Aps newbie

Hi everybody I'm New here I was diagnosed with aps in 2010/2011, I have had 17 misscarriges and lost my daughter in 2005 she died the day after as i had pre-eclampsia and at the time did not know I had aps as well.

I was hoping to make some friends with people who have the same condition as me or someone who has been through similar, I am also currently not on anythingfor aps as not much is known about the condition should I be on anything for it any help or information would be helpful and greatly appreciated, i also have a problem with losing a lot off my hair is this in any way conected to aps as well many thanks.

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  • Hi and welcome to our forum.

    I am sorry to hear about your losses and I am sure that other of our members will reply to you soon.

    Where in the UK are you and who is managing your APS/Hughes Syndrome?

    Dave

  • I live in Bristol and my doctor knows off my condition but I'm under my local hospital but only when I get pregnant again

  • Hi Tots

    I live between Bath & Wells, hence my username.

    I was diagnosed in the RUH in Bath and then saw Prof Hughes, privately, over several years in London. I am now under the care of Prof McHugh at the Royal national Hospital for Rheumatic Diseases (The Mineral Water Hospital or 'The Min' as it is know locally) in Bath. They have a good, specialist knowledge of APS/Hughes Syndrome.

    Do you have any other symptoms: migraines, tingling, dizziness, brain fog, memory or speech issues, etc.?

    Dave

  • I do suffer with migraines for time to time and my right eye goes foggy but I have had it checked by my optician and they said everything is fine but I've been getting it for years,I also tend to forget quite a bit but I have just put that down to my medication that I'm on for other health problems.

  • Regarding your foggy eye issue: Have you ever had a visual field test? Before my diagnosis and treatment I had many migraines. I never had what you call foggy vision, but the visual field test revealed that I had a lot of damage in the visual cortex of my brain --Damage caused by clots, and damage which cannot be seen by an optician as though the eye is fine, the processing unit in the brain has an issue.

  • Hi Tots

    Im really sorry to hear about your losses. I think you will find a lot of support and useful info on this site.

    Im just going through the diagnosis process and should be getting results later this week. So I dont know much about APS. But the strong impression I get is that appropriate medical treatment (and in particular anticoagulants) can make an enormous difference. Im sure others will give much more info. But I would think it would be worth seeing an APS specialist as a matter of urgency. And hopefuly the right treatment will bring some relief.

    best wishes

  • Hello & welcome, Im sure you will meet many likewise health friends on here.

    Im so sorry for all of your losses - words can not express how you must feel.

    To help you more, who and where were you diagnosed? Are you being looked after for your aps?

  • Bristol in the uk but I'm not under anyone as such until I get pregnant again and then I am under a specialist at my local hospital.

  • Im quite near - just outside Honiton. I think you need to see an APS specialist now, not just for pregnancy but to be looked after in general, we have thick, sticky blood, which as you already have been diagnosed, is something that needs proper help. In some cases its just pregnancy but I really think worth you persuing now, even if its just peace of mind & help with your next pregnancy.

    There is a pinned list of specialists, top corner - get your GP to refer you.

    Keep in touch. X

  • I agree with Holly.

    Ask for a referral to Prof McHugh at the RNHRD in Bath.

    Dave

  • Thank you for that I will ask my gp about it when I next see him and yes I will keep in touch 😊 x

  • Go for it Totts.

    You might find that on anticoagulation the migraines and eye fog resolve.

    Dave

  • Hi Totts

    I am really sorry to hear of your losses, I can't imagine how difficult it's been for you.

    I have had two children now both through IVF. My issue was I never got pregnant but now they think that was because I was losing very early. With my first (at 35) i wasn't diagnosed, so it was put down to unexplained infertility. I was however put on aspirin to increase blood flow which helped me get pregnant.

    My son was very very small and I had several complications throughout the pregnancy. When he was born at 39 weeks they said the placenta was old and full of clots, my waters broke the week earlier and I didn't realise it, so it was lucky he was ok.

    It wasn't until I was trying again at 42 they picked up the APS (amongst other autoimmune conditions) and I was treated for APS pre IVF treatment otherwise again I wouldn't have got pregnant.

    I found a dr privately who specialised in APS and pregnancy (Munther Khamashta at the London Lupus Clinic), he put me aspirin and hydroxycholoriquine straight away and wrote the care plan for BARTS. I then started all the IVF hormones to support the pregnancy should i get pregnant. I was also given clexane (injections) from the day of transfer. He also took me on in the pregnancy clinic at Guys and St Thomas' as a NHS patient even though I wasn't pregnant, so if the treatment plan didn't work he could make changes.

    I got pregnant on the second round, with a long cycle and prednisone (steroid) support. I ended up on steroids quite a few times during the pregancy because I bleed heavily quite a few times (with clots) also had several chest infections and pneumonia which resulted in me being induced at 37 weeks, although I was already in labour when i went in. But luckily all went fine because I (and my baby) was being watched very very closely by several specialists and my local maternity docs/midwives and I had my daughter in 2015.

