Antiphospholipid Syndrome

[yellowblue]

Hello,
wanting to hear from anyone who has this condition and is pregnant...i was only diagnosed with this after my daughter was stillborn at 38wks. After much thought and the great want for another baby I am 6wks pregnant and have been on 100mg of asprin since diagnosis and will start heparin injections in the 8th week. I am obviously very anxious as I am classified as a high risk patient as there is the possibility of miscarriage and stillbirth again, the hospital have told me my real concerns will be from 20 wks onwards as that is when things can go wrong. This pregnancy will be watched much more closely with ultrasounds every month to ensure the baby is growing correctly but i wont be truly at ease until I have a crying baby in my arms. Any advice would be appreciated.

[Jules_P]

Hi there -

I am very, very sorry to hear of your loss. I cannot even imagine how difficult that must be for you.

Regarding your question, I have lupus antibodies and also Prothrombin Gene Mutation (inherited clotting disorder) so I have been on low dose asprin since ttc, and on Heparin (Clexane specifically) since about 6 weeks. I am a patient at the Royal Women's Hospital in Melbourne and go in for weekly scans until my 12th week. Right now I am 9 weeks pregnant and everything seems to be on track with bubs.

I'm not sure what kind of advice you are looking for, but I can tell you the injections are not all that bad. Wish I did not have to take them, but after 5 losses, I'm not willing to go without. This is probably my only shot at carrying to term, so I have to take the risks along with it.

Good luck!

[yellowblue]

Dear Jules,

Thanks for your reply. Im so sorry to hear of your losses and my best wishes to you this time around.
I was concerned about the injections but like you will do ANYTHING to have a healthy baby at the end of it, the hospital have not discussed with me yet the side effects of the injections what are they? Do you worry everyday and if so how do you deal with that im really trying not to worry as its out of my control to a certain point and feel the real worry will start around 20wks as we could not bear go through it again even at that early stage. I have told the doctors I don't want to get to 38wks again so they will induce me at 35/36 wks. Have you discussed any of this yet?

[Ca Plane Pour Moi]

Hi there.

I'm so sorry to hear of your losses, both of you, and that you have this dreadful disease. I have a medical background and am being investigated for this, so I hope you don't mind me sharing what I have learnt about it so far, which may well be old hat to you but I hope it's helpful.

In short, the illness makes your blood a bit thicker than normal; it's more "sticky" and "gloopy" - this means that the products in the blood can't get to the placenta as easily as they can in a "normal" person. Heparin, Warfarin and Aspirin are all blood-thinning drugs (I think Aspirin can cross the placenta though, which is why pregnant women shouldn't take it) so your blood is less sticky and the blood products can pass through the placenta to your baby, meaning you'll have a happy healthy baby at the end.

That's the theory behind it, at any rate.

Side-effects - the problem with this is that most side-effects refer to people who have normal blood, not sticky blood. Lightheadedness, for example, is caused by the blood being thinned so there's less oxygen going around. For you girls, it means fewer episodes of light-headedness; the sticky blood was making you lightheaded, now it's "normal" consistency you'll feel better. I've not heard of any really dreadful side-effects, save for some bruising if you have a bad injection.

Best of luck to the both of you.

[Jules_P]

Dear Jules,

Thanks for your reply. Im so sorry to hear of your losses and my best wishes to you this time around.
I was concerned about the injections but like you will do ANYTHING to have a healthy baby at the end of it, the hospital have not discussed with me yet the side effects of the injections what are they? Do you worry everyday and if so how do you deal with that im really trying not to worry as its out of my control to a certain point and feel the real worry will start around 20wks as we could not bear go through it again even at that early stage. I have told the doctors I don't want to get to 38wks again so they will induce me at 35/36 wks. Have you discussed any of this yet?

Hi there - Well, I know of at least one person personally who was on heparin and she just delivered a healthy bub a few weeks ago. She stopped it around 35 weeks I think and had a c-section b/c bubs was breach. She had no complications at all.

It's my understanding that long term heparin can contribute to osteoporosis, and there are probably some other rare side effects that are in the literature you get with the meds. I have read somewhere that heparin babies can sometimes be a little bit smaller at birth. My doctor at Royal Women's has not expressed any worries about any of this and he is a highly regarded expert in this field. It's also my understanding that the heparin does not cross the placenta so no harm to baby.

