My APS experience - hopefully I'm not alone!

Hi, I would like to hear from anyone who may have had a similar experience to mine. (Apologies if this is repeat of what others may have written but I have found it quite therapeutic to write).

I am a 36 year old female who began suffering strange symptoms during my first pregnancy 2 years ago (an IVF pregnancy as we never had any luck falling pregnant). Symptoms included migraine auras, double vision, other vision problems as well as general confusion (which I just put down to ‘mummy brain’). For example, one day I went to get in the elevator and couldn’t remember for 5 mins or so what floor my office was on. Very bizarre not to mention embarrassing.

During my pregnancy I tested positive for anti-cardiolipin antibodies and further investigations then also confirmed a positive test for lupus anticoagulant. No one specifically diagnosed APS at the time although I was then put under the head Obst. at the hospital so maybe it was suspected (??). The Obst. decided I needed to be induced given the positive antibodies results. The day before I was to be induced I had a vertigo attack which I had never had before. Very scary at the time as I was heavily pregnant. I mentioned it to the Obst. but it was put down to migraine. The next day I was lucky to give birth to a healthy baby boy.

I was then put on daily injections of heparin for 2 weeks as a precaution given my positive antibodies test. Within 3 days of giving birth I was struggling to breath and following a chest x-ray was diagnosed with Pneumonia and given antibiotics via IV (I am still not sure whether this pneumonia was APS related or not - my current Haem. says she doesn’t think it is related).

Over the next few months I continued to suffer vertigo attacks. I found the Hughes foundation website on Google when searching for info on antibodies and couldn't believe the similarity of my symptoms with those of APS sufferers. I printed the pages off and took them to my GP asking for a referral to a Haematologist. I could tell my GP thought I was crazy. He put my symptoms down to breastfeeding hormones (although I had finished breastfeeding a few months beforehand). I was also told I shouldn’t self diagnose via the internet. On my visit to the Haem. I was again warned of the dangers of self diagnosing on the internet. I was informed I did not have APS seeing as I had never suffered a miscarriage. It apparently did not matter that I had never fallen pregnant despite trying for a number of years. Funnily enough this was the same Haem. the Obst. had been consulting during my pregnancy.

Fast forward three months and I was admitted to hospital with a thrombotic event (clotting in my feet). CT/MRI also showed I had suffered a stroke. There was also evidence of around half a dozen previous TIAs. I was then quickly diagnosed with APS and have now been told I will be on warfarin for life and Plaquenil for an extended period (Rheum. suggested to the Haem. I go on Plaquenil even though I don’t have SLE??) The stroke affected my eyesight and general wellbeing for about a month but I feel as if I have almost made a complete recovery (90%). Although it concerns me that my stroke could have most likely been prevented with the right investigation and diagnosis I am thankful that someone ordered the initial CT and feel very lucky the stoke/TIAs were discovered.

I am now seeing a different Haem. who regularly consults both a Rheum. and Neurologist in relation to my care. We are thinking of trying for a second baby. I have been advised it would be classified as a high risk pregnancy.

I would like to hear from anyone with general words of advice and/or who has gone into a pregnancy knowing of their APS, the medical advice you received and the outcomes (good and bad). Also, for those with children have you had them tested for APS?

For those of you who have had stroke/TIA out of interest what INR level has been suggested? Mine is in the range of 2 to 3 but I seem to think much clearer when it is up towards 3 if that makes sense.

Thank you

19 Replies

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  • Hi there and welcome on board, thank goodness you did consult the internet, for this condition it is the only option quite a number of people have, and indeed it has led many to the correct care and also support. There are some very stuffy and prickly medical attitudes out there, if you work out what you have, and even get it verified, the ones who have not kept up with modern medical reading get huffy.

    Thankfully I am pleased to hear that you have moved away from their poor care and attitudes. I have only recently had a diagnosis myself, however had multiple clots in my legs during first pregnancy, then went on to have two more, successfully to have two more. I am one of the few who has not had miscarriages, simply due to the fact that I lived close to St Thomas', my sister had already had DVT and PE's during pregnancy, and I did not trust the advice I was given. You can find my own personal blogs on here, (the updated on), plus lots of others tell a similar tale.

    Well done for getting to where you are in your care, some on here are still fighting despite endless dangerous and stressful events. Life will be easier for you with the right team.

    Some families and not all, have a close pattern of APS, mine is one of those, but many are not.

    Hope this helps. Lots of people on here will have stories familiar to yours, and will direct you to their life stories, including those around pregnancy.

    Mary F x

  • Thanks Mary. Can I ask more about your family pattern of APS or what you know of it? Have you blogged about it previously? I have just read on the website that family members can often have thyroid problems which is what my sister suffers from. Does that mean my Mum should get tested? I don't think she has any APS type symptoms except migraines.