    I find it very strange you haven't already been referred to fertility specialists already as it's meant to be standard practice after 3 miscarriages. If you can, ask you dr for a referral. I'd seek out the best specialist and asked to be referred there, as it's unlikely your local hospital will have the expertise. My Dr was very reluctant at first but I was persistent and once I was officially diagnosed by a specialist she was great.

    I just wanted to let you know it is possible, there are lots of us with APS who have had successful pregnancies, you just need the right care plan and assistance before and throughout you pregnancy. Good luck huni xxx

  • I can't imagine the heartbreak you and ur family & friends have been through.

    Now it's time to get ur life back. Take control. Go out and get what u need.

    Don't be fobbed off. U need help now not just when ur pregnant- even if it's just info and advice.

    Take charge. Now that starts today. Right now!

    Research into the specialist mentioned above just google the name.

    Make an appointment to see ur gp. Give them the info and tell the dr that u want the first appointment with him/her.

    Then before u go for ur appointment do your consultation prep. There is lots to do. You need to be proactive and help push yourself to get what u need.

    Once u have been referred let us know and we will help u prep. Message me too if u like.

    Gone are the days when u just sit in front of a specialist- u must take charge and do ur homework!

    Wishing you the best of luck. Now please make an appointment with ur GP. 💋

  • Hi Totts,

    My heart goes out to you. I'm so sorry for your losses my darling.

    You have found the best support network in the world. This is where I find my strength when I feel like giving up! The advice is second to none - so PLEASE make an appointment with your GP and insist on being referred now - not just when you're pregnant! I'm afraid WendyWoo is right, you have to fight to get anywhere but remember that we are all standing with you! I know it's hard and you might feel alone but now you have found this forum - you're not 😘

    Charlie xx

  • Thank you Charlie for your kind words and I actually have an appointment to see my gp mid June so will speak to him about it all then xx

  • Well done chick! That's great to hear - it's helped me to write a list of what I need to ask because I'd forget my head if it wasn't screwed on...if you're not really sure of what you actually need to ask, I'm sure that the wonderful guys on here will help with that! I'm still in the long process of being diagnosed but I really couldn't have coped without this forum - they're amazing 😊

    Charlie xx

  • I'm so sorry that you've had such a hard time

    You've had lots of good advice on this sight I just want to wish you good luck I have seronegative APS I never got pregnant but adopted two amazing kids from Guatemala

    I hear Prof khamasta is excellent

  • Hello and a big welcome to you, you among many people who have had similar experiences to yourself. This is the start for you of the help you need. Your GP needs to refer you to one of the specialists which is listed under 'Pinned Posts' It is so important that the specialist has the right medical knowledge which is up to date, as this will only only help you but also your GP to manage your condition.

    With the symptoms you are having, I am surprised you are not on Aspirin, I am on this, 75 mg on a full stomach twice a day, but of course I did check with my GP and specialist first. Any future pregnancy needs to be managed by the right specialist, who will also of course look at your vitamin D, B12 Iron, and Thyroid also to make sure you are in the best place possible to try again.

    I am sure others in your area will tell you who medically speaking, has helped them.

    MaryF

  • Hi, just noticed your post on other site, I am not a member of that site so answering here. Great you want to lose weight, no harm in trying. Wheat intolerance can go hand in hand with aps, worth avoiding to see if you feel better?

    You mention you are having health issues and looking to have your gall bladder out, please see your GP and get referred to an aps specialist before any surgery, as having aps can give you further complications with clotting.

    Youve been through so much, work on getting medical assistance with your aps, ease up on being so hard on yourself and give yourself time.

  • Thank you holly that's really nice of you to say so but my surgeon that is doing my gallbladder operation already knows about my aps which is why he wants me to lose as much as I possibly can.

  • Totally understand, out of curiosity why are you having your gall bladder out? You still need someone to look after your blood!

    I had my gall bladder out, whilst I was in recovery I had clexane injections to stop my blood clotting, mainly because of my aps but also while imobile more prone to clot.

    Your eye going foggy and migraines could relate to your aps. I really think you would benefit from having some blood thinning treatment.

    I see you have an appoitment with your GP, as my colleague Dave said 'go for it', make a list of all your symptoms and get referred to an aps specialist.

  • I have gallstones and they play up nearly every day which is why I have to have my gallbladder out , I have printed off a list of specialists in Bristol who I can see so I am going to ask my gp for a referral to see one that deals with blood and my monthly's are incredibly painful due to being heavy and lots of clots 😢

  • Hi, that's very painful, on top of everything else you cope with. My periods were just the same, this was all before diagnoses of aps for me so led to surgery, now the doctors know so much more about APS and how it relates to all the body!

