Antiphospholipid Syndrome & Lupus? anyone have any advice or information? would be greatly appreciated.

[kirstyleigh]

I thought that the cause of my pregnancy loss at 21 weeks gestation, was because of lupus, but I received a letter from my consultant stating that 'Antiphospholipid Syndrome' was the cause, However Lupus contributed. I was just wondering if anyone else suffers with both diseases? If so has anyone experienced pregnancy problems. My son, who sadly passed away, was my first born, and I guess being 21 years old, and being diagnosed sooner rather than later has gone in my favour, but I'm so worried about how my next pregnancy is going to plan out. Im finding it really hard to come to terms with the diagnosis, because I don't have that much knowledge about Hughes Syndrome. Im worrying about my health long term, and generally feel weak. I always feel tired and drained, so its hard for me to determine whether I'm having a Lupus flare up or not. Any information regarding this would be greatly appreciated. Thanks. xo

[MaryF Administrator]

Hello and welcome, I am really sorry to hear of your recent loss, and I will also say that sometimes sadly women have this happen multiple times before diagnosis. Things should be a lot safer for you now, with diagnosis at a young age. Our charity website carries a lot of information, it is a good idea to familiarize yourself with all the information on there, it also contains a list of Hughes Syndrome/APS specialists across the UK. Many on here, including myself have both APS and Lupus, you have landed on a forum with great support. I am sure over time lots of other women on here will share their experiences to date with you and give you some support. I will also load up a film for you: hughes-syndrome.org/ hughes-syndrome.org/self-he... youtube.com/watch?v=V3J8BLk...(Not working as expected?)

Lots of people go on the have successful pregnancies on the correct medication. Please feel free to learn whatever you need from us on here and to also feel you can ask questions. All the best to you. MaryF

[Hidden]

Hi im sorry to hear about your son. I lost my first son when I was 19 years old and was 22 weeks pregnant. I was diagnosed with APS after that. I have since gone on to have 2 more sons. My 15 year old was born at 29 weeks after me taking just asprin but my 11 year old was full term after me taking asprin and fragmin. Its scary after losing a child but hopefully you will get the help U need. The administrators on this forum are amazing I have had so much help and advice from them. Any questions asked are answered. I hope things go well for U in the future. Xx

[kirstyleigh in reply to Hidden]

Lewchar1, Im sorry to hear about your loss, I can truly relate to the hurt and pain. But I'm happy to hear you went on to have 2 successful pregnancies. I have been told that when I next get pregnant to take 150mg aspirin daily, and heparin injections daily throughout the whole pregnancy. But its so worrying because I lost my son quite far into my last pregnancy, Im scared to death of the same thing happening. I think I will understand more once I have spoken to my consultant, But I'm finding it really hard to accept that I'm going to be living with Lupus and Hughes for the rest of my life. Im scared of developing severe depression, and I'm trying my hardest to stay positive, I have my good days and bad, but the loss of my son is still very fresh as he passed 2nd March this year. Thank you for your reply. All the best xox

[sydney_mrfox]

Hi Kirsty, I am saddened to hear about your loss. I was diagnosed with Lupus and APS in similar circumstances to you last year at aged 29. Lupus symptoms (chronic joint pain in toes and hands) started at week 17 of pregnancy. 19 week scan was fine and baby was right on growth target but APS indicators were flagging red, I was put on clexane (40mg) and aspirin (100mg). Sadly, at week 24 I developed severe pre-eclampsia and baby was only developed to 22 weeks. I lasted 5 days before they no option but to induce me and my son was stilborn. That happened in July 2013. This was my second pregnancy, first miscarriage at 15 weeks.

I am now pregnant for the third time and am almost 17 weeks. I have been monitored from the start and taking aspirin (150mg) and clexane (60mg). All is looking well so far with no lupus pain either. But I am obviously anxious coming up to the 17 week milestone and then the 24 week milestone. I can keep you posted on how this goes. I've heard countless stories of women in the same position as us who have successfully had a baby so there is hope.