I get some bruising around injection sites now and then but that's just part of it - it's not that you had a bad injection or did it wrong. I ice the injection shot a bit before I give it and it helps a lot. The medication can sting a bit when it goes in - the ice helps and I also inject slowly and that helps too. I have had NO other side effects other than some nervousness about giving myself the shots!

I think you should see if you can start the heparin before 6 weeks, by the way. I really would have freaked if they told me I had to wait that long.

I think anyone who has suffered a loss worries more in subsequent pregnancies. I just try to take it one day at a time. Every day I am poking my breasts to see if they are sore, wondering if I have as much queasiness as the day prior, etc. Many women go through this. A lot of the time I just try not to think about the fact that I am pregnant to be honest. I am less stressed this time than I was last time b/c I was not on the heparin - just the aspirin. And, I have to remind myself that what will be will be. I feel that unless the baby has a genetic problem, this heparin will help me deliver to term. Oh - and I have belonged to a wonderful online support group for miscarriage, pregnancy after miscarriage, etc and it has been a lifesaver for me. I also have seen a counselor a few times through the recurrent miscarriage clinic and have found that very helpful.

And I also wanted to comment on Rosehip's post about aspirin - low dose aspirin is very commonly used with women who have a history of loss, clotting disorders, etc. And yes, the heparin and aspirin help prevent the tiny blood vessels to the placenta from getting clotted so then the baby does not get cut off.

Yellowblue please feel free to contact me via my profile (I don't think I can do private messages but you can contact me there somehow) if you would like to email off forum. It's a scary time but you can do it. I just keep thinking that not trying for another baby is more painful to me than another loss to be honest even though I know if we lose this one I will be wrecked.

[yellowblue]

Hi Jules,

I got on the net last nte to do some research and did read about the possibility of osteoporosis (unfortunately my mum has it so it might be likely) but I don't care I would take it anyway of course, the net is a great source of info but a little scary I had read asprin should not be taken in pregnancy but under our circumstances it is Ok but it makes you wonder my GP told me that asprin was the "new drug" for preventing miscarriages. I am a little concerned now re my ultrasounds, have not been advised to do them monthly, did have one at 5half weeks and not due for another till 12wks which is the standard one at that time my Dr at the hospital has been on leave and not due to return till the 15th december and the only doctors I have seen are for my asprin and injections I have another appointment on the 11th december with her and will request another u/s I will also start my injections on that day which will be my 8th week and pray its not too late. Also they have told me there is no way of checking if there is a clot in the placenta (how my daughter died) only the growth of the baby will indicate if there is a problem and that is a real worry to me (im trying to be relaxed!!) Thanks so much for your info on injections will also do that.

I am trying not to worry and will try to have faith that my doctors are doing the right thing at the right time....but have a feeling I am going to need to be a little more demanding. I am also feeling sick im just over 6wks now and my sickness gets a little worse everyday and also 24hrs a day which they say is a good thing and worrying everyday is not going to do me any good so have made a promise to myself to just relax Its great being able to discuss this with somone who knows what im going through (asprin, injections etc) so happy you replied to my original message.

We really did agonise about the decision to try again i must tell you i do have a daughter who is 4 and that pregnancy and birth was uncomplicated and she is a real joy and has really helped us through our devasting loss, without her even knowing it, but as with this disease it can come and go apparently so they are unsure if I had it then as they only test for it if you have lost a baby. Life is full of risks and if you dont take them you will never know, your a brave women to keep on trying the way you have and I really really hope the outcome for you this time around is a joyous one.

I have never been on a forum before and finding it a little tricky navigating my way around it and was unable to get your email address so not sure now what to do.

Look forward to hearing from you soon, have a lovely happy weekend.

[Aphrael]

Hi there,

I was diagnosed with APS in 2004 after 2 m/c by an Ob. He then said when I fall pg (have PCOS so had to take other meds to fall pg) to use aspirin asap till 36 weeks.

I fell pg 2 months after being DX and used aspirin till 36 weeks, I had a baby girl by em caesar 5 days later with no probs (had to take the heparin after the caesar though, gee's they hurt!). I then fell pg with DD2 in May 06 and took aspirin again till 36 weeks (she was born at 42 weeks via em caesar again).

