Newbie!

Hi, I am new to this community and just wanted to say hello. I recently found out I had APS (Hughes syndrome) as a result of tests done following 3 m/c, and currently awaiting to undergo IVF. I am currently on asprin and if the IVF is a sucess I will be on asprin and Heprin. - is that quite normal? apparantly by cardiolipin levels were very high.

I must admit this diagnosis came completley out of the blue as I didnt even know this condition existed - but in a way I do feel relieved that I know what was going wrong. I was feeling down in the dumps a bit but after reading some of the posts and the poor woman who have so many losses before they were diagnosed I am feeling very grateful.

I have lots of questions but I might just start by reading some of the community posts. - so hi for now.

14 Replies

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  • Hello and a big welcome to you. I have just answered your post on the other thread so won't repeat myself! Lovely to have you though and look forward to seeing you back on here when you feel ready. X

  • Welcome to the community and glad to hear you've had an early diagnosis.

  • Hi to our forum :) I'm sorry to hear you have APS but glad you have found us.

    I bet you have lots of questions! I know we all did in the beginning, all being well you are under good care :) sounds like you are seeing as you've been found in the early stages......

    Most of us are on warfarin......but because you trying for a little one this is the safe option.

    It sounds like it's all in hand & you are being watched over well :) good luck with it all & we are here to support you whenever you need it xx

  • Hi hon,

    Welcome and glad you found us! thank goodness your docs on the ball and have diagnosed you.

    Treatment during a pregnancy is aspirin and heparin. So they doing the right things. Glad you have a good team round you,

    Wish you all the best hon, keep us updated on how you are doing.

    We here for you if you need support or info.

    Take care gentle hugs love Sheena xxxx :-) :-) :-)

  • Thank you for all your kind messages and for making me feel welcome. Does anyone know if achy legs is a symptom? Sometimes my legs really ache like I've run a marathon, but other times they feel fine.

    I will def keep you updated, looking like I may start my ivf cycle very soon. It's been a very long and painful journey but I am hoping now that things will be different.

    I hope everyone on here is all ok and ur meds are working for u

    X

  • Hi hon

    Yes achy, tired legs, mine swell too.

    I know the feeling on the long and painful journey, i'm sure lots on here do, Hopefully your on the right path, patients with Aps do considerably better in pregnancy with treatment, good luck with the IVF hon.

    Take care gentle hugs love Sheena xxxx :-) :-) :-)

  • Hello and Welcome,

    You will be able to found out a lot about this illness on this site.

    You will also be able to make friends with people who understand what you are going through.

    I hope your IVF goes well xx

  • Hi apsgirl and welcome to the forum.

    Yes, I get achy, tight legs, which can affect my cycling. This has developed just over this last year.

    Where in the world are you? I'm in the Bath area of the UK, where we are setting up a local patient's group.

    Good luck with trying for a baby.

    Best wishes.

    Dave

  • Welcome, fellow newbie! I just found this site about a week ago, and already am humbled and grateful for the responses I've received. Don't be afraid to ask anything!! This group knows there stuff.

  • Sadly my dx came after 2 m/c, I went on to have one more. That was 13 yrs ago. My ACA was also very high. I didn't know what APS was, but over time have. I was on baby aspirin through my 3rd pg. Heparin was a backup. I am on coumadin now because of a stroke I had after his birth. I have always been very achy in my joints. I was just dx with RA as well.

    Good Luck

  • Thanks for everyone's comments. I live in Manchester uk

  • hi im new to this as well, i only just got told after having 14 failed pregs that i might have hughes. im so happy that they might be able to help at last. GOOD LUCK.

    do you get blister type things with hughes?????

  • Hi Louise - Ive seen your Blog so welcomed you on that. When you say blister type things what do you mean? Are you talking about a rash with blisters? If that is the case it could be a number of different things but it would depend on what other symptoms you may also have.

    I dont know where you live but my suggestion would be to try and get a referral to St Thomas's in London (Louise Coote Lupus Unit) where they can assess all these different things. x

    guysandstthomas.nhs.uk/our-...

  • Hi there and welcome, glad you have landed on here, various questions including details will be answered for you, and this will make things clearer and more manageable, hopefully to have us as backup and support. I had very late diagnosis, but even so, better late than never. Mary F x

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