  • Hi there, no harm in a test for your mum, and yes I do have blogs on here including the one labelled as my updated blog, if you click on my profile and see my blogs it should be there somewhere! back in history, if you can't find it do let me know xxx MF

  • Great thanks I will have a read!

  • Hi aps mom- i think different people are more comfortable at many ranges ! but the general thought of 3 and above seems to be the range for most of us ! some doc's want to keep us lower because of bleeding being more of risk at higher levels - but they have to understand some of us feel better,function better, less symtoms when we can maintain a higher inr level. it's always been a problem with me because in the 3 years i;ve had this lovely dis -order they have never been able to stablize me , i test every 3 days [ not rite now because of surgery and on enoxaparin injections - for next 5 weeks ] but it will resume once back on warfarin. and it was a battle to get them to let me stay in the higher range -[ my range being 2.5 to 3.5} i brought info from this site - peoples own personel accounts of the higher range and they finally gave in . my hemo brought in to do the bridgeing for the surgery wants me back down - do i have news for her !!!!. she wont be calling the shots once they revisit and re-test my protien S and C problem [ they are dangerously low !!- bye my rheumy is fine with my range and it's he who is treating my A.P.S.and my other 4 blood problems . take the fight to them , be ready with info , dont be afraid to tell them -- only you know how you feel , not them and their statis'tics. this seems to be a common problem whan you listen to a number of the notes on this site ---------------- not so purple gimp

  • Thanks for your reply jetjetjet. It was helpful in getting my doc to revise my inr range (now 2.5 to 3) only a small improvement on 2 to 3 but heading in the right direction I guess. My INR has been all over the place as well. I was having blood tests almost daily at one point when my reading went up over 7. That was really scary and had to have a vitamin k injection to bring it back down. It fell back to 1 almost immediately and then I was back on Heparin injections. Good to know they can reverse it if needed I guess. Have you looked at those self testing machines? I am wondering if they are any good.

  • Hi mum - glad it was a help:-) i have been as high as 6.7 -this usually ends me in the e.r. and the lovenox begins.havn't had this problem for awhile now. it' good when we can take others experiences, and us as a tool to get some positive results to and from our doc's. my guess is give it some time as with me it took about a week to settle in { as much as it was going to with my wacko body } let me know how it goes ---------not so gimpy today --- me

  • Hi hon

    Welcome and glad you found us and that you pushed for a diagnosis!! So sorry about your health problems, sadly your story is all too familiar and very similar to mine, I experienced years of infertility, did have many miscarriages and now suspect that other early miscarriages, but put them down to infertility! May have happened to you!? I had awful symptoms during pregnancy, Caesarian section deliveries with all three miracle children!,! Headaches etc following birth!!

    When expecting next child you need a good obstetric team, treatment protocol is aspirin and heparin during pregnancy, also is a good idea to take high dose frolic acid pre pregnancy!!

    Inr range 2-3 is the norm that docs prefer, but many Aps patients find 3 and above suits us better!! Professor Hughes opinion seems to be that stroke patients should be 3-4, I know some on here who are as high as 4-5!!

    Odd your pneumonia post pregnancy, I had an unprovoked dvt and pulmonary embolism, the lung clot was first thought to be pneumonia?!!?

    As far as grumpy medical profession, we are increasingly finding the only way to deal is push information at them!! If they take it on board and learn great if not move on, find another doctor, it's our health, our bodies we have to fight to be heard!!

    Hope you well today!

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

  • Hi Sheena, hope you are well today too and thanks for your message. It was good to know what to expect before I went for my Haem visit a few days ago. See my post below.

    Yes very interesting they first thought your lung clot was pneumonia. That makes me even more suspicious about my diagnosis. Did you have X-rays? and what did they show? I could hardly breathe at the time so I can hardly remember what the diagnosing doctor said he saw on my x-ray.

    Thanks

    APSmum

  • Oooops meant to say, you are definitely not alone, we here, love n hugs xxxxx :-) :-) :-)

  • As my mother suffered from Lupus and APs and stroke I asked haem last year after having a big operation whether an anticoagulant should be given and no definite answer, was told they would phone, no call, and within 3 weeks loss of vision in left eye like a blind coming down and went to Eye infirmary only to be told that it was a TIA they then contacted Haem and was told to take Clopidigrel and see them in two weeks time!!! no mention of MRI whereas the eye doctor said that they would get a mri scan done to get stroke sorted out but there was no mention, it was only Heptology who immediately sorted out and thankfully they did.

  • Hi Daisy, yes good to hear they sorted it. How is your vision in your left eye now?

