I'm so confused :(

[hrprsmom]

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

[Lure2]

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

[MaryF Administrator]

Hi, yes with a positive L.A test you do have Hughes Syndrome/APS. Lupus and Hughes are sort of cousins!!! I enclose the suggested blood tests, and an explanation of them. It is crucial that your your Rheumatologist understands the full scope of this disease. Welcome by the way, and let us know how you get on.

hughes-syndrome.org/ This is the entire charity website which is really worth reading through, and now here are the blood tests and their explanations, best to do all of them: hughes-syndrome.org/about-h...

MaryF

[hrprsmom]

Is there a range as far as how "bad" you have aps or is it just you have it or you don't? I'd be curious what you guys thought about my actual test result numbers. I find this entire situation completely mind blowing! I really hope the rheumy I see is well versed on this syndrome. I'm on birth control pills. That's probably a really bad thing right? What other things should I consider or do as precautions before I get in to see a rheumy?

I appreciate all of you so much.

[MaryF Administrator in reply to hrprsmom]

Your birth control must be reviewed as a matter of urgency, and test results vary from person to person. There is some info in here re birth control. hughes-syndrome.org/self-he...

[hrprsmom in reply to MaryF]

This pack is just about gone. I'll ask to get on the progesterone only mini pill until I can see the rheumatologist

Thank you so so much

[MaryF Administrator in reply to hrprsmom]

Please consider getting the right advice before starting any pill, this is very important.

MaryF

[hrprsmom in reply to MaryF]

I've emailed my Dr but do you suggest I wait for the rheumy to change my birth control? Knowing what is going on now, it seems kinda crazy to stay on Yaz!

[MaryF Administrator in reply to hrprsmom]

I can't give out advice on medication but if it were me making that decision about myself I would not be taking any form of birth control pill at this stage but seeking and alternative form of contraception. MaryF

[hrprsmom in reply to MaryF]

I really appreciate your advice and will be discussing all of this with my dr

[Lure2]

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

[Hidden]

If you do some reading, you will see that there are about five percent of cases of SLE Lupus that present as seronegative (meaning that it does not show up on blood tests) for at least five years. You might still have SLE Lupus and it is just not showing up on the tests yet. APS can also cause joint pains and fatigue. I hope your Rheumatologist will be able to treat you and that you can get your symptoms under control.

J

[Hidden]

The butterfly rash on your skin is Discoid Lupus that only attacks the skin I believe! Here is what I read about this condition.

Discoid lupus erythematosus (DLE) is a chronic skin condition of sores with inflammation and scarring favoring the face, ears, and scalp and at times on other body areas. These lesions develop as a red, inflamed patch with a scaling and crusty appearance.

Having the Lupus Anticoagulant is more of a risk factor for complications from what I've read than just having one of the other antibodies. It is however not an indication that you will have any clotting events. I might be wrong here though, and if I am, one of the admins can correct me. I hope you get the answers you're looking for.

J

[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?"

[hrprsmom]

Hello everyone. Here with an update.

Finally had the repeat LA test done and it was positive again. So now I officially have APS.

They sent a referral for a haematologist so now just waiting to see what happensI

I wish I knew more about what to expect. I've never had a clot or dvt so not sure what treatment will be. Maybe baby aspirin?

[Lure2]

Hi again,

You should have an APS-Specialist, very important!

Perhaps Baby-Aspirin? I started with that but then I had that time TIAs, but it helped for a couple of years. Let them chek your D-vit, Calcium, Fe, B-12, Thyroid-panel (incl TF3 TF4).

Hope you stay with us!

Best wishes from Kerstin in Stockholm

[hrprsmom in reply to Lure2]

I'm in the US and live in Vancouver WA. Closest specialist would be near Seattle which is a couple hours away. Worth it? And what is a Tia? That is my biggest concern about being on baby aspirin. Will be antibodies continue to grow? Will I be on baby aspirin until something scary happens? It seems like so many what ifs.

[Lure2 in reply to hrprsmom]

Hi again,

Do not worry!

You have not had a TIA or clot and you have already had a diagnose with your Lupus Anticoagulant twice. That is good in a way as so many here go (like me) many years before properly treated.

Do not worry about the antibodies. They go up and down. I do not care about it at all after 14 years. I feel fine as long as I am properly anticoagulated.

7 month ago I suggested you should read "Sticky Blood Explained" by Kay Thackray. It is a good book and explains a lot of things. I suggest you buy it.

If you have got a diagnose of APS you shoud absolutely have an APS-Specialist even if you have no symtoms now. He knows what APS means.

Kerstin

[hrprsmom in reply to Lure2]

I have both that book and her 2nd one en route to my home right now. They should be there tomorrow. I plan on binge-reading them both.

I just wonder because she made it out as if my tests were positive, but not by much. I'm just wondering what to expect as far as the syndrome becoming worse over time? Or does the level not matter- aps is aps and there's not really varying degrees of severity? I'm just worried I'll be started on aspirin and inevitably something will become worse and I'll end up with a mini stoke or something..

[Lure2 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

[hrprsmom in reply to Lure2]

thank you so much for all of your replies. I'll be looking for a specialist in my area to explain some of the things I'm confused about.

I am fortunate that they found this before something more serious happened. Now I'll just have to wait..

[Lure2]

Exactly! Stay with us here also

Good Luck!

Kerstin