Ankylosing Spondylitis

Sarh - posted on 01/15/2009 ( 5 moms have responded )

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Do any mother's have "Ankylosing Spondylitis"? I am 19 years old and I have just been diagnosed with this. It is so hard to become motivated to do things with my daughter. I can barely pick her up, carry her, open her Juicy Juice contain, ETC.

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Laurie - posted on 01/30/2009

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I was on humira for over a year and did pretty well on it.  It stopped working mid way through my last pregnancy, and my rheumatologist thinks I developed antibodies to the medication.  They sent some blood off to be tested so we would know for sure.  They've since switched me to remicade, and I LOVE it.  It works much better and I don't seem to be sick as frequently.   I would ask about the remicade, but it may be that they want you to try one of the others first.  I'm not familiar with the enbrel, never having used it, but I can tell you the humira is a horribly painful shot.  Worth it, I suppose, but if the enbrel is as painful there's no way I'd pick that one!  :)  



 



Keep me posted!



Laurie

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Erin - posted on 02/20/2014

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Hi there, just wondering if any moms with AS have continued breastfeeding while on medications?

Jayme - posted on 09/14/2012

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I do! How are you doing since this post its been 3 year. My son is 2 and its been a long battle for me. Still waiting to get on the right meds. I totally have difficulties being a good mom who is motivated. I have a very hard time holding my son he is 30lbs and is very active. I am so afraid that he is going to get hurt because I am not fast enough to move to stop him. I hope you are doing better now.

Sarh - posted on 01/18/2009

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Thanks so much. I finally found a rheumatologist in my area that accepted my insurance. She is the one who found my AS. I am currently on Celebrex. I guess my muscles are real tense from the inflammation and stuff because when I take my Celebrex it REALLY relaxes my muscles at first I continued to try and research this medication because it kind of felt like I was on a muscle relaxer or narcotic.

My doctor wants me to choose between Enbrel and Humira. I haven't heard much about either one. They both seem to cause the same symptoms and they both seem to raise your risk factors for the same things such as the M.S., Lymphoma, etc.



Thanks again so much!

and you too can contact me personally if you think that would be better for our conversation.



P.S. I was wondering if you have used the injections. If so what one and how was your "experience" with it?

Laurie - posted on 01/16/2009

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I've had AS for over a decade and have six beautiful children.  It's tough, and I understand how horrible it is to not be able to do the things with your daughter that you want to do.  Have you seen a rheumatologist yet?  The new biologics (enbrel, remicade, humira) are wonderful; you'll probably have to try other medications first, but eventually something will help.  The pain will probably never go away, but it will become bearable.



Whatever you do, DO NOT see a chiropractor for your pain.  Joint manipulation is not an acceptable treatment for AS for reasons I don't fully understand.... but definitely check with a specialist before you pursue anything like chiropractic care.  Also, you might look for a good spine specialist; they tend to be more personable than rhuematologists.... 



Feel free to contact me privately if you have any questions or just need to vent....



Laurie

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