    Not eating wheat helped my flare ups of my gall-bladder, (And helped with feeling bloated and I lost weight) since removal I have never felt better and can now take small amounts of wheat occasionally.

    So glad you are going to get to a specialist - really good move..

  • Hi Totts, I'm very sorry for all your losses, it's too much heartbreak.

    I’m just over 7 wks pregnant after IVF (after a history of early losses). I'm also new here (this is my first post). I tested positive for Antiphospholipid antibodies last year (135), negative for all the other tests that go with it, and negative for lupus, I don’t have joint pain etc. I had a chicken-wire pattern on my skin, and began to notice difficulty with cognitive function over a few years (now improved). I was re-tested earlier this year, but I’m still waiting on the result from the h@ematologist. I’m on predisnolone, innohep, 75mg aspirin, and hormone support. I’ve also been having intralipids.

    I wish you the very best of luck on your journey, and I hope that this is the beginning of a new and very positive story for you.

  • Thank you and congratulations on your pregnancy I hope everything goes well 🤞🏻

  • Thanks Totts, and fingers-crossed that all goes well for you.

  • Welcome Eibhlin, sounds like you have had a long sad road - It sounds like you have a good team looking after you.

    Congrats on your pregnancy.

    Wishing you well, hoping you can put your health issues to one side and enjoy your pregnancy xx

  • Thanks Holly, I really appreciate that.

  • Hi Totts,

    Really hope you get this all sorted soon.

    If your hair is falling out, I would definitely be asking for a thyroid blood test. Thyroid problems have a very big impact on pregnancy, so worth getting it looked at in addition to your APS.

    Wishing you the very best of luck!

    Xx

  • Hi Oliversmum yes I do lose quite a bit off my hair and it's very thin and has always been greasy and have tried a number of different shampoo, I have also had my thyroid checked several times and the doctor insists that every thing is fine xx

  • Hi Totts,

    I'm so sorry to hear about your losses. I too have just signed up here due to a recent APS diagnosis and 3 Mc's.

    I'm shocked you haven't been tested for APS before. As mentioned further up, 3 mc's is considered 'multiple' and that's when you usually would get told to seek support from a fertility specialist.

    If you have access to some funds, I recommend you go to a top specialist when you're ready to try again. The NHS aren't as thorough with their testing as specialists.

    After much research I chose to see the best I could find, Mr Shehata at the miscarriage clinic in Surrey. You can actually be referred to him on NHS at st Mary's I believe but I don't imagine he can be as thorough under NHS. I have high sticky blood in 2 different tests and also have high natural killer cells. (My immune system in womb sees babies DNA as foreign so attacks it) The nhs don't test for this yet.

    I'm on 75mg low dose aspirin and my 'brain fog' has improved so much!! I'm already running big projects again at work so that is deffo something to talk to doc about.

    I have a program of steroids for NK cells, along with asprin, heperin injections daily when I fall pregnant and infusions every 2 weeks throughout pregnancy.

    You could have every chance of a successful pregnancy with the right treatment.

    miscarriageclinic.co.uk/new...

    I hope this helps you to ask the right questions and wish you so much luck.

    Big hugs xxx

  • Sorry I just realised you were diagnosed in 2010/2011.

    You haven't had any treatment since then whilst trying for a pregnancy?

    Xxx

  • I haven't really fell pregnant since and because off everything I have been through with the amount of mc's I have had me and my partner don't really have much interaction (this is on my part not his ) I just fear the worst every time I do fall pregnant but yes I'm too take a small dose off aspirin as well as folic acid and clexaine injections all the way through the pregnancy, also I'm too have check ups from 6 weeks on but as for when I'm not pregnant nothing xx

  • I understand Totts, it's very hard to keep facing it and I've no idea how you have done it so many times.

    According to studies, blood disorders like APS are accountable for about 10% of multiple miscarriage, Hormonal/Thyroid/Polysistic Ovaries 20% and Natural Killer cells (over active immune system) 50%. There are other less common reasons too.

    It's possible you may have more than one issue affecting your fertility? Finding out may give you some control and confidence back

    When you are ready, perhaps consider seeing a specialist that tests for all of these things. As I said, the NHS don't test for the biggest contributor

    Xxx

  • Thank you but unfortunately I can only go down the route off the NHS as I don't have any money to see a private specialist xxx

  • Sorry to hear about all your miscarriages. I've had four myself. I think a lot of us are on Coumadin and Plaquenil for APS. Take care of yourself!

  • Hi,

    NanaPam,

    I am sorry to hear of your four miscarriages!

    I know you have been on our site for a long time but not written anything for the last 4 years and that you also live in the US. I hope you manage your HS/APS with the help of a Specialist and i also hope you are on a proper anticoagulation to avoid damage the your body.

    Best wishes from Kerstin in Stockholm

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