another.

As our site has grown, we have developed some growing pains, which basically means SPAMMERS!  We don't like no stinkin' spammers!  So, here's the deal.  In order to weed out as many spammers as possible, you need to make one post in an existing thread OR you can make a new thread, but only under this topic (new to momswithra).  After that post, you will move from a Newbie to a Toddler Member.  Then you are free to post wherever you'd like.  My recommendation would be to join in a conversation and introduce yourself OR introduce yourself here.  I check the site frequently and will want to meet you!

If you register and do not make a post for 1 week, we reserve the right to remove your name.  You can read any of the posts without registering, so don't feel the need to register unless you want to post.  We also reserve the right to remove any posts that contain spam or have topics inappropriate for this website as deemed by us.

We thank you for keeping in the positive spirit of this site!  Thank you!

Cavan's Mom

[north08gmom]

Good Morning,
  My name is Tina.  It is fine if you address me like that in posts.  Oh, I'm not at all familiar with this process.   I just know that I accidentally stumbled across this site and feel you need me as much I need the rest of you.      That's not meant to be arrogant.  I just saw that so many people had questions about Enbrel, pregnancy and breastfeeding, that I thought I'd share my experiences with you info if you'd like it.       You see, I've had active arthritis for all 7 of my preganancies.   We only diagnosed RA during my 6th, otherwise it was all about anti-inflammatories.  I was only 2 months along when we finally made a formal diagnosis of RA.   My bloodwork never showed an elevated factor, so one day when they were drawing off fluid from my knee, they decided to check that out.   So, thankfully, a doctor took a different route to diagnose me.   I say thankful because I was not able to walk to my corner, and I live on the corner!
  Because I was pregnant I was able to pass by all the "older" medications and go straight to Enbrel.  Of course, I had to wait until insurance said "yes", but it did not take long.
  I immediately was asked to become part of a study.  Yes, the research info was tedious, but I feel that it was so worth it for other women.  And, the main research doctor came to my hometown after the baby was born--I mean Mr. Big.   I was thoroughly impresses, and so were the physicians in our hometown.  We were able to organize and informal class for the pediatricians, as he was a leading research doctor in birth defects.    So studies, can have some lovely outcomes!   must end here for now 

[cavandad]

Hi Tina,

Welcome to our site. I want to clarify something you wrote.  Did you start Enbrel during your pregnancy?  If so, how did your doctor feel about that?  When in the pregnancy did you start it, and how often did you take it?  Did everything turn out ok?  What study were you in?  Are there any published results yet?

We entered the OTIS study and had a doctor visit our home, which was great.  He said up until that point, I was the only patient he had seen that took Enbrel throughout the pregnancy (although not as often as the prescribed dose).  Of course, that was almost 4 years ago now.

Thanks for posting.  Hope to hear from you again.

Lori
MomsWithRA.org

[north08gmom]

Hi Lori,

I started Enbrel when I was 9-10 weeks pregnant.  The dr was very proactive and insisted that this was the only thing he'd consider during pregnancy.  He was confident that insurance would go for it, and they did.  It has been nearly 6 years.  I take 2 shots a week, administered by myself.  I have only had discomfort twice.  I did try the epi-like injection, but that hurt, so I went back to 2 times a week, and am very happy.    I can only say that I've experienced site puffing, bruising from the shot.     I'm not even certain what other side effects there are.   Now, my disease is taking off again--included methotrexate now.   But, I'm not happy.  I swear that I feel worse, but the doctor feels that that is not a side affect.    Maybe I'll address that on another day and ask for advce.
Gotta run,

Thank you for the site, Lori
Tina

[cavansmom]

Hi Tina,

You know, there seems to be a lot of new research out there on methotrexate.  I'm having a hard time with that as it seems that there wasn't this much push for metho BEFORE the new biologics came out.  Many people have a lot of success with just methotrexate or metho with a biologic.  I do, however, worry that somehow insurance is behind this new push for metho research stuff, as it is cheaper than the biologics. 

This is solely my own opinion, but I worry about that medication a lot.  It has been suggested that I add metho to my Enbrel, but I was on methotrexate for 14 months before Enbrel existed.  I had strep throat almost the entire time I was on it, along with other infections.  At the end of the 14 months, I went into very serious liver failure.  It scared me to death, and I never intend on going back on that medication. 

I hope for those that are receiving methotrexate that it continues to work well and be a cost-effective treatment.  Take your liver function tests seriously though.  You don't want to go messing with that!

It's very interesting that your doc let you start Enbrel during pregnancy.  From the women on our site, that doesn't appear to be the case typically.  Most doctors seem to want to stop TNF drugs during pregnancy.

I hope your meds kick in and start working for you!  Please keep in touch.

