Antiphospholipid Syndrome

[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.

[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]

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.

[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!!!