  • Dear apsmum,

    Hi...:) first-lots of hugs to you!!! Then more hugs, why? Cause you deserve them:)

    Yes, I too had all those funny looks from doctors, dismissals, and went misdiagnosed throughout my first pregnancy. My doctor(s) thought I must have eaten a lot within one week since I gained (can't remember to the pound) 8 pounds and said that I had carratunnel syndrome (?) that was causing my arm to feel swollen/hurt-so they gave me a cast. Lol-it has taken me ten years to lol about it....it wasn't until I was 5 days postpartum, had 3 strokes, and seizures that a neurologist defined APS, tested, and confirmed it.

    Now to the good part!

    Yes, after all of that, high risk doc saying we shouldn't get pregnant again etc.... We got pregnant again.

    Now, in all honesty, we did want more children but had decided against having anymore.

    At the time, I looked at it like this:

    First, had a healthy husband so I didn't want to "jeopardize " his possiblity of future offspring if I somehow didn't make it in the years to come..seeing that I had already had strokes, diagnosed with APS, etc.- basically...did not want my husband to have a vasectomy..

    Second, couldn't use oral or at that time most contraceptives, since they messed with hormones.

    Third, I have very sensitive skin.....that means everywhere;) so the "calendar method" was a dear and close friend..

    Needless to say, we were pregnant again!!

    How did the pregnancy go??

    Well besides the fact that I was scared s%^=less everyday and I looking back wished I come have been more of a testimony of my faith, all went beautifully!!!:0)

    Like I said, we had a high risk ob-gyn, that had me take daily blood thinner shots and he chose to deliver our little blessing early (32wks I believe).

    Needless to say, during the csection I was also "fixed".:)

    I'm I absolutely blessed by having another baby and am I thankful, would do it all in a heartbeat again???yes,yes,yes,yes I would!!!!

    Lots of info, maybe too much but I hope it helps!!

    xxx to all

    Mommaleda

  • Yes lots of info but all great info Mommaleda! Thank you. See my post below I am going to give it a go but will def. find a good high risk ob/gyn. If I don't give it a go I think I will always wonder 'what if'. Funny that they first diagnosed carpal tunnel. They thought I had that as I was getting numbness and tingling in one arm. Looking back it was probably the start of TIAs/stroke!

  • Ps

    Had my first tested for APS, thus far, negative.

    Do I keep a lookout for aps symptoms in both kiddos, yes; just like I lookout for strep throat :)

    xxx to all

  • Thanks guys for all of your helpful replies. It's great to know I'm not alone (or crazy)!

    I had another visit with my Haem. since my last post. She revised my target INR from 2.5 to 3 after my comments. Nice to know I am being listened to. She also halved my plaquenil dose (I read its not the best for your eyes so had been pushing to try and reduce it).

    Pregnancy wise before commencing IVF she advised I would need to swap to heparin/clexane (as well as continue my aspirin). Plaquenil can also be taken when pregnant apparently. Anyone? I want to double check this.

    We agreed the next step would be for me to discuss IVF with the fertility specialists. The Haem. needs to understand what hormones would be administered this time around as they could cause me to start clotting again (we have two embryos in the freezer so maybe less hormones are required as no collection is required?).

    I am also hoping the Fertility specialists may be able to give me a steer on a good high risk ob/gyn - hopefully one who has had experience with APS pregnancies.

  • Hi there, very good news re the medical communication, well done, good news is great news etc. Mary F x

  • I was diagnosed with APS 3 years ago after I had a stroke. I had had two healthy pregnancy's with no problems, but had started getting headaches after my first child was born. The stroke was a surprise because I had always been healthy, just had some headaches all the time. After my stroke I started having migraines and headaches almost daily. I also had 2 TIA's that year. For the last 2 years I have been trying to treat my migraines but other than that if my INR is above a 3 I do good. Over the last 5 weeks I have been on a medicine that has helped my migraines, yay, but I would still have some tingling on my right side, face and hand, I thought that was only due to my headaches. Guess I was wrong. Last Thursday I had a very bad vertigo spell, that continued with numbness down my whole right side and dizziness for several days. My neuro did tell me I probably had a stroke, had drift and weakness on right side along with dizziness and nausea, still going on a week later. If my INR is below a 3, which it was, because of APLS I am at risk for a stroke.

    I am tired of feeling tired and having headaches all the time and now pain/ numbness on right side with dizziness when I try todo to much. I have 3 kids, I have to do thinks and participate in their like. I am only 34 now.

  • Im sorry to hear this but you may like to know that my headache consultant who is based in San Francisco and considered one of the best in the world told me that my Migraines brought on after my stroke will last from 3-5 years and will then go away. On that basis hopefully you are going to get to the end of them soon!! They are apparently called post traumatic migraines caused by the traumatic brain injury.

    Hopefully things will improve soon. Make sure you speak with your Doctor about this and keep your INR at the right level. Hang in there and best of luck x

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