I'm so confused :( - Sticky Blood-Hughes Syndrome Support

Hello everyone. After scouring the internet for far too long I've come across this site which seems like a great resource. Here is what is going on..

I have many signs of Lupus. So many that my Naturopath md ordered a ton of lupus tests. I had to wait almost 2 weeks to get them back.

The results were negative for all the "lupus" tests but my lupus anticoagulants came back positive.

So now we are like deer in headlights. I'll be seeing a rheumy but it'll take a bit to get in and I would love some information.

Can having positive lupus anticoag affect how I feel? Fatigue, back and neck pain, butterfly-flushed cheeks, swollen painless lymph nodes? Or is it JUST something than can give you clots and that's it?

Does having positive lupus anticoag test with the above symptoms mean I have hughes? Or would I need to have a blood clot and not systemic symptoms? I know another way to diagnose is to take another test in a few weeks.

I was actually hoping a lupus diagnosis would justify how I feel and all of my systemic symptoms but alas here I am still trying to figure out what's going on- and now on top of it I've had these positive tests.

Any help or info is so appreciated! I am in the US

Court

21 Replies

oldest • newest

Lure2

2 years ago

Hi Court,

Welcome to the APS-site!

I am in Stockholm and I have APS and I am Lupus Anticoagulant positive since 13 years and have the other two antibodies also positive.

Good that you are seeing a Rheumatologist but he or she must also KNOW this illness which is very important otherwise you will not get the right treatment which is also utmost important to feel ok again.

A Specialist and the right anticoagulation will be the two main things to fulfill.

Try to learn (after you have seen the Specialist perhaps) as much as possible about APS and read also from this charity website. A lot of info.

Read also "Sticky Blood Explained" by Kay Thackray. This book is not the newest and she does not speak of the latest oral anticoagulation drugs but she has APS herself and she writes about the different symptoms of APS and how it is to live with it. After i had read that book I understood that I had to do as the doctors suggested and that was to start Warfarin which I did not like at first but now I know its was my life saver. Stay on this site if you have APS as you will learn a lot from all our wonderful members.

Best wishes from Kerstin in Stockholm

Yes, I do agree with Mary. Oestrogene and birthcontrol pills should absolutely be avoided!! That is utmost important.

Some of us have also positive Lupus bloodtests together with our APS. I have primary APS (PAPS) which means I have only bloodtests positive for APS. It is important to get anticoagulation to make our blood thinner and to prevent severe damage to our body. That is why it is good when we are diagnosed and put on anticoagulation at an early stage. Some of us have gone with this illness for years without knowing what is is and had a lot of PEs and strokes and that may damage several organs as the antibodies may attack our whole body if we are unlucky.

We need an Expert of this illness who knows what to look for and knows the right drug for us to feel ok. Try to learn about APS as knowledge is power.

Lupus Anticoagulant is not the illness Lupus (you talk of butterfly red cheeks) but one of the antibodies for APS. Stay with us here.

Kerstin in Stockholm

hrprsmom

My butterfly rash is more of an INSANE flushing. There aren't lesions or anything (yet, at least). I have quite a few other symptoms to assume lupus or another autoimmune disorder. I have thought that well.. Maybe I'm just part of the super small % that doesn't show positive for lupus... But it's just so slim!! I emailed my regular pcp about all of this to present the posibility that if I had a positive lupus anticoag test then I may have hughes. She said I haven't met the diagnostic criteria yet (probably because I've only had the one test, so I'll have to wait 12 weeks and test again, or because i haven't had any clots or anything like that that I've known about). She admitted that she was unfamiliar with it and was going to look into it but now I'm back at "do I have hughes?"

in reply to hrprsmom

Did the Doctor admit that you have a Diagnose of APS?

Then I suggest you shall see a Specialist.

APS is treated with an anticoagulation drug. APS means too thick blood - and when the blood is anticoagulated we feel better. I had symptoms in 2002 but probably I had had small things (events) or pain in a a shoulder or tooth that I had not understood could be related to APS much earlier. I had before 2002 not heard of APS and did not know what symptoms you could have. This illness is only 30 years old.

A TIA is a small stroke and the neurological symptoms will go away or ease within 24 hours.

Perhaps I had much earlier had Lupus Anticoagulant in my blood and the other antibodies and no symptoms. It is difficult to say. Do not worry, that is all I can tell you.

When the blood is thick and need anticoagulation you get symptoms. i am not medical trained only know from own experience so please see someone who knows APS.

Kerstin

I'm so confused

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