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Hughes Syndrome APS Forum

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sarahlou1801 profile image
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as most of u are aware I have lost 6 babies due to aps. the last on clexane and aspirin at 9 weeks. the baby didnt develop past 6 weeks. but still survived to 9. we are thinking about trying again but are looking at bettering treatment this time. all the other times I wasnt advised on folic acid does anyone know if this will improve my outcome my dr never told me to take it and I wasnt sure at the time if I could. but this time want to try it as one last shot at having a baby. any advise anyone plz

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sarahlou1801
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Maria39 profile image
Maria39

Hi Sarahlou,

I also lost 5 babies, most recent this year on February. I was 9 weeks pregnant. During all my five pregnancies I was taking folic acid, so your gp shoud told you to take folic acid, independently if you have or not aps, in fact it's good if you take it months before you fell pregnant. Taking folic acid it helps to prevent malformations in the baby, but you still can have miscarriages.

My advice to you... change your gp specially if has tell you anything about folic acid.

If you still want to try for a baby start to take folic acid, it's not going to make you any harm.

sarahlou1801 profile image
sarahlou1801

thankyou for your response my last loss was january :( I took folic acid with my 2 children I do have but that was years before I was diagnosed. was unsure the last times if it affected the aspirin or clexane will buy some and take while ttc

tassie profile image
tassie

Saralou and Maria39 I'm so sorry for your losses.

I too have lost several babies and it is a dreadful journey.

The folic acid is fairly standard for pregnancies and won't affect the aspirin or clexane but always check with your pharmacist if unsure.

It's also worth discussing with your medical team what else you can do to increase your chances of a healthy pregnancy. Perhaps starting the aspirin and clexane prior to getting pregnant or at least as soon as pregnancy is confirmed. Some doctors will make you wait until a heartbeat but many women have found this to be too late.

There are also a couple of other medications that might help such as plaquenil and prednisolone so worth discussing other possiblities with your doctors. There may also be others now as well.

All the best and keep us updated on how you get on.

Hi so sorry for your loss. I too have miscarried. i took asprin and did fragmin injection which were successful. I started asprin and folic acid when we started trying for a baby then fragmin at 6 weeks pregnant. Hope this is helpful to U and good luck for the future xx:)

starships profile image
starships

I and so sorry for your losses. I have lost 4 babies and one while on aspirin at 12.5 weeks although baby died at 10.5. I am currently 26 weeks pregnant so not a success story yet but hopeful. The NHS wanted me to wait to have a second tri loss before giving me fragmin so I paid to see Raj Rai at St Mary's and he did a test which proved 75mg was not enough and I needed 150mg aspirin and fragmin with extra strength frolic acid and cyclogest progesterone support. What does of aspirin and fragmin where you on? He also said if we suffered another loss to come back and see him as there was other help they could try. I would recommend seeing him if you can as he is excellent and the leading expert on the UK if not the world on pregnancy loss due to Hughes.

Good luck xxxx

MaryF profile image
MaryFAdministrator in reply to starships

Thank you for your advice in this thread, which is very useful, and good luck. MaryF

MaryF profile image
MaryFAdministrator

Hi there, you are getting some good feedback from ladies who have been in the same position as you, or are currently going through similar, which is why this forum can be so supportive and useful. I wish you all the best. I had help very early on with my first pregnancy due to what had happened to my sisters and also my own suspicions, so I never went through the endless miscarriages, although one of my sisters did! Please let us know know how it goes. MaryF

Hopingforababy profile image
Hopingforababy

I also paid to see Raj Rai at St.Mary's. He was excellent as the previous post states. He will do something called a TEG test for clotting to see if you need 75mg or 150mg aspirin as the post above also mentions. For me I only need 75mg. I started the heparin really really early and I think that's what's made the difference. I'm currently 28 weeks pregnant so again not yet a success story but hoping to be! Best money I ever spent though seeing him! Good luck.

magicandmayhem profile image
magicandmayhem

I'm so sorry for your losses.

I had a dozen miscarriages before I had my babies and know how devastating it is. After I was diagnosed with lupus anticoagulant 18 years ago, my doctors put me on daily baby aspirin throughout the pregnancies and pregnyl shots for the first trimester. Pregnyl is the pregnancy hormone (HcG??? it contains progesterone but also the other hormones -- it's the "pregnancy hormone cocktail") and my doctor told me that the shots are supposed to be for infertility but they had some success using them during the first trimester for women who were miscarrying for unexplained reasons. I had that protocol for my first four successful pregnancies and then when I got unexpectedly pregnant at 42 they said my hormones were so high they couldn't justify the pregnyl but since I was so worried they let me do progesterone vaginal suppositories for the first trimester since there is some evidence that may help prevent miscarriage (studies have been inconclusive but many women swear by it). That baby was healthy and full-term as well, so I now have 5 kids when I thought I would never have any.