Lori

[SEM]

Hi everyone,

I am very excited to have found your support group.  I am a mother of 2 with RA - I have a 2.5 year old son and a 6 week old daughter. I have had RA for 7 years and had a terrible time during my pregnancies with severe joint pain and limitation.  I have also had a terrible time with post-birth flares - one of which I am in the middle of now.  About to recommence Enbrel.

In fact I had such a difficult time coming off medication in order to conceive that I spent 3 years writing a book for women and men travelling the journey to parenthood with arthritis, in the hope of filling the gap in arthritis information in this area.  My book was launched 2 weeks ago in Australia.  While I certainly don't profess to have all the answers, this new publication goes some way in helping women and men feel less alone on their path to parenthood with chronic arthritis.  It shares not only my experience but the experiences of women and men from around the world who opened their hearts to me for the benefit of the reader.

The book is called "Arthritis, pregnancy and the path to parenthood".  You can read about it on my website. I wanted to share the details of this resource with you as it is the first book of its kind worldwide and answers many questions us moms and future moms with RA ask ourselves.  Written by a mom with RA for moms with RA, as with this fantastic support group, there is a sharing of information and experience that you cant get from your doctor - only from those who have been there before you.

I look forward to meeting some of you and learning some tips as I continue to learn how to be the best mom I can be despite my RA.

SEM

[cavansmom]

Hi SEM!

Welcome to MomsWithRA!  You wrote a book!  How exciting!  I actually thought about trying my hand at that, but it just seemed too overwhelming a project.  Do you live in Autsralia?  Are there any plans to market the book elsewhere?  What is your website?  I'd like to check it out.  Good luck to you!  I look forward to hearing more.


Lori
MomsWithRA.org

[elle]

Hi everyone,
I was trying to get some information the the web regarding RA and pregnancy and found your site.
I was diagnosed about 6 months ago and have 2 boys, 6 and 2 years old. I just found out I am pregnant again, so this would be my 1st pregnancy with RA and I am a bit scared and apprehensive. I had uncomplicated pregnancies the 1st 2 times, and natural birth with both.
I am hoping that this time I would have the same, but I am a bit scared that I won't.
I am in a flare up at the moment (I'm about 7 weeks pregnant), and the only meds I'm taking at the moment is Celebrex, I am not sure it's safe to take during pregnancy, but without it, i am in severe pain.
Looking forward to chatting to you guys.

[SEM]

Hi everyone,

Thanks for your support regarding my book.  You can read more about it on my website - www.suzieedwardmay.com

Congratulations Elle and I totally understand your concerns regarding your pregnancy.  I flared severely during my 2nd pregnancy and had a total of 65 cortisone joint injections between weeks 12 and 37 of my pregnancy just so I could look after my toddler, roll over in bed, squeeze a tube of toothpaste etc.  It was so hard, but the injections worked.  I was taking Celebrex prior to falling pregnant but didn't take it during pregnancy. My daughter is now 6 weeks old and I am flaring badly and back on Celebrex, oral prednisolone and about to recommence Enbrel - while breastfeeding.

The book - "Arthritis, pregnancy and the path to parenthood" answers many of the concerns and questions you will have about before and during pregnancy and also the post-birth period and looking after your newborn.  It covers not only physical concerns but also emotional ones.  I am in Australia but can definately send books to anywhere in the world.

I have had some really positive feedback from both women with arthritis and family/friends of people with arthritis about the book.  I have a lot of support from Arthritis Australia and I am scheduled to travel to other parts of Australia to give some talks about it, as there is limited information available on this topic over here too and people are very excited to finally have a comprehensive resource.

I do have a marketing plan to promote the book in the USA, Canada, UK, New Zealand and other countries but of course word of mouth is always one of the best ways of getting information out to the people who need it.

I wrote it for people like us - women with RA - so I hope that it gives some comfort and helps others feel less alone on their courageous path to parenthood.

SEM

[cavansmom]

Hi Elle!

Welcome to MomsWithRA!  I'm glad you found us.  If you haven't seen the main part of our site, momswithra.org, you may find some useful information there for pregnancy and RA.  It walks through talking to your doctor about pregnancy.  Wow!  You must have your hands full with a 2 year old, a 6 year old, and one on the way!  My son is 4, and they have so much energy, it amazes me!  It must be challenging keeping up with your little ones if you're not feeling well.  I certainly had that problem when my son was born.

I can't give medical advice, as I'm not a doctor, but I am big at pushing moms to have discussions with their physicians.  I did look at drugs.com on celebrex.  It said it's a class C drug, meaning it may harm baby.  It said something about harming baby the last 3 months of pregnancy, but it didn't say whether or not earlier in pregnancy was safe.  Here's a link: http://www.drugs.com/celebrex.html.  I haven't read much specifically on celebrex, but I know other NSAIDS can cause heart damage to baby, so I'd get to a physician and find out quickly.  There may be something else you can take.

