A novice question

[Bella_Bee]

Hi everyone,

Forgive my ignorance on the matter but google is really not the best learning tool. I've been told I have APS after three tests (one was negative, the other 2 positive - all a bit baffling for me) but that's all I know. Are there different kinds? Of different severity? Do we know what causes it? What kind of further testing would you recommend? I'm currently pregnant and on blood thinners. So far so good but it's obviously a time of heightened anxiety. Grateful for any responses or even simply links to medical journals or links that cover this in detail.

Thanks so much

[Star13]

Congratulations on your pregnancy. Before reading lots of papers bear in mind that 20 years or so ago the success rate for pregnancy was quite low, now its up in the 90% rate so please dont go getting your self in a tiz and start worrying. It sounds like you have got a good Doctor who is looking after you well having got you on injections etc. Many members on here have successful pregnancies with healthy babies.

This is a fairly standard Medscape paper to get you started.

emedicine.medscape.com/arti...

[GinaD]

The doctor who first described our condition, Dr. Graham Hughes, has written a couple of books to help patients understand and deal with our immune system's craziness. I was diagnosed in 2000 after years of migraines, DVTs, and what I erroneously called panic attacks ( they were actually mini strokes!) . I was diagnosed, put on warfarin and ... that was it. Like the snap pf the fingers all those symptoms ceased. I know warfarin has a bad reputation, but much of that comes from non APS patients. If you are treated with warfarin, you will need to learn which foods have Vitamin K, ( which thickens your blood);and which further thin it (alcohol, ginger and others.) Regarding the antibody tests: antibodies rise and fall depending on .... what random infections you may have come into contact with, hormonal changes ( like pregnancy,) This is why the criteria for 2positives 6 weeks apart exists. After accidentally discovering a gluten sensitivity and starting a gluten free diet all my subsequent blood tests have been negative for all APS markers. But I am reluctant to stop warfarin as those strokes were scary!

We are certainly not doctors! But we can share our experiences. So feel free to post any concerns or questions you may have, and if appropriate ( again --we are not doctor-substitutes,) we are happy to respond.

[Bella_Bee in reply to GinaD]

Thank you so much, that's so useful. So what does it mean that you no longer have aps markers show up in blood tests? That you no longer have aps? Fundamentally I'm struggling to find a very simple explanation of what it is and what causes it. Is it curable or just manageable? And are there different kinds of aps, some worse than others? I've been told mine just affects me in pregnancy but it doesn't feel good enough as reassurance. I don't have other huge symptoms but I'm starting to wonder if my TERRIBLE long term memory (my friends and family have been making fun of that for years) could be related somehow. I'll look up those books, see if I can get some answers.

[GinaD]

There is disagreement in my case. Some hemes and rheumys want me off warfarin since my tests have been negative for so long. Some are sympathetic to my experience of warfarin saving my life. Currently I am on a compromise to lower my INR to a low as can be without symptoms. So far, I can be as low as 1.6 with no symptoms. So.... I may try going warfarin free in coming months. We'll see.

[Thick_Blood]

Many of us live every day with APS and life is normal, so I agree with Star13 don’t read to much into things. The cause of APS is unknown. It’s not curable but is manageable with blood thinners. There is a more serious version of APS called CAPS. That impacts about 1% of APS patients. I would not worry about that. Congratulations on your pregnancy.

Stay safe

[Stella]

I had very troublesome pregnancies 30 years ago but went on to have two healthy boys with the aid of heparin injections. Your doctor is obviously on the ball so enjoy the rest of your pregnancy. However, I would question if you should come off anticoagulants altogether once you have had your baby. I did and had severe problems in my 40s and 50s with cerebral APS. Make sure that your doctors are aware of your memory problems as that is definitely a symptom and come to a decision together.

[baba]

Good information on the main website

ghicworld.org/

[MaryF Administrator]

Hi congrats on your pregnancy. Having a great specialist who fully understands Hughes Syndrome/APS is vital in pregnancy and with diagnosis for this disease, it sounds like you have good care, not everybody has all symptoms, and any good doctor will keep an eye on your levels of Vit D, B12, Folate, Ferritin and Thyroid which can all add to the picture. I enclose a useful article: the-rheumatologist.org/arti... MaryF

[Bella_Bee in reply to MaryF]

Thank you so much, that's so useful. Has anyone tried to make an appointment with Dr Hughes himself at his Lupus Centre? Was thinking of giving it a shot.

[MaryF Administrator in reply to Bella_Bee]

He is around some of the time, but mainly retired! Not taking new patients. MaryF