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Thread: Results are in...I have antiphospholipid syndrome

  1. #1

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    Default Results are in...I have antiphospholipid syndrome

    Hi ladies, just wanted to let you know the results are in from the recurrent miscarriage tests and this is what they came up with....antiphospholipid syndrome, treated with daily clexane injections in pregnancy and very close monitoring. Basically it's an autoimmune thing, here is a bit of an explanation (although I know there are other threads about this on this site)..:



    People with the antiphospholipid syndrome (APS) have a tendency to form abnormal blood clots. In pregnant women with APS, blood clots stop the placenta forming properly and prevent nourishment and oxygen getting to the baby.

    Basically the body gets confused and makes antibodies against itself...
    Phospholipids and proteins that are attached to them play a big role in blood clotting. In APS, the phospholipids makes antibodies against phospholipids and these antibodies contribute to blood clot formation.
    I knowthere are other things involved, and other symptoms, but that's my basic understanding, while i get my head around it

    Problems in pregnancy can be miscarriages, early and late loss, low weight babies, premature babies, high pressure...

    Farmgirl...I know this is what you have and might PM you sometimes if that's OK.

    I am tired as we just got home after driving a total of 6 hours today, down and back to see our FS, so I'll post more later.

    For now I am a bit emotional to be honest. Relieved there is a problem and explanation that can be treated....scared of what it will mean,the possible pregnancy complications etc; and also a bit sorry for myself. I suppose I feel like we have all this drama to GET pregnant, and then there will be this other issue to confront and cope with once we achieve another pregnancy. I know I will get my head around it in time. I just wonder why it has to be so hard/complicated for us.
    At least there is a way to manage it.
    Thanks so much again all of you, for your support.
    Emma
    xx
    Last edited by Possums; March 28th, 2009 at 07:59 AM.

  2. #2

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    I am glad for you that you have a reason for your sad losses. At least now you have some hope of a positive pregnancy with medical help. A big hug to you.

  3. #3
    Lovenhope Guest

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    with moving forward with your TTC journey. I will be thinking and for you.

  4. #4

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    I'm glad you have some answers hun XOXOXOXOXO

  5. #5

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    Hi Possums
    I'm so pleased you have some answers now hun. I too have the same problem. I had to take medication once I became pregnant and had lots of scans during my pregnancy. Feel free to PM me if you want to know anymore
    I wish you all the very best for your ttc journey

  6. #6

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    Hi Emma
    I've been following your story, and I just wanted to let you know that I'm thinking of you and your journey. At least you know now - and that it can be treated is wonderful news.
    Jen

  7. #7

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    Hey Em
    I am glad you have some answers. At least they can help you when you fall pregnant again. I think Rara may have been on the clexane too.... Take care and big
    Rach xx

  8. #8

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    Thanks so much everyone

  9. #9

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    Oh no Possums...not exactly good news. It's good to get a diagnosis but one like this will bring you so many worries the next time you get pregnant. I've always had the theory though, that if they know what's wrong they can treat it & therefore you have a much higher chance of a successful pregnancy than before such a diagnosis.

  10. #10

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    satya- your comment sums up how I feel really...glad there is something we know about which has treatment, which is better than not knowing...but taking a step back, really worried and a bit upset I have something like this at all...and knowing it will be hard to relax in pregnancy (hard for me anyway! lol)

  11. #11

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    Hey possums - what a journey you have been on already - i was asking questions here just the other day about this syndrome, and am thinking of having blood tests done - more for peace of mind before i go ahead and transfer my frozen emby. I have only had one IVF cycle, and had a beautiful 5day blasty transferred, but the result was negative.

    My thoughts are with you - wishing you strength to take the next step on your ttc story *hugs* x

  12. #12

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    Possums ,

    I remember our first OB appointment after our BFP and he outlined everything that could go wrong with the preg because of the APLS - and it scared me. But then I also remembered the good stories that I have read here and in other places and realised that it did not have to be what happened and that a healthy outcome was a very strong possibility. Yep there will be some hiccups along the way, but you will get your little baby and it will be ok. Glad that you found the link to the others on BB with APLS! I totally understand your feelings of 'why me' - yep it is good to know what is going wrong but boy it still sucks and makes you feel sad!

