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tested positive antiphospholipid syndrome

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tested positive antiphospholipid syndrome

Postby LauraBeck12 » Thu Dec 06, 2012 08:25 pm

I am confused and clueless and in need of all of your advice.nI found out today that I tested positive on the IGG (>30). :(

Please tell me all that you guys know about this.
If you have it too, were you put on Lovenox and LDA while TTC?

My doctor here says since i only tested positive for one anti-body that he wouldn't put me n Lovenox. and he wasn't clear at all on whether i should start LDA at conception or 12 weeks.
My peri at **** said that if i were tested positive then she would do both Lovenox and LDA.

Do you have this and end up with living and healthy children? did you suffer any losses while trying? how far along did your pregnancies go? any side effects of LOVENOX? tips? anything!?
Last edited by tree on Sat Dec 08, 2012 11:17 am, edited 1 time in total.
Reason: I had to take out the name of your hospital to comply with the forum rules.
Laura Beck, mother to Our most cherished Love - Our son- 8/1/11- 8/4/11
severe swelling and increased blood pressure started between 20-22 weeks. (ignored by medical professionals)
was finally clinically diagnosed with severe pre-e at 27 weeks.
spent 2 weeks in hospital.
He was born at 29 weeks, at exactly 2lbs. classical incision c-section.
He lived for 3 days in the NICU , autopsy said "lung failure" was cause of death.

http://clercbaby.blogspot.com/
LauraBeck12
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Posts: 41
Joined: Wed Aug 10, 2011 02:43 pm
Location: Northern California

Re: tested positive antiphospholipid syndrome

Postby LBD30 » Fri Dec 07, 2012 02:31 pm

I tested positive bf I tried to conceive since I have an autoimmune disease as well. I was put on LDA from the beginning. I was only positive for one antibody as well. I did end up like all of us on this forum with severe pre-e at 33 wks. There were clots in my placenta. I don't know if antiphosopholipid Syndrome is related though.
Lilah born 5/30/11 - emergency c-section at 33.5 weeks due to severe pre-e
LBD30
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Re: tested positive antiphospholipid syndrome

Postby Shannonlynn » Fri Dec 07, 2012 08:53 pm

Hi Laura,
I have APS. I was diagnosed in July 2011 after losing my son, Fritzy, on May 6th to PE and HELLP. I was 24 weeks along at the time. I started taking LDA immediately after my diagnosis because I wanted to conceive sooner than later because I was 38 at the time. In November 2011, I becamel pregnant. At 8 weeks I saw my MFM and started 40 mg twice daily lovenox. My due date was August 21. My pregnancy was very normal. My doctors were pleased at how things went. My pressures were excellent, never any protein, and only swelling in my feet at the end. I was scheduled to be induced the 39th week but Gavin came at 37 +4. He was beautiful and healthy. He is almost 18 weeks old and an absolute joy. I would suggest looking on the internet to learn more. I had the most luck with the Hughes Syndrome page. I plan to resume taking LDA when I finish breastfeeding, just as a preventive measure. Hope that was helpful.
Shannonlynn-mommy to Frederick Otto "Fritzy"
born May 6, 2011, became an angel one hour later
Severe PE at 24 weeks to the day
Gavin Walden born 8-4-12,lovenox, folgard, lda, prenatals. PE and HELLP free.
Shannonlynn
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Posts: 102
Joined: Thu May 12, 2011 08:45 pm

Re: tested positive antiphospholipid syndrome

Postby tree » Sat Dec 08, 2012 11:15 am

Hi Laura,
There is some good information here with a discussion of pregnancy towards the bottom:
http://www.lupus.org/webmodules/webarti ... zoneid=526

I don't think there is wide agreement on using Lovenox in women with APS antibodies. It is definitely worth discussing with your doctors if you are not comfortable with the treatment plan that they proposed. That link suggests that women who have had no previous pregnancy complications do not need to be treated, but that women who have had miscarriages or losses are often treated in pregnancy.
You can try searching for posts by a user named "Kara". She has dealt with APS. I think there are also more stories like Shannonlynn's on the forum.
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
tree
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Re: tested positive antiphospholipid syndrome

Postby LauraBeck12 » Mon Dec 10, 2012 03:41 am

VERY helpful. Thank you, friends.
I am so sorry for your loss of Fritzy <3 xo
I just want to be safe and i'm wondering why my doctors aren't pushing Lovenox?
just aspirin alone... and not starting until 12 weeks.
especially because i have been reading and the percentage of successful births is much higher in those who use both.
Laura Beck, mother to Our most cherished Love - Our son- 8/1/11- 8/4/11
severe swelling and increased blood pressure started between 20-22 weeks. (ignored by medical professionals)
was finally clinically diagnosed with severe pre-e at 27 weeks.
spent 2 weeks in hospital.
He was born at 29 weeks, at exactly 2lbs. classical incision c-section.
He lived for 3 days in the NICU , autopsy said "lung failure" was cause of death.

http://clercbaby.blogspot.com/
LauraBeck12
Registered User
 
Posts: 41
Joined: Wed Aug 10, 2011 02:43 pm
Location: Northern California

Re: tested positive antiphospholipid syndrome

Postby tree » Mon Dec 10, 2012 10:48 am

LauraBeck12 wrote:I just want to be safe and i'm wondering why my doctors aren't pushing Lovenox?
just aspirin alone... and not starting until 12 weeks.
especially because i have been reading and the percentage of successful births is much higher in those who use both.


This is a great question to ask your doctor, and I think you could use it to start a productive conversation with your doctor. You need to be comfortable with the answer or find a different doctor, especially since you have received conflicting recommendations. Good luck!
Daughter born April 2009 at 35 weeks due to Class 1 HELLP
tree
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Posts: 819
Joined: Sun May 03, 2009 01:55 pm

Re: tested positive antiphospholipid syndrome

Postby LauraBeck12 » Wed Jan 23, 2013 04:51 pm

Wanted to update this.
My doctor misdiagnosed me... he read the lab findings wrong!!!
I was relieved and upset.
-----

But now i am pregnant, 8 weeks, and tested positive for antibody "c" (little c). I'm wondering why this didn't show up before.
Does anyone have any experience or advice on this subject?
Confused and worried but hopeful!
Laura Beck, mother to Our most cherished Love - Our son- 8/1/11- 8/4/11
severe swelling and increased blood pressure started between 20-22 weeks. (ignored by medical professionals)
was finally clinically diagnosed with severe pre-e at 27 weeks.
spent 2 weeks in hospital.
He was born at 29 weeks, at exactly 2lbs. classical incision c-section.
He lived for 3 days in the NICU , autopsy said "lung failure" was cause of death.

http://clercbaby.blogspot.com/
LauraBeck12
Registered User
 
Posts: 41
Joined: Wed Aug 10, 2011 02:43 pm
Location: Northern California


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