Folic acid is important in early pregnancy but it is probably not related to your losses. Women should be sure to cut back after the first trimester and do research though. High folic acid supplementation is linked to 30% higher rate of asthma in babies when taken late in pregnancy, for instance, and higher risks of cancer and many other complications for both mother and child. On the other hand, eating foods high in folates is always beneficial (folic acid is the synthesized version of folates and it is metabolized in the liver instead of the stomach). You may want to research foods high in folates and naturally supplement with those instead. Here's lots more info from an article I wrote about it a while ago (studies and additional info is linked in blue). examiner.com/article/folic-...

Wishing you the best. ((((((hugs)))))

~Alicia

sarahlou1801 profile image
sarahlou1801

thankyou all so much for your help and advice. in response I was on 75 mg aspirin and 40 clexane once a day no other treatment clexane started after heartbeat was detected at 6 weeks. baby stopped growing but continued to have a heartbeat untill 8 weeks + 5 days :( but never grew any bigger than the 6 week mark. will keep you all updated gonna get some folic acid and already take my 75 mg aspirin. will make an app to see my gp to discuss preparing myself for pregnancy and other treatments I may need this time...

GraceEllie2012 profile image
GraceEllie2012

I had three losses, and the 80mg aspirin and starting Lovenox upon my first positive pregnancy test helped me to have a successful pregnancy. My hematologist checked my Factor X levels monthly and the further along I got into the pregnancy, the more we had to up my dose of the Lovenox to be at the right therapeutic level. I think Folic Acid is important, especially if you also have MTHFR mutation, but I also think starting the Lovenox/Enoxaparin/Clexane as early as possible in the pregnancy is important as well. And, as someone else mentioned, there may be other things going on as well, such as low progesterone that might need to be remedied. Lastly, I want to wish you all the best of luck if you do decide to try again. It's a very difficult and heartbreaking process to go through, for sure.

kateb81 profile image
kateb81

Hi Sarahlou,

I am sorry to hear about your miscarriages. My first pregnancy was exactly the same as yours. I went for a 9wk viability scan to be told I wasn't as far as I thought as i was only showing a 6 wk baby but there was a heartbeat. Sadly the next day I started bleeding and ultimately miscarried. I have had 7 miscarriages in total myself and all of them were while I was on clexane and asprin. 6 of the 7 miscarriages happened for me 9 weeks and before and the last one I had was at 16 weeks (baby died at 14 weeks). I have been blessed with 2 babies (pregnancies 4 and 9 and both were low birth weight and early due to APS ) but after my last miscarriage I spoke with my GP and said if I was going to go through it again I needed to see a specialist in Pregnancy & APS. I took advice from here and managed to get a referal to see Dr Raj Rai in London. He put me on steroids as well as the clexane and asprin to stop APS attacking the placenta / baby. Thank goodness for me it worked and our second daughter made it.

If I were you, I would push for a referal but if your GP wont do that get him/her to write to / phone a specialists for proper advice and guidance. I think if I had been on steroids for earlier pregnancies I would not have had so many miscarriages (but that is my opinion only!). We have to fight... If I hadn't have pushed I don't think I would have my girls and would have given up a long time ago xx

Good luck with everything and if you ever want to talk feel free to msg me.

Kate xx

sarahlou1801 profile image
sarahlou1801

thankyou so much for your advice kate im def gonna make an app and me and my partner discuss with my gp the options before I ttc and hopefully I will get a referral

phoenix77 profile image
phoenix77

I take my hat off to all of you who have kept trying after multiple miscarriages. I have had 3. The first aged 18 was at 13 weeks then one in my early 20s was very very early then finally 10 years ago tomorrow my beautiful baby girl was born, she died just before the 20week gestation and after being induced she was born on the day I would have had my 20 week scan. We called her Bethany and I think of her every day but we've never been brave enough to try again. I'm 37 now and also have PCOS so I don't know if we will.

I wish you all the best care, the best support and the best of luck.

sarahlou1801 profile image
sarahlou1801

So sorry for your losses...it is hard after so many but we want to give it one more try and do everything in our power to be healthy and have the right medication this time round. After lots of thinking and discussions as a couple. If it fails again we are giving up. Just dont want to not try for the last time as im 36 and feel my times running out and i will regret it and live with the what if's. If anyone wants to message me if we are going through similar or have gone through similar situations please feel free to.

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