I had no side effects of the aspirin and had big babies (3.6 and 4kg) and am pg with #3 and taking Cartia (aspirin with a coating as the other aspirin I was using was giving me stomach pains) and will take it for another 7 weeks (am 29 weeks now).

At the start of this pg I saw a haematologist and he tested me further and discovered I have no APS atm but was advised it can come and go so to be careful anyway, hence I'm on aspirin again.

That's my story in a nutshell

I'm so sorry for the loss of your baby girl.

Beck

[yellowblue]

hi beck,

Congratulations on your babies it is very reassuring to know of women who have this condition and have gone on to have healthy babies. They also told me how it can come and go, I have a little girl and that pregnancy and birth was fine its heartbreaking to know that if we had of known earlier they could of possibly saved my her but there was no reason throughout the pregnancy to think that there was anything wrong, all scans were great , I was measuring every month as I should of been even though the placenta stopped growing at 30/31wks and there was hardly any fluid left and her heart beat was strong the day before we discovered she had gone. Best of luck on your next birth I hope everything goes very well for you and your family.

[Jules_P]

Hi Jules,

I got on the net last nte to do some research and did read about the possibility of osteoporosis (unfortunately my mum has it so it might be likely) but I don't care I would take it anyway of course, the net is a great source of info but a little scary I had read asprin should not be taken in pregnancy but under our circumstances it is Ok but it makes you wonder my GP told me that asprin was the "new drug" for preventing miscarriages. I am a little concerned now re my ultrasounds, have not been advised to do them monthly, did have one at 5half weeks and not due for another till 12wks which is the standard one at that time my Dr at the hospital has been on leave and not due to return till the 15th december and the only doctors I have seen are for my asprin and injections I have another appointment on the 11th december with her and will request another u/s I will also start my injections on that day which will be my 8th week and pray its not too late. Also they have told me there is no way of checking if there is a clot in the placenta (how my daughter died) only the growth of the baby will indicate if there is a problem and that is a real worry to me (im trying to be relaxed!!) Thanks so much for your info on injections will also do that.

I am trying not to worry and will try to have faith that my doctors are doing the right thing at the right time....but have a feeling I am going to need to be a little more demanding. I am also feeling sick im just over 6wks now and my sickness gets a little worse everyday and also 24hrs a day which they say is a good thing and worrying everyday is not going to do me any good so have made a promise to myself to just relax Its great being able to discuss this with somone who knows what im going through (asprin, injections etc) so happy you replied to my original message.

We really did agonise about the decision to try again i must tell you i do have a daughter who is 4 and that pregnancy and birth was uncomplicated and she is a real joy and has really helped us through our devasting loss, without her even knowing it, but as with this disease it can come and go apparently so they are unsure if I had it then as they only test for it if you have lost a baby. Life is full of risks and if you dont take them you will never know, your a brave women to keep on trying the way you have and I really really hope the outcome for you this time around is a joyous one.

I have never been on a forum before and finding it a little tricky navigating my way around it and was unable to get your email address so not sure now what to do.

Look forward to hearing from you soon, have a lovely happy weekend.

Hi Yellowblue -

I don't think aspirin is recommended for most pregnancies, but in cases where there is recurrent miscarriage or blood clotting it seems to be commonly prescribed. As for my weekly scans, those are for my peace of mind. I don't have to have them weekly but the recurrent miscarriage clinic offers them for those of us who would otherwise be sick with worry. In fact, today I woke up in a panic b/c my symptoms have really tapered off at 9 weeks and thought for sure my baby had died. Well, I called the hospy and they told me I could come in, and they did a scan and all is perfect! Heart beating, bubs wiggling, and growth on target. I think maybe I am going to luck out with nausea ending early...

I actually "met" another women in a different forum (not baby related) who had multiple miscarriages b/c of the same thing you have, and then she used heparin for her next 2 pregnancies and both were successful!!! So that should hopefully reassure you a bit more.

Trust me, I know how hard it is to find the courage to try again after loss. I would imagine after what you went through it would be even harder. If you are really freaked out, please be assertive with your doc's office if you need a scan before 12 weeks. Tell them you are in a panic (if you are - if you are not, then good for you!!!) and would really like to get in for a scan for your mental health b/c of your previous history. I've found that by telling healthcare professionals that I have lost 5 babies and that is why I am being a freak that they understand my need for extra TLC.