    Pls PM whenever you need to...also ask your Dr about heparin injections vs clexane - they both do the same thing but have slightly different side effects...some drs like one over the other. I've stayed on heparin because it is 1. reversable (if you are in an accident or alike and are bleeding they can give you another medication to reverse short term the blood thining effects of the drug) 2.the injections dont hurt as much (but you have two a day instead of one with clexane)...I know that there are advantages with clexane as well, so just make sure you talk about it with your dr and are comfortable with your choice. Also - get the script in early - before you need the drug...it can be hard to get and chemist need to do a special order, so allow 1 week...also get the biggest sharps container you can find...cause you will fill it...no good are the little IVF ones


    I wish that you did not have APLS but now that you have been diagnosed, I wish that it leads you to your little one.

    FG

  13. #13

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    FG- thanks...I knew you would understand the way I feel, and I am encouraged by you and your progress
    I have to see a haematologist next to do more tests and check out a clotting result which was a bit abnormal, given my other results. A lot of what the FS was flying over our heads by the end to be honest, but I know that's my next step.
    And thanks for the tip on the script...I will get it filled out, because while we are trying naturally, I want to be ready should another miracle BFP come our way.
    I was also wondering about the differences between heparin and clexane.

  14. #14

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    Possums,
    I started low dose asprin (100mg x 1 tab per day), on drs orders as soon as I had the diagnosis - so it might be worth asking if you need that as well as the heparin/clexane (you dont need a script for it - can just get it over the counter at any chemist). As far as I understand it I will keep going with the asprin for the entire pg.

    I started the heparin on the day of the transfer. Because I only tested positive to the antinuclear antibodies, and not the lupus antibodies as well, I will stop the heparin at about 20 weeks - if all is ok with my scan. I think that the girls who test positive to both sets of antibodies stay on the injects till at least 27wks as the risk are higher.

    Long term heparin use (not sure if it is the same for clexane) can contribute to osteoporosus (sp!) - so upping your calcium intake can be a good thing - my ob told me that as long as you are on pg vitamins with calcium and drinking milk/eating cheese (which I consume lots of both) you should not need to take extra suppliments - but again check with the specialist.

    On the positive side...these are the stats that the haematologist I went to gave me...if you have had 3 miscarriages, the chance of you carring to term on your 4th would be about 10%, if you take asprin alone, it increases to 30%, and with heparin and asprin increases to 80%. So there are still some people that will have trouble, but the way I looked at it - for once with this whole IVF journey the stat are finally in our favour!!!

    Good luck with your appointment and ask lots of questions.
    I'll be thinking of you and wishing you all the best. Hang in there...oh and dont buy a bikini for when you are preg - when you do get pg your tummy will look like a soccer ball - rounded and black and white with bruises and then the spots that you have not yet injected into!!! (I call my belly a speckled dinosour egg)
    FG

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    Possum, glad to hear that you have answers for your baby angels.
    Take care and rest up and am sure your FS will have a grat action plan when you are ready to go again

  16. #16

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    FG -thanks for all the advice...I have so many questions now I wish I had asked my FS, but we were sort of in shock a bit and trying to assimilate so much! I think I will have to call or maybe email her with my questions.
    I have also been wondering about the aspirin. I only tested positive to one set of antibodies.
    I am glad you can laugh about your tummy, but in reality I am sure the injections arent much fun. At least they are doing their job i guess.
    I am also not sure how much monitorin will be required in the pregnancy or how that will work here, where we dont have the option of private care after 12 weeks when we get referred to the hospital clinic.

  17. #17

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    p.s. thanks to the others for your kind words too

  18. #18

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    Possums: Just sending you a , glad you got some answers but sorry it brings so many worries.

    Sara

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