Question about treatment

I was blessed 3 weeks ago with a healthy baby girl after years of heartache due to undiagnosed Hughes. I was on aspirin and heparin in pregnancy. I've seen a consultant haemotologist who says all my tests were negative apart from the DRVVT - the more sensitive one for lupus antibody. He says that as I've never had a thrombosis or symptoms of the disease outside of pregnancy I don't need treatment in every day life. Has anyone else had this advice?

He says that I'm not really at risk of thrombosis anymore than anyone else. Just enough antibody to be a problem in pregnancy. I stop the heparin in 3 weeks (6 weeks post pregnancy) and I'm nervous about clots etc. I guess I need to follow the experts advice. The consultant obstetrician specialising in APS also said similar.

Thanks.

14 Replies

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  • Congratulations on your baby girl :-) I was told the same by some doctors and by others that im high risk of strokes but they didn't do anything. After 17 years I started to get symptoms like bad headaches, stumbling with words and forgetfulness. My gp referred me to haemotologist and he put me on warfarin and said I should have been it at the beginning. Its frustrating having so many different opinions , i would try and get a second opinion if u can. Hope U get all the answers U need :-)

  • Hi and congratulations from me also to your baby girl !

    You do not have to be nervous about clots as you are still on Heparin 3 more weeks. Right? I can not answer your question but I am sure someone else on this site will do that later on

    You will have the answers you need. Enjoy your little baby girl !

    Best wishes to you and you baby girl from Kerstin in Stockholm

  • Hello

    Congratulations on your wonderful news.

    I think you should discuss this with your GP. Did you have any symptoms of APS other than the years of pregnancy troubles, headaches, dizziness, migraines, TIAs? If you feel that you did have these kind of symptoms you should certainly ask to be assessed for treatment to minimise them and guard against clotting issues.

    Where are you from?

    Best wishes.

    Dave

  • Thanks for the advice. Much appreciated. I'm in England- Cambridgeshire. I have never had migraines but I have had episodes over the last ten years of feeling woozy headed (best way I can describe it). Not dizzy as such but I guess light headed. I also had an episode of visual disturbance last year. I had an MRI for this which was normal. Other than that I have had good health, lots of energy and generally feel very well. I saw a Rheumatologist too who said same as Haemotologist. She said I didn't have symptoms consistent with autoimmune disease. There's clearly something going on as the evidence of pregnancy losses show. I'm going to try to eat really healthily and exercise as well to minimise risk.

    Just remembered I also had thrombophlebitis in a single varicose vein I have but was told that was because it's a varicose vein and happened in the pregnancy before I was diagnosed.

    In short, subtle symptoms I guess. I think I may seek another opinion.

  • Congratulations on your little girl. I was given the same advice after my daughter who will be 6 in september and to date I have not had any daily treatment. recently I have had some symptoms and am seeing a rheumatologist to see if there is any link. I am also participating in a research project about APS diagnosed after recurrent miscarriage.

    As others have said, seek a second opinion to put your mind at ease and enjoy your precious bundle

    Claire

  • I am in this same boat, except farther down the line. I had a dozen miscarriages before my diagnosis and was told to take baby aspirin every day to keep from miscarrying (that and Pregnyl shots in the first trimester). It worked and I have had 5 kids over those years (ages 2 to 16). I have also had daily "atypical migraines with aura" since my very first pregnancy, so 17 years of daily migraines that affect my vision.

    Last year I started having a lot of neurological issues that concerned me so much that I googled early Alzheimers and brain tumors -- terrible forgetfulness (I have always been very bad at remembering anything, but much much worse), fuzzy thinking, much worse vision problems (despite being told that my vision is 20/20), irritability, extreme fatigue, feeling neurologically overwhelmed a lot....

    My doctor sent me to a hematologist and a neurologist. The neurologist found that I'm having frequent seizures all the time. I never had any idea, but I never knew what to call these episodes that didn't seem like everybody else's migraines and made my brain feel so "fried." She says I probably also have migraines and she wants to put me on anti-seizure medication. The hematologist said I was anemic and put me on IV Venofer for 4 weeks and said I don't need to treat my APS at all. He said as long as I haven't had a stroke or major event, there are too many risks of blood thinners and that I should just deal with my neurological issues with my neurologist and that they're unrelated.

