I am wondering if anyone else has had the APS affect them during pregnancy but then their levels gradually improve afterwards? My levels seem to be getting better the longer I go on since my last pregnancy finished in 2011. My most recent bloods were only 9 for Beta, 7 for IgG but still positive for lupus anticoagulant. Platelets are also now 195 (the best they have been since 2008 with 1st pregnancy). My platelets have always been on the low side (around 120) since diagnosed in 2008 so I was surprised to see such an improvement in Sept tests. They did drop to 62 at the end of my 2nd pregnancy. I have currently had some symptoms such as the pins and needles in fingers, joint pain in knees and fatigue on and off but overall much better since starting low dose aspirin end of last year.
I would love to try for a 3rd pregnancy and child but wonder if I am just pushing my luck? I have 2 beautiful children (7yr and 4yrs) who despite being born premmie (27wks and 33wks) and growth restricted (605 grams and 1050grams) are healthy and developing well. I was on twice daily 60mg Clexane injections and baby aspirin during 2nd pregnancy and once a day 40mg Clexane and aspirin for 1st pregnancy.
Now that my body seems to be recovering I feel like I should just be grateful for what I have and move on with life.......especially knowing what another pregnancy would involve. However now that I have received these recent results I have started dreaming again and wondering whether my body could react differently next time since the levels are so low at the moment.
I am just voicing my thoughts that I feel I can't really discuss with any friends or family-no one really understands and everyone would think I was crazy to even want to go through it all again.
Thanks for listening,
Elle
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ema_35
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Hi there, some of us really have a display of the condition more so in pregnancy, I am a bit like that, I do still have it outside of that time, but whenever I was pregnant there was a problem with clotting. I think you should have an appointment with your most trusted specialist and your partner to help you decide. However what I will say, is always keep an eye on the condition as situations can change, and this certainly includes myself. I also had a huge flare after each pregnancy, but we are all different. MaryF
I never saw my placentas as I was put under General A both times however my Ob said the placenta was full of clots and much smaller then a 'normal' one.
My first pregnancy seemed to progress normally until 25 weeks when I had the beginnings of pre-eclampsia and Ob realised baby was growth restricted. One of the main arteries to baby/or placenta had an absent flow (i'm assuming due to clots but i don't really know). I was admitted to hospital for monitoring and steroids etc and made it to 27 + 1 weeks before they had to deliver as she was in distress and my blood pressure was playing up.
2nd pregnancy all went smoothly (although baby always measured slightly smaller) until 31 weeks when I had a small bleed. After stopping the aspirin the bleed stopped and I made it to 33 + 4 weeks. This is when the syndrome did 'flare' and affected my platelets. Ob and specialist decided it best to deliver bubs given he was a decent gestation. Luckily platelets started to improve after a couple of days of delivery.
It is a lot to consider however I know of 2 women here in Brisbane (Australia) with APS who have had full term pregnancies. One had treatment with Clexane and one had no treatment so I think as Mary said it really depends on an individual's response to the syndrome.
Personally I would have always taken the risk as I so desperately wanted to have children. However, I was only diagnosed at 10 weeks pregnant so with my 1st pregnancy I didn't understand what it all meant and had no choice but to try these medications the Ob and Specialist were recommending.
I understand how difficult it must be for you knowing all of these scenarios but still not knowing how your body will react. I think having a good Ob and Specialist are key to a successful outcome. Where are you located?
I had clots my legs which I caught early, I then had the correct medication and continued with my pregnancy, after that I had two more children and was started on 'Fragmin' very early on. If you have the right medical consultant expert both in obstetrics and Hughes Syndrome/APS there is no reason why you can't have a safer time with this, but make sure you have the correct support and guidance. MaryF
Thanks Mary-I really appreciate your thoughts on this. Each time I have seen my specialist in the last year (every 6 months), I have felt like I have my common sense hat on so I haven't even dared to ask her. I know my husband would be supportive if I really wanted to try again but I think we both know the huge risk. I was interested to read a recent post on here regarding the Clexane injections prior to confirmed pregnancy due to improved outcomes. As you have said, something I need to discuss with my specialist.
Actually my memory is pretty bad and I should have mentioned that I'm pretty sure I had a TIA just before 10 weeks with first pregnancy. My GP (the next day) said it was just a bad migraine but I am sure it was a TIA as I have had plenty of migraines before but this was the first that I lost the ability to speak! My husband was worried but I just went to bed confused and hoping to feel better in morning. Speech was a bit better in morning but my ability to speak clearly in sentences and think coherently was affected for months! Like I said earlier, wish I knew then what I know now........
I'm currently on lovenox injections twice a day, aspirin and hydroxychloriquine. I believe this is the protocol for pregnancy as well for improved outcomes
What is the hydroxychloriquine and what does it target? I'm guessing it would be known by another name here in Australia? I heard of someone recently who was also on prednisone but being weaned off it after 1st trimester. Wishing you best of luck April for a successful pregnancy soon! Elle
Hydoxychloroquine was prescribed to me even before they diagnosed me with APS. Before I had my stroke I had just the antibodies and they told me hydroxychloriquine can help with the rheumatological side of the disease. There haven't been any side effects that I've noticed but they do warn about a rare side effect of irreversible retina damage which requires annual exams. They say it's safe during pregnancy too. I am just praying I can get that far and make it through 🙏 Thanks for the well wishes Here is a link rheumatology.org/I-Am-A/Pat...
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