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Hughes Syndrome APS Forum

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recently diagnosed with aps

hartnell5 profile image
11 Replies

hello im a first time blogger, i have just been diagnosed with aps im on aspirin and currently pregnant with my 8th pregnancy, i have had nurmerous problems with pregnancy in the past for instance i had severe eclampsia with my first child which is my eldest then i had endless miscarriges before becoming pregnant with my 1st daughter which i was on aspirin for the entire pregnancy. Then i had more misscarriges before i became pregnant with my 2nd daughter but the hospital did'nt give me aspirin this time as i had a healthy daughter and my consultant said i would be ok but unfortantly i was'nt ok and sadly lost her at 33weeks pregnant since then i went on internet and read up about aps went to my gp and they referred me for testing and it came back saying i had aps. but i found out i was pregnant during testing so its been put on the back burner for a while and i got consultant led care this time round so hoepfully it should be ok. But im very scared just in case it happens again. has anyone got any advice or has anyone been through a simalar ordeal many thanks

sabrina x x

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hartnell5
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emmaj profile image
emmaj

Hi and welcome, hope we can all be of some help here. Congratulations on the strength it took to try again, myself and many others have been through it. Ive had 5 pregnancies and two healthy children, and a lot of heartache. I think you need to be under consultant led care which you say you are, and seek a heamotologists help - and demand heparin injections from now on. Aspirin isnt always enough, i think aspirin alone raises the chances of a successful pregnancy but heparin (stronger anticoagulant) raises it again from 20% success rate to 80%. I wish you all the success in the world, and a positive outcome, and although the baby will never begin to make up for the ones that didnt make it the only way i could deal wih it was to think that my little angels were my son and daughters little guardian angels that lit the path for them to find usxx

hartnell5 profile image
hartnell5

i will do im seeing my consultant on 18th may so i will demand herpirin as i had it after the stillbirth and had lots of problems with possible clots after wards thank you for advice im very scared as i wanna bring my baby home this time round x x x

pumpkincake profile image
pumpkincake in reply to hartnell5

I have to agree whole heartedly with Emmaj...YOU should be on Heparin (actually Low Molecular Weight Heparin LMWH) injections for the rest of your pregnancy!!

Here is a link to Management of Antiphospholipid Syndrome

in Pregnancy. Maybe print this out and take it with you to your appointment.

medicine.medilam.ac.ir/Port...

•Subcutaneous LMWH (enoxaparin [Lovenox]) may also be used for obstetric or thrombosis prophylaxis. Lower doses (20-40 mg/d SC) are used to prevent fetal loss, while higher doses (1 mg/kg q12h or 1.5 mg/kg/d) are used for thrombosis prophylaxis in patients (pregnant or nonpregnant) who have had prior thrombotic events.

I have been in your situation as well...as have many of us. I feel for you and I pray you get through perfectly well. Please let us know how your appt goes on the 18th.

Take Care,

Beverly

jessielou profile image
jessielou

Hi sabrina

welcome and glad you found us. sorry to hear you have Aps and so very sorry for the loss of your little ones.

I too have experienced losing and know how it hurts.

I agree with what others have said, you definately need a good haemotologist involved in your care and heparin injections as well as aspirin to support your pregnancy.

Be pushy hon, we have to.

Good luck and everything crossed.

Take care gentle hugs love sheena xxxxxx :-) :-) :-)

daisyd profile image
daisyd

Hi really sory for your losses.really hope everything goes well this time.

Have you got a good Gp perhaps he /she could prescribe Heparin / or other anticoagulant injections, so you could be on that before your Hospital appointment along with the Asprin.

Take some information with you he could always get incontact with a Haematologist for you.

The injections are easy do do, very small needle so nor really painful.

Good luck

Karen xx

hartnell5 profile image
hartnell5

thank you all im going to book a doctors appointment tues as i don't want to go through another loss i wnt to bring my baby home this time round

WELCOME!

daisyd profile image
daisyd

Please keep us informed

Karen xx

MaryF profile image
MaryFAdministrator

Hello there and a big welcome, You had had a very stressful time, and now hopefully with the accurate knowledge and right medical team, things will be significantly better for you. At times some teams really are not skilled up on this, as you have found out. The best of luck with your pregnancy, well done on your own research, and plenty of support on here, and sorry you have had such an awful time. Mary F x

hartnell5 profile image
hartnell5

hello all i fell down the stairs on tues after feeling really dizzy and had a serious migrane. Spent hours up the Norfolk and Norwich university hospital and they said it could of been down to my aps, they want me to have a word with my consultant next fri 18th may as they think i should be on heperin injections at night aswell as aspirin as my symptoms are getting worse as the pregnancy progresses. So i will keep you all updated as soon as i know. :)

hartnell5 profile image
hartnell5 in reply to hartnell5

the baby is fine considering i fell down the whole lot of stairs im really briused which came out in seconds after i fell, i hate briusing easy :(

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