[kirstyleigh in reply to sydney_mrfox]

Syndey_mrfox, Thank you for your reply, Im sorry to hear of your loss, Heaven has gained such precious angels. I truly hope this pregnancy goes well for you, and I'm glad to hear that its going well so far. If you wouldn't mind keeping me posted that would be great. Throughout my pregnancy I felt fine, suffered bad morning sickness upto 13 weeks but apart from that I had no other problems. I had my 12 week scan and the person scanning me was unsure whether there was a second sack or an amniotic band, (by this point I had already had a bleed at 6.5 weeks). The doctors didn't seem worried about this and it got shrugged off. When it came to my 20 week scan and we found out we were having a boy we were over the moon, however, I had very little amniotic fluid. Deepest pool being 1.5. The next day my waters broke. I got taken to hospital were they examined me and confirmed that the leaking fluid was indeed my waters. I was told it doesn't look good but there has been cases similar were the pregnancy has gone far enough for the baby to be viable outside of the womb. I got told to rest and try stay positive. I had an appointment at a different hospital 2 days later for a more detailed scan to check my son was ok, He was completely fine however, he had a clubbed foot due to the lack of fluid. There was some areas of his body that couldn't be measured or checked because I had very little fluid, so it was harder for the doctors to see. I got offered the option to terminate and myself and my partner declined, we wanted to give our baby a fighting chance. The next day my waters broke again. I phoned out of hours doctors and they said to monitor the leaking fluid, drink plenty of water, rest and take further action in the morning (it was 11.30pm when my waters broke). I woke up the next morning and had an excruciating pain down my left side, to the point were I couldn't move without being in absolute agony. I later got blue lighted to hospital, Had my bloods taken and found out I had a very serious infection (unknown) by this point I had no choice but to let the doctors intervene because they said my life was at risk also (I was at risk of getting septicaemia). I was put on inter venal antibiotics immediately to fight the infection, and had another drip inserted to induce my labour. 9 hours later my little man was born, breathing on his own for 1 hour and 4 minutes. He weighed 1lbs 1oz. He was beautiful. I wish you all the best with your pregnancy. I really do. Take care. All the best. xox

[rach1081985]

aww so sorry for your loss...... i hav had 1 full term successful pregnancy at 17 i was diagnosed with aps at 22 and told id never hav anymore children.....but at 25 i fell pregnant again and baby was delivered at 33 wks by emergency section...all is gd nw....... im sure u will b successful now u hav diagnosis..

[Hopingforababy]

Hi Kirsty, I felt I had to reply to your post, however, I don't have Lupus. I have Antiphospholipid syndrome with the Lupus antibody- so sticky blood that effects my pregnancies. Reading the description of your pregnancy was so similar to my first pregnancy. Took ages to get pregnant as this antibody can cause multiple early miscarriage so early before knowing your pregnant. Anyway I found out I was finally pregnant expecting identical twins, we were so excited but knew the risks of shared placenta (even without knowing about my sticky blood on top too). I had a big bleed at 9 weeks but babies still ok, I started leaking fluid on and off from 16 weeks. But still All went ok until 30 weeks when my blood pressure went up and one twin died out of nowhere it seemed, then, due to shared placenta the other twin soon followed. It was devastating. I had to give birth to both babies. My consultant sent placenta away and did blood tests which revealed sticky blood and a blood clot in the placenta. It took me months to grieve. I then had two more early miscarriages back to back. I saw a specialist who told me heparin injections from early on as these help pregnancy get off to good start then aspirin that protects the placenta later on. I did this and now I'm 36 weeks pregnant. It's been totally normal so far. Due to be induced in 2 weeks all being well. Baby is normal growth etc. so what I'm saying is persevere - I'm sure the medical regime of blood thinners will work for you. I also know how painful losing a baby is, make sure you seek support. I found this site so helpful for looking at success stories. It spurred me on to seek out as much info as I could about antiphospholipid syndrome. I also have a friend who has lupus and she's had two children no problem so I know you will be fine with the right care.

All the best xxx

[sydney_mrfox]

An update to my journey...

Just had my 18 week scan - baby's growth is right on target, excellent blood flow to/from baby, placenta high, long cervix, low blood pressure and no SLE symptoms! The next 6 weeks are critical, if I can get through them with no growth issues or blood pressure issues then I'm likely to go all the way to 36-38 weeks. Next specialist appt re antiphospholipid/lupus is in two weeks and next OB scan is in four weeks.

Starting to get excited now

[kirstyleigh in reply to sydney_mrfox]

Sydney_mrfox - I am so happy to read this, I am glad all is looking good for you. I really do hope for the best for you and your pregnancy. Please keep me updated if you wouldn't mind. It helps to hear good news. I am also pregnant again, only early (If I've worked it out right) around 6 weeks. I have my first scan in 2 weeks, if all is well, I will go onto have a scan every 4 weeks, and swabs taken every 3 weeks to rule out infection immediately. My consultant wants to be one step ahead. It helps to no I'm going to be well monitored. But the worry I feel on a daily bases is sometimes unbearable. I find myself going to the toilet every hour to check I'm not bleeding. Its very stressful, and so hard to remain calm. But I can do it. I really hope all goes well for you. All the best and take good care. Love & Light xo