Desperate for medication suggestions ... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Desperate for medication suggestions during pregancy

Avydoo profile image
7 Replies

Hi

I lost my baby at 24 weeks recently although I had been on low dose aspirin last 3 years and took cleaner from day 1 of pregnancy. 60% of placenta was blood clots and had prevented baby developing. This was my 4th miscarriage. I was diagnosed 3years ago after the 3rd but had never seen a haematologist or had anyone explain the results.

At a recent meeting with my obstetrician she said my lac was 110 and was positive in all 3 areas. She said the bad news was she was less than 50% hopeful of me ever having a successful pregnancy as that's themedication they use to treat the aps.

I'm obviously devastated by this and have booked an app with Prof lesley regan later this month but want to know if anyone else has had medication that worked better.......no one has ever checked my blood regularly or through pregnancy to measure my clotting etc

Any help is much appreciated

Avril

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Avydoo profile image
Avydoo
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7 Replies
MaryF profile image
MaryFAdministrator

Hi, I am really so sorry you have had such an awful time, I am glad you are off to see the professor, you will have more detailed answers and a plan to help you. It is very important that at this very difficult time you draw your friends, and relatives around you, and some counselling if you feel it would help. You must give your whole body some time to recover. When you go to the appointment, (which I am sure will be done), do get everything checked including your Vitamin D, B12, Iron and Thyroid levels alongside everything else which you know about. Do feel free to be on here as much as you like as so many other woman on here have been in your position. Sending you warm and friendly vibes! MaryF x

starships profile image
starships

I am so very sorry for your loss. I too visited St Mary's after suffering my fourth miscarriage and saw Raj Rai who was amazing and positive. I paid for a TEG test that showed that 75mg of aspirin was not enough for me and so for my fifth pregnancy I was on 150mg aspirin, celaxane/fragmin, progesterone and high dose folic acid and it worked :) I also needed a stitch put in at 20 weeks due to shortening cervix and developed gestational diabetes but thins was unrelated to APS. I had scans every two weeks from 24 weeks to check babies growth. To me is sounds like your obs does not know much about Hughes syndrome and with aspirin alone I believe the statistics are around 50% but rise to 70-80% with aspirin and fragmin.

The prof will I am sure give you a detailed plan and write to your local doctor.

Wishing you all the very best of luck and sending lots of healing thoughts xx

windless22 profile image
windless22

So sorry for your loss words dont convey how you feel but you in right place to see replies exactly what i would said.Aspirin i was advised by rheumatologist is only given on its own in pregnancy for those with positive for hughessyndrome but no history themselves of clots dvt .

Clexane and asiprin or other choices for those ladies who have suffered miscarriage.

Im the one family history miscarriage from hughes syndrome clots placenta.dvt.etc awaiting my 2nd test result 12 weeks apart from rheumatologist as have lupus.

Fact you had 1 so severe would thpught dr would see asiprin not enough but sounds like no deep or through knowledge of aps.

Big hug

Avydoo profile image
Avydoo

Thank you so much for responding, it's becoming more evident the more I have read on here that there are other ways and medications and I'm feeling more positive than yesterday! I am armed with a list of questions to ensure I don't miss anything at my appointment..... Hoping for a better future

MaryF profile image
MaryFAdministrator in reply to Avydoo

Well done you, it is tough but with the right support, new avenues will open for you. All the best. MaryF

MaryF profile image
MaryFAdministrator

Excellent idea! MaryF

schulz profile image
schulz

We've had 8 losses with some early ones on aspirin alone and one of the second trimester losses while on aspirin and lovenox. Nothing had worked. There was an article posted on this board about plaquenil helping and my daughter made it. She had severe growth restriction and was born early due to hellp, but is doing well.

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