Hello all, I am delighted to find this site and wondering if someone might be able to help. I have been prescribed asprin, progesterone, fragmin and steroids from the moment I found out I was pregnant as the consultant suspects I have APS. I am currently 10 weeks pregnant, I've already had 3 scans and for all seen a heartbeat and all is looking good. My next (12 weeks) scan isn't till 2 weeks and I am desperate to know that all is ok. I am keen to know what monitoring people received during a similar treatment as I've been taking all this medication for about 4 weeks now with no monitoring whatsoever. I've noticed my vision being a bit blurry and twice had sight chest pains. The doctor suggests I wait to next week when I have some blood tests which I will probably do. I've suffered multiple losses. I do have 1 daughter but had severe early pre-eclampsia/eclampsia during this pregnancy so I can;t help but be anxious this time round. I'm really keen to know other experiences of this treatment and like I said, what monitoring they received. THANK YOU, sorry about the long post!!!
APS during pregnancy: treatment and m... - Hughes Syndrome A...
APS during pregnancy: treatment and monitoring
Hi and welcome, you have landed in the right place, you appear to have very good care, thank goodness you are being looked after. Which hospital are you under? Lots of ladies are in a similar position to you on this forum or have been there and got the t shirt! MaryF
I have been diagnosed with aps. At 5 weeks, doctor prescribed daily injections of lovanox. I had been taking daily aspirin, but that stopped once lovanox started. So far, lots of fatigue, headaches, and some bruising are symptoms. I'm about 11 weeks along. I went in to my hematologist office to get bloodwork at 8 weeks. All was good. I go to get bloodwork again at 16 weeks. So far, ultrasounds every 2 weeks, which is quite frequent compared to some. Hopefully, this will reduce in second trimester.
Hello, I am coming up to about the same stage as you (11 weeks) although I'm still waiting to have bloods, I'm booked to have them next week so fingers crossed! I hear that the ultrasounds are to be every 2 weeks as well. I too have headaches and fatigue. Anyway, nice to hear from you and hoping all continues to go well for you.
It is a very worrying time and I found I never relaxed during my pregnancy. I was on aspirin, fragmin and high dose folic acid. Plus I then needed a cervical stitch at 19 weeks (I had never got that far before so we didn't know I had a short cervix as well) I had 7 weeks scan due to bleeding and the. 12 weeks and 20 weeks before going to every two weeks after 24 weeks. If I showed any signs of growth slowing they would have done more tests and brought baby early if needed. Luckily no growth issues and I was induced at 38 weeks and had a beautiful perfect baby girl. It seems like you are getting excellent treatment and lots of scans but it is perfectly normal to worry. I found that the scan made me feel better but only for a small amount of time before I worried again.
Wishing you lots of luck xxxxx
Hello, really nice to hear your story, sounded like you had a really tough time but great to hear you had a perfect baby girl, I am so pleased to hear this. Also, you understand the worrying!!! it's ups and downs, the emotional stress and all the symptoms!! thank you once again for sharing, gives me hope.
Hi, I was started on clexane injections and aspirin from 4 weeks. Early scan at 10 weeks due to bleeding, then a scan at 12, 16, 20 (and a few others past 20 weeks) also a specialist performed a scan to check for holes in babies heart. Baby's heart was monitored every other day towards the end for reduced movements. I was induced at 39 weeks and currently sat looking at a sleeping, cheeky, happy 8 month old princess. It is such a worrying time but sounds like you're being well looked after. 
x
Hi, I am also at the start of what looks like my first successful pregnancy after 3 miscarriages. This time I conceived using IVF because it turns out my egg reserve is also low and may have contributed to my previous mc. Anyway, I've been on high dose folic acid and prenatal vitamins since more than a year ago and then started the aspirin and heparin from positive pregnancy test. Am also on eltroxin for thyroid. I was on progesterone but this stopped around week 9/10.
So, I had scans at 6, 8 and 13w5d. The 3rd scan was supposed to be 12 weeks but it can get pushed out a little. I'm now 14w4d, furthest I've ever got and I have twins so I'll be treated as high risk with scans every 4 weeks and I believe consultant appointments in between. I have yet to meet my consultant so it will become more clear for me next week.
The tiredness in first trimester is ridiculous but for me it has eased a little. They do say that eyesight can change during pregnancy, even for healthy women so hopefullu that's nothing for you to worry about. Hope you will be able to enjoy your pregnancy after your next scan. I was so on edge until my 3rd scan but I've decided to try and enjoy what's left of it now.
Hello and nice to hear from you and hear how things are going for you. I am looking forward to getting some more monitoring, think it's just taking time and making me feel anxious! that's good advice about enjoying what is left. I wish you well and would be nice to hear you get on. All the best.
