Desperate please help!

Hi, I have been diagnosed with APS after 2 stillbirth. I've had 6 miscarriages since then. Nothing seems to work. Lovenox or the baby aspirin. Recently, I was on Plaquel twice a day. Does anyone here know of a different treatment that I don't know about. APS doesn't seem to affect me only when I'm pregnant. I hear other women with success stories but the medication/doctors recommendations don't seem to be working for me.

Thank you!

25 Replies

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  • Sorry for your losses, I had two stillbirths before being diagnosed and then had a stroke before being treated for it. Are you taking the lovenox with the baby aspirin? I was put on tinzaparin and baby aspirin during my successful pregnancy. We're your babies deaths spontaneous or IUGR?

  • Hi,

    Thank you for your reply. First still birth I wasn't diagnosed occured week 24. Second stillbirth they didn't start me on Lovenox (no aspirin) until week 16. The still birth occurred week 25. After that I have been had 6 miscarriages.

    M1-lovenox 2x a day 5 weeks

    M2- no lovenox to see if that was the cause of the miscarriage 6 weeks

    M3- Lovenox and baby aspirin 81mg 10 week miscarriage

    M4- Lovenox and baby aspirin 81mg 9 week miscarriage

    M5- No lovenox only baby aspirin 81mg 8 week miscarriage

    M6- JUST A FEW DAYS AGO. NO lovenox no baby aspirin and no plaquinol 8weeks miscarrige.

    I feel like my doctors have not created the recipe for me. I have done a million blood test and they have all the APS properties on the labs but still they don't guide me.

    What can I do? I need to get better informed to know what is out there. Or what you amazing women have used that has worked for you.

    Thank you,

    Sending you my love from Miami

  • The still birth were all blood clot related. In the placenta with Stillbirth 1 and Blood clots in the umbilicord Still birth 2.

  • Hi and welcome to our forum.

    I'm so sorry to hear of your losses.

    May I please ask you where from, as this will help us and other to help you.

    Dave

  • Hi, I live in Miami Fl

  • Have you ever tried clexane? It's a blood thinner and what I've got to use if I ever have another pregnancy. I was borderline positive for sticky blood but have had to fight to get it. Have tried with last 3 cycles of ivf, but only managed to use it in one round which was a negative. Strongly feel if I'd had this for my missed miscarriage it wouldn't have happened. Good luck for your future x

  • I'm sorry to hear of your experiences. I can't imagine what you've gone through.

    I would make sure that you're seeing an expert doctor/Team with Hughes experience, pregnancies and complicated childbirths coordinating all the care that you need, on a weekly basis.

    This is a wonderful place for support anytime you feel the need. The Admins on here have a wealth of knowledge and can point you in the right directions.

    Again, my sincere condolences.

    ~ Warm Wishes and Blue Skies To You ~

  • Hi thank you!

    Do you know how I can find an expert in my city? I live in Miami Fl.

    I really need a team that knows what to do with me.

  • So sorry for the loss of your babies, I think some people manage to have good results from Asprin and Clexane, but I am no expert on this, wishes for a better future for you

  • Thank you! =)

  • Sorry to hear of your losses.

    Just to clear a few comments up. Lovenox and clex and are the same drug but Europe has it licensed as clexane and USA as lovenox.

    I had to start the heparin the minute I knew I was pregnant for it to have any effect. Multiple losses occurred before and after diagnosis all but 1 before 12weeks.

    It's hard physically and emotionally but after 8 years we were lucky. Twin died at 9 weeks but our daughter made it to term. Then lost 3 after so she is an only miracle child. Keep trying I had aspirin until +ve then switched to heparin as they said aspirin may be the cause.

  • Hi,

    Thank you for sharing!

    I truly feel that every time I start on the aspirin after a positive pregnancy test 1 day or two days later I start having the MC. This last time I didn't take anything to see if I can wait until 10-12 weeks to start on LOVENOX and aspirin and I had my MC at 8 weeks. So at this point the doctors are clueless. I have an appointment tomorrow with my doctor to see what is the next step. I feel so lost!!! I have no idea what is the right thing to take or when or how much of it. The doctors I also feel are clueless. =( Sorry I'm just a little frustrated and upset that the doctors don't know what to do with me.