You know it's funny - I personally wouldn't consider what we have a "disease" per say - in my mind it's a blood clotting disorder and a gene mutation (in my case for the 2nd one).

Anyhow, best of luck to you!! Let us know how you go.

[Jules_P]

Hi there,

I was diagnosed with APS in 2004 after 2 m/c by an Ob. He then said when I fall pg (have PCOS so had to take other meds to fall pg) to use aspirin asap till 36 weeks.

I fell pg 2 months after being DX and used aspirin till 36 weeks, I had a baby girl by em caesar 5 days later with no probs (had to take the heparin after the caesar though, gee's they hurt!). I then fell pg with DD2 in May 06 and took aspirin again till 36 weeks (she was born at 42 weeks via em caesar again).

I had no side effects of the aspirin and had big babies (3.6 and 4kg) and am pg with #3 and taking Cartia (aspirin with a coating as the other aspirin I was using was giving me stomach pains) and will take it for another 7 weeks (am 29 weeks now).

At the start of this pg I saw a haematologist and he tested me further and discovered I have no APS atm but was advised it can come and go so to be careful anyway, hence I'm on aspirin again.

That's my story in a nutshell

I'm so sorry for the loss of your baby girl.

Beck

Wow Beck - what a wonderful success story! While I am sad to hear of your losses, I am very happy to hear that you now have a little family with another on the way!!

The heparin isn't so bad if you make sure to ice the injection spot throroughly beforehand. Give it a try if you need to do it again. Best of luck to you with this pregnancy!!

[yellowblue]

Hi Jules, hows everything going, all good I hope. I am 8wks and a couple of days today and have been to the hospital to start my injections today and it went well. I was nervous and thought they might let me practice on an orange or something but I put it straight into my belly and the nurse has assured me it does get easier, it did sting for a little while but by the time I got in the car it had gone but will take your advice and ice the area when im at home. Look forward to hearing from you, regards Alana.

[Aphrael]

yellowblue, you share the same name as my DD2 her name is Alannah!!!!!

Thanks for the info Jules, I generally have the shot in hospital so I'll see if they can give me some ice beforehand (although I dont think they do heparin after natural birth, this baby will be born the way nature intended).

All the best Alana I'll be keeping an eye out for you on the boards (or you can pm if you want to let me know).

Cheers,

Beck

[Jules_P]

Hi Jules, hows everything going, all good I hope. I am 8wks and a couple of days today and have been to the hospital to start my injections today and it went well. I was nervous and thought they might let me practice on an orange or something but I put it straight into my belly and the nurse has assured me it does get easier, it did sting for a little while but by the time I got in the car it had gone but will take your advice and ice the area when im at home. Look forward to hearing from you, regards Alana.

You did it!! Yay!

I got to practice with an insulin needle (nothing in the syringe) at the hospital (that needle is actually thinner I think) and I freaked and almost could not do it, but it wasn't so bad.

I've had a few trials with the heparin (I'm actually on Clexane/Lovenox) from being nervous, etc. and had a few weeks with lots of bruising. I found I was not icing myself long enough - so now I make sure I am good and numb before I do it. I may have mentioned this (just woke up after not a great night sleep so am delirious) but I find that injecting very slowly helps with the stinging. DON'T RUB the injection site afterwards whatever you do. I still get occassional bruising but they are really small and right around the injection site.

I am 11 weeks today and my weekly scans have gone great - bubs is growing like crazy and moving around like a maniac every time!! On Thursday bubs mooned me - bum down and towards the screen, both legs up in the air. It was hilarious. To see this after losing so many babies is truly a miracle to me, and I really think it's the heparin and aspirin making it possible. None of my babies have ever made it this far. Fingers crossed my NT scan comes out well on the 22nd.

All the best to you Alana - let me know if I can help!!!

[Jules_P]

yellowblue, you share the same name as my DD2 her name is Alannah!!!!!

Thanks for the info Jules, I generally have the shot in hospital so I'll see if they can give me some ice beforehand (although I dont think they do heparin after natural birth, this baby will be born the way nature intended).

All the best Alana I'll be keeping an eye out for you on the boards (or you can pm if you want to let me know).

Cheers,

Beck

Beck - for how long will you have to get the shots? The ice really helps - even my midwife at the clinic agreed it was a good idea, though the girl who I first practiced with (with the insulin needle) did not suggest it. So see how you go.