I too had to have injections, cleaxane, from beginning of my pregnancy along with aspirin and progestin. I was monitored every two weeks with scans and then I was told I had to have a c-section to deliver. Which was fine. I too had several miscarriages before I was told I had APS so I was very anxious but did love being pregnant in the end! My daughter is now two years old but I am now on life long warfarin because of the APS and I had clots in my lungs last March - was very scary. But I'm on the mend and now working but taking it easy and I have an amazing daughter! Hang in there!
Hi I was living in Hastings East Sussex England and 21years ago I was diagnosed with APS after I had suffered three miscarriages two of which were still born at 6 mths gestation.And had two small babies , one was full term weighing 5lb 1 1/2ozs and one very premature baby who was 8 weeks early,weighing 3lb 10ozs and my daughter who was 6 weeks early and breech, who weighed 5lb 2ozs , I was rushed back into hospital after my second still birth with a blood clot in my calf, whilst I was there a wonderful doctor was on call whom happened to be a diabetic doctor and was interested in my problem. He took time to research what had happened and diagnosed me with APS,not much was known about it back then, but he advised me that if and when I got pregnant again that he would help me through it,. He said I would have to injected my self with heparin daily and have blood tests every week, to see how my blood was reacting so that I have to adjust the dosage of heparin I needed. Also I had many scans to see how baby was growing etc. Also I was told I needed a cervical cerclage (a stitch) to prevent my cervix opening during the pregnancy too early causing miscarriage. Even though my son was born six weeks early but was a good birth weight 5lbs 6ozs. I then had to gave warfarin for 9 weeks after the birth. But I only now take low dose aspirin every day and have my blood checked every two years to see what the APS levels are. So out of 7 pregnancies I had 4 babies that have thrived and gone and grown up into lovely young adults. As I said not much was known back then compared to what is known today. Hope this can give you some hope and guidence .
Just make sure when they do the ultrasound, make sure they take Still shots and see the baby's growth every time. I've lost two kids one at 6 mos and one at 7 mos. and each time indelivered the baby was behind the normal growth. Pay attentions to all headaches and if babybis not moving as often.
Hey, congrats. I'm on week 34, got a very active baby rolling around. Currently taking 150mg aspirin, and 20,000 ul daltaparin (fragmin). Since discovery of baby I'm not supposed to have, I see my haematologist every six weeks, and a high risk consultant every week. All scans are currently every four weeks and hopefully will be induced by my 39th week. Baby was conceived whilst taking apixaban which is a big no no. But all is good and everything is possible.
For those who were diagnosed with APS, did they confirm you after two tests or did they take the first positive APS test and put you on a protocol? I tested high for APS after my recent late miscarriage but can’t have the 2nd test for 12 weeks - concerned if I get pregnant in meantime and they don’t have confirmation on APS - will they start me on aspirin, injections, etc. rather err on safe side.
I had already had a diagnosis of aps before my pregnancies.
How long is it until ur 2nd test?? Is it too long to hold off and wait just to be on the safe side?? I know how it is to want to conceive as soon as possible but if possible could u try and wait?? U may feel better once u know for sure and are on treatment. I started fragmin at 6 wks pregnant.
So I don’t know about what they would do on just one test regarding treatment and whether they can do a test once u are pregnant???
Good luck and just push for ur care as nobody else will and u have to look after u and any pregnancy x
Hi Ashlo, I never had any official tests as such, my consultant diagnosed me and recommended the treatment. I was advised to start the medication straight away. What has your doctor suggested should you get pregnant in the meantime? they may well err on the safe side but I completely understand that you want to be best prepared and with this medication, it's not that you can just stop it, you have to keep going through the majority of the pregnancy so for this reason, I think it is really worth waiting and knowing the APS test result first. Just interested in knowing what tests you had? (you mention having two tests) blood tests? I think for me APS was highly suspected and the course of treatment started. Thinking back I guess I will never really know what the outcome would have been had I not taken the medication. However, the outcome has been great! I have a perfectly healthy 2 year old boy. I do not take any medication now or long-term issues. Hope everything goes well for you.
Hi, me again, I just came across this link which I thought might be useful to you, particularly the section on 'if you have not been diagnosed yet': tommys.org/pregnancy-inform...
Hi, with my 1st pregnancy I was just on aspirin and had regular growth scans after about 28-30wks and induced at 38wks.
2nd pregnancy I was on aspirin and fragmin injections just because they thought 1st baby’s growth had tailed off so thought may help 2nd baby be bit bigger. (1st baby was 5lb 12 at 38 wks and 2nd was 6lb 1 at 38 wks)
I had regular obs rv and scans at 6,10,12 ,20 wks and the 2 weekly after about 28-30 wks and they were never gonna let me go to 40 wks and definitely not past. If babies growth starts to tail off they often will get them out as they can do better outside at the later stages than staying inside.
So with careful regular monitoring by rheumatologist or haematologist and obs experiences in aps or lupus and right meds u have a much higher chance of a successful pregnancy.
Good luck any questions there’s a few of us on here who have been thru similar.x
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