  • Hi there, I am so sorry you have had such an awful and sad time, welcome by the way. I hope others in the USA will point out consultants they have used, particularly ones a realistically not too far away from you, this will help to have the right doctors, and the right one will look at your vitamin D, Iron and B12 alongside your Thyroid, as no stone must be left unturned, I had Fragmin for all of my pregnancies. I hope you find the right support, personal to your own particular situation. Please use this forum as much as you feel able to. MaryF

  • Thank you MaryF! I appreciate your reply. I'm hoping to find my perfect recipe. Do you know where I can find specialities for APS that are not afraid of our cases? I live in Miami Fl but willing to travel.

  • Your best bet is to watch out for replies on here, and other posts, as we have many members with Hughes Syndrome/APS from USA on here, and I am sure they will pop up and try and help you. MaryF

  • So sorry for your losses, it can be so devastatingly frustrating. I had 5 miscarriages and 2 successful pregnancies. (These were 16 and 20 years ago) The 2 successful pregnancies were a result of aspirin and heparin (injected twice a day) since the day I found out I was pregnant. Back then they didn't know I had APS but a forward thinking Fertility Specialist Dr. Eddie Cofino (Chicago) told me to try it heparin and aspirin (he told me, " they don't know why this works" ) and it worked! They also told me I was borderline for the Antiphospholipid antibody so after the first successful pregnancy, they took me off of the heparin and aspirin and I had 3 more miscarriages. So I put myself back on (my husband is a doctor) and it worked. Both of my deliveries were c-sections. After the 2nd delivery, 3 weeks post partum I had a massive clot that became infected and caused an ileus (bowel shut down). So biggest lesson: find a physician expert knowledgeable in APS. I am still looking ( I live in Chicago). Your pregnancy and postpartum will need to be managed carefully.

  • Thank you for your reply! I actually have an appointment with a fertility doctor next month. Getting pregnant has never been an issue for me. Its staying pregnant. I appreciate you sharing your story. I always thought using aspirin right when I got a positive test was what was causing the bleeding. Has that happened to anyone you know. Or is that just a coincidence?

  • Aloha from Hawaii!

    So sorry to hear of your losses.

    I can't improve on the advice given here, but I am aware that your flare-ups during pregnancies are not unusual. That is what happened to me, too.

    I hope you find a team of doctors who understand the big picture, for that is certainly what is needed.

    Kerstin from Hawaii

  • Hi, yes! I need a team that is willing to work together. Not luck yet.

    Well wishes from Miami, Fl

  • Not sure if this link will help. Personally I would call and pre-qualify each medical professional for their experience as mentioned above.

    medicinenet.com/antiphospho...

    Try this also:

    apsfa.org/apsfadrlist.htm

    apsfa.org/apsfadrlisteast.h...

    Interesting maybe?

    smfm.org/members/seeing-a-s...

  • Hi Eglee21,

    I'm so saddened to hear of the terrible time you and your partner are going through.

    I'm not sure from your post if you've tried the aspirin before you conceive, and add the heparin once pregnancy has been confirmed?

    After i read your post a friend if mine popped into my head. My friend was diagnosed with leukaemia when she was a toddler, she needed a bone marrow transplant, chemo and I think radiotherapy. Thank the lord she is fine and made a full recovery; but the treatment made her completely infertility. After she got married her only hope for a family was an egg donor. Which she done with her husbands sperm and they now have a wonderful, healthy little boy!

    I know this isn't your exactly your situation but I thought to myself (if you've got the money)... maybe you could use/find a gestational surrogate. So it would be your egg, your partners sperm; but someone else carrying the pregnancy. I know it's not an ideal way to start a family - but it would be your family.

    Please note I am being completely sincere, and really can't imagine what an awful time you are having and know all too well that want for a baby. I really hope you get there soon!

  • Thank you so much for your sincere response. Yes, we have thought of a surrogate but its very expensive for us at this time. Lets see what the future holds for us.

  • You got an answer on my other post, did you see it?

  • No I can't find it.

  • I see you found it on Specialist in Miami?

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