Some women go into remission during their pregnancies, usually in the second or third trimester.  Unfortunately, there's usually a flare 4-6 weeks after baby is born.  It would be good to see your doctor about how best to handle that, and to think about breastfeeding (if that's what you want to do) as some medications get into breastmilk.  The main part of our site has lots of information on things to think about with pregnancy.

Please post again.  We'd love to hear how you're doing!  Take care!

Lori
MomsWithRA.org

[momnpop]

Hey guys!

Name's momnpop I am a single mom living in NYC and I came across your forum by chance.  Great forum and I look forward to posting here!

[cavandad]

Momnpop,

Do you have RA?

Lori
MomswithRA.org

[jojo]

 
wow what a great site this is!
I'm doing some university research, and have stumbled across this. I needed you six years ago!
My name is Jo and I live in the UK and have two gorgeous boys Ellis who is almost 5, and Lewis who is just three.
I was diagnosed 20 years ago aged 19, and have found being a parent with RA incredibly hard work. The constant exhaustion of parenthood combined with the overwhelming fatigue of are a is a real problem for me.
despite going to see my rheumatologists, and reproductive clinic, I struggled to conceive for 12 months as I was on rifacoxib, a drug which no one told me could prevent me from getting pregnant. It was only by accident that I realised that this might cause some problems and as soon as I came off the drug I was pregnant with Ellis.
throughout both pregnancies remained on prednisolone, and was told that the only side-effect could be a large baby. However both my boys were healthy weights of six and seven pounds.
Like many people have said about today I also suffered with quite bad flareups after principles were born. This was a real struggle for me, and I found I had very little support for the medical profession. Family were great, but they couldn't be there at five in the morning when I needed to pick my sons up and simply couldn't.
As the boys grow up things I find most helpful, include ensuring that I nap at lunchtimes when my youngest has his sleep. Moving them into the beds as soon as possible so that I don't have to  lift them into their cot.I'm talking to the boys about why I can't do things, and this is really hard. They are both very understanding, and my mommy says please don't hold my hand today boys because it is painful, they understand that.
I now take methatrexate by injection, and this has been a real turning point for me. Had we are reservations about going onto this talk, but am so pleased I did. It truly has been life changing. It means that I can now walk the boys to school in the mornings, ride a bike on a good day, go swimming, and try to keep up with their boundless energy.
please excuse if this reads a bit oddly, I'm using a new voice activated typing system, and only just getting the hang of it.

[10lilSarahs]

Hi!  I'm so glad I found this site!  My name is Sarah and I'm 27.  I was diagnosed with RA (thought it was Lyme's), less than a week before I found out I was pregnant with Baby #2.  We have a little boy, Linus, who turns 2 in September with the second due in November.  The Rheumatologist prescribed hydroxychloroquine, saying it was safe for pregnancy, but when I went to pick it up from the pharmacy, along with a prenatal vitamin, I was told by the pharmacist it was not.  After calling my OB/GYN, and having him recommend against it, I decided not to take it.  I'm currently not taking anything but Ibuprofen and not having very much pain, except for slight hand and foot pain, usually in the morning, so I consider myself very lucky.  I've read it's common for there to be less pain during pregnancy with a flare up after delivery. 

Unfortunately since my pain has been 'out-of-sight, out-of-mind' I haven't thought much about what we'll do after delivery.  My husband started to be concerned about breastfeeding and possible medications I'll be taking, so we decided we should start our research now.  I'm very glad to have found this site and to be able to talk with others who are going through/have gone through all this.  It's nice to know we're not alone with these concerns.  Also, I can't wait to check out Arthritis, Pregnancy and the Path to Parenthood--I was looking for a book like that!!

[cavandad]

Hi Sarah!

I'm so glad you found us too!  Wow... I'm so sorry your diagnosis came at such a difficult time, but congratulations on baby #2!  Horray!

I would talk to your OB about the ibuprofen.  I think it's safe earlier in pregnancy (although I think it increases the chance of miscarriage).  Later in pregnancy, I think there's a high risk of heart complications for the baby.  I would get the full scoop on that (of course, I'm not a doctor, so I can't give medical advice.  My advice always is to talk to your doctor).

I'm so glad to hear you're not in major pain.  Many of our first time posters are writing because they're in pain from going off their medications to get pregnant.  I hope things stay very minor for you.

The breastfeeding decisions are very difficult.  Of course all the medical literature says that it's best for baby.  There is some literature out there that says it's not good for moms with autoimmune diseases.  Strangely, if you don't have RA, there's some research that says breastfeeding decreases the likelihood of getting it.  If you haven't seen it, you may want to visit the main part our our site: http://momswithra.org/index.php?pr=Breastfeeding  There are some other pages in there that walk about what to think about with delivery and meds and such.

Let me know how else I can help!  We moms have to stick together!  Take care!

Lori
MomsWithRA.org