My new OB told me that a vaginal birth is absolutely possible for me!! I thought for sure I'd have to do a c-section. But she said she'll take me off the Clexane and aspirin towards the end and I should be fine. Of course there is always a chance I'll need a c-section for other reasons, but unless there is a massive problem, I'm so glad vaginal is a possibility!

Hope all is going well for you!!!

[farmgirl77]

Hi,
Just saw this post and thought I'd say hi. I was diagnosed with APLS in Nov this year after 4 failed IVF transfers, the APLS was preventing our little embies from having any chance of implanting and growing. Since being diagnosed I have been on 100mg of asprin, and from the day of transfer, 2 x heparin injections per day. Well, the treatment must have done something as we got our first BFP just a week ago, and now have our fingers crossed to see a little heartbeat on our US in a weeks time (xmas eve!). The specialist suggested that I will continue this treatment until we are at 16wks pg - if all goes well.

YB, Bec and Jules - I'm really sorry for your losses, and hope that the diagnosis will give you a succesful pathway to a beautiful baby. I know that my specialist said that women with APLS who have recurrent MC but then go onto heparin and asprin have a 80% chance of having a live baby with their next pg once they have started treatment! And congrats to you all on your pg and this great start to them, wishing you all the best for h&h 9 months!

I'm just wondering how often you are all having scans? My specialist for the APLS said that she needed to see regular scans from the OB to judge if everything is going well with the PG and if my meds needed changing, but I'm not sure what 'regular' means. Have you had to have other additional tests because of the APLS?

Thanks
FG

[Jules_P]

Hi,
Just saw this post and thought I'd say hi. I was diagnosed with APLS in Nov this year after 4 failed IVF transfers, the APLS was preventing our little embies from having any chance of implanting and growing. Since being diagnosed I have been on 100mg of asprin, and from the day of transfer, 2 x heparin injections per day. Well, the treatment must have done something as we got our first BFP just a week ago, and now have our fingers crossed to see a little heartbeat on our US in a weeks time (xmas eve!). The specialist suggested that I will continue this treatment until we are at 16wks pg - if all goes well.

YB, Bec and Jules - I'm really sorry for your losses, and hope that the diagnosis will give you a succesful pathway to a beautiful baby. I know that my specialist said that women with APLS who have recurrent MC but then go onto heparin and asprin have a 80% chance of having a live baby with their next pg once they have started treatment! And congrats to you all on your pg and this great start to them, wishing you all the best for h&h 9 months!

I'm just wondering how often you are all having scans? My specialist for the APLS said that she needed to see regular scans from the OB to judge if everything is going well with the PG and if my meds needed changing, but I'm not sure what 'regular' means. Have you had to have other additional tests because of the APLS?

Thanks
FG

Hi FG - congrats on your BFP! I hope this is your sticky one!!

I am having weekly scans at the recurrent miscarriage clinic, but that is my choice - I think it's offered more for emotional support b/c of the stress experienced after recurrent loss.

I have had like 10 different blood tests b/c of my losses - all sorts of different clotting disorders and immune things. One of the conditions I have is a genetic one - not APLS - so I am happy they caught it.

Best of luck to you!!! Let us know how you go.

[yellowblue]

hi julesp,

just wanted to catch up with you to see how you are doing, all really well i hope. Im doing ok still taking all my medications and a clexane injection eveyday unfortunately im unable to administer it myself and a very good friend does it for me, i started off OK but i just lost my nerve for whatever reason and found myself in the bathroom for over an hour trying to give the jab and by that time i was anxious and would start crying as i was so disappointed in myself for being unable to do it but luckily it gets done now. Im nearly 19wks have my scan next week and feeling good. Would love to hear from you.
Regards,

Yellowblue.

[Possums]

Hi, I am so glad that through a link from farmgirl (hello!) in the LTTTC section I found this thread. I have just been diagnosed with this after testing for recurrent miscarriage and must admit am freaking out a bit, even though I am glad they have identified the problem and it can be treated.
I am just worried about what it will mean/possible problems and also a bit sorry for myself just right now, that we not only have trouble conceiving (I have only one tube left which is 'dodgy'), but now have another issue to deal with. I know I will get my head around this, but right now I am still I suppose dealing with the losses of the past 12 months and am a bit shell shocked and processing this latest info.
Your stories are encouraging and just knowing you ladies are here is also encouraging and helpful