    I have since read that 10% of APS patients have seizures, and I know all of my other symptoms are so common. It is very frustrating to have doctors treating individual symptoms and telling me that APS is not an issue. Now I also have a worry in my leg, a large patch of it developed a strange swelling that has hardened like a giant patch of deep scar tissue over the months since January. The hematologist did an ultrasound to be sure it wasn't a clot and none of his staff had any idea what it was. My GP said I just bumped it and there was subdermal swelling but that's nonsense and it's now been 8 months. I googled the symptoms and found info about scleroderma (a rare autoimmune disease that causes hardening of the skin and internal organs) and found out that a lot of scleroderma patients have APS but apparently that is an even more rare disease. I'm going to see a rheumatologist about that and see if I can find one with any experience in APS at least so maybe I can get better answers on that.

    In the meantime, I have been taking daily aspirin to try to at least help with the APS. It seems to have helped a tiny bit but it also just makes me feel a little better about not developing strokes or anything.

    I wish I had tried to find more information all of those years ago rather than believing that APS was only an issue related to my miscarriages. I have had 17 years of "unrelated" issues like these seizures, migraines, memory problems, etc. and I can't help but wonder if meeting with one knowledgeable doctor could have helped avoid that.

    Alicia in Minnesota

  • Hi and welcome to this site,

    I am glad to hear you have got 5 kids. I think you sound very wise. We have noticed here that the neurologists do not understand this illness sowell.

    The key is to be well anticoagulated and the Rheumatologists and also Hematologists know about it. But unfortunately very few of then have the knowledge of APS.

    You live in the US in Minnesota and now you have to try to find an APS-Specialist! You can try this apsaction.org and perhaps you can find someone. Sometimes one of our members on this site come back with the name of a Specialist.

    Read "Sticky Blood Explained" and also "More Sticky Blood" by Kay Thackray. They are available for sale on Hughes Syndrome Foundation charity website. Very informative for us.

    Please come back and let us hear how you manage.

    Best wishes to you from Kerstin in Stockholm

  • Thanks so much!

  • Hi Alicia, I think it is a wise decision to be determined to see someone with experience of APS.

    Try this : www.apsaction

    I wish I had a magic rod that could give you the name of an APS-doctor near Minnesota.

    Kerstin

  • The link should be: apsaction.org

    Sorry!

    Kerstin

  • I would get a second opinion.

    I would think about going onto 75mg Aspirin anyway (tell your GP! but they can't stop you) and taking extra precautions for flights etc. And not go on the contraceptive pill etc...

  • Congratulations definitely ask for a second opinion, I think your Gp should arrange it before you come off anticoagulants.

    Happy times enjoy your baby

  • I can only speak from my own experience. I had 3 miscarriages in my 20's but two full term ones so had two healthy children. Back then APS was not known about. Over the years I had "bouts" of many things, suffered strange types of headaches, balance problems, muddled words, was tested for MS in my 30's after a bout of neurological symptoms. In my 40's joint and muscle pain became worse and fatigue crept in with Flares that would last for a few weeks. then in my 50's I had a sudden PE but no one tested me for APS. I was put on warfarin for 6 months as it was the standard treatment for a PE and guess what ? all my symptoms went away! Then the warfarin stopped and gradually everything started returning. By 2010 I was getting really bad and having to use a wheelchair. I saw a Neurologist who didnt even do a brain scan, had he done so he would have seen two small strokes.

    He told me I had Fibromyalgia! 3 months later I had two large strokes. I still tested negative for APS! 6 months later I met Prof Hughes and he tested me and diagnosed APS and Sjogrens. I already had Hashimotos. These three autoimmune diseases often run in a trio. I have since tested strongly positive on my anti B2GP1 and have been confirmed by St T prof Cruz and a Consultant Immunologist at the Royal London as having Hughes Syndrome. Im on Fragmin for life.

    The point of this story is to say that had I taken a daily aspirin since my 20's I would not have had a Stroke.

    Find a APS specialist and by that I mean either one from our list on the Hughes Syndrome website or go to London and see one. The peace of mind you will get will be worth every penny not just to you but to that little bundle of joy you have just brought into the world and who you want to be around to see their children. A daily aspirin is probably all that you will need but if you need more better you know about it now than wait until something happens like I had to.

    Congratualtions to you and your family.

  • Hope you do not mind that i react on your fantastic "history".

    I understand you do not trust Neurologists (I have also experienced they do not understand this illness.) Most remarkable is that this happended in 2010 and at that time APS was rather wellknown in England.

    Thank you for sharing your experience with us! We learn so much from that.

    Kerstin

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