Lupus anticoagulant

[kaylish]

Hello to all. Can somebody help me on this please? I recently had a blood test to check for Lupus anticoagulant.Almost three years ago I had a thrombotic event,was diagnosed with APS and put on warfarin.My hemotologist was quite pleased with my recent result and said if it further imrpoved in 6 months I could come off warfarin.I guess warfarin has become my security blanket....is it safe to go off it ? Does APS come and go and if it goes is there a chance it may come back after I go off warfarin.Does this mean I would no longer have a diagnosis of APS or am I always at risk?? Any help would be appreciated.
Thanks.

[JoD]

I am allergic to warafin. I am required to take lovenox or heparin injections if warafin is required at anytime. I take Plavix or aspirin( depending on what other meds I'm on at that time) at all other times. I have Lupus as well and some medications have aspirin in them. It certainly is something to talk with your doctor about as each of us requires individualized medical programs with APS.
Joanne

[Hawkeye]

Hi Kaylish,

Once you have a diagnosis of APS especially with lupus anticoagulant it does not go away, the antibodies come and go but you are always at risk.

The better person to decide this would be a rheumatologist experienced in treating lupus and APS.

Good luck and keep us posted.

Hawk

[kaylish]

Hiya. Thanks for the info and I have done some research myself. I spoke to my Doctor about it recently and he told me any decision about warfarin would be totally my decision. This gave me some security :)) I have been told that coming off warfarin after a diagnosis of APS increases your chances of developing a clot by between 20 -70%. As my Doc said this is probably a higher risk than the risk of bleeding internally from warfarin. APS was only discovered in 1998 so it is still a relatively new disorder. There may only be one clinical manifestation of APS...one episode of a clotting event and then none ever again: it cant be concluded that the threat is gone.

[kaylish]

Just read this post of mine I wrote last year. I had the Lupus anticoagulant blood test done and it was borderline so I stay on the warfarin. It was interesting to note that the blood test I had done which showed a good result was just after Ivig therapy which I have read,can have a positive effect on APS. The next one I had done which was borderline, I made sure I had when I was just due for Ivig...food for thought

Kaylish

[ms1128]

Hello Kaylish!

I have 'APS' and lupus. It was my GP who found that I had Hughes Syndrome. It was on a lark that he tested me for the disorder. I had been suffering with major complicated migraine headaches for 25 years.

I was sent to a hematologist, and at that time he said not to worry. Three months later I had a series of CVA's. I was put on coumadin for about a year and a half.

I was later seen by a stroke specialist, and because of my 'fluctuating' INR, he convinced my doctor that it would be safe to put me on daily aspirin.

I have had one small episode since then, which has caused some small facial drooping around my mouth. On occasion, I get a high reading for prothrombin time .

I cannot go off the aspirin for any reason....not even surgery. I am at high risk for stroke.

I am happy not to worry about internal bleeding or contact injury. I see my doctors regularly.

I wish you the best!

take care
Catherine

[kaylish]

APS is such a complicated disorder that little is known about as it has only been known about for 20 years. I had the migraine headaches in my teens and grew out of them in my 20's. I had one miscarriage and 3 live births which I was told I was very lucky to have. In the year leading up to my diagnosis ( 3 years ago) I developed a droop in my eyelid but have had nothing since. I am however going through the menopause which because of APS has been difficult. I cannot take HRT due to the estrogen content and I need a hysterectomy which my gyno will not do because of risk involved. I am told the best thing to do is sit it out as things should improve when I am though the menopause. We live in hope :)

Take care
Kaylish

[JoD]

APS is such a complicated disorder that little is known about as it has only been known about for 20 years. I had the migraine headaches in my teens and grew out of them in my 20's. I had one miscarriage and 3 live births which I was told I was very lucky to have. In the year leading up to my diagnosis ( 3 years ago) I developed a droop in my eyelid but have had nothing since. I am however going through the menopause which because of APS has been difficult. I cannot take HRT due to the estrogen content and I need a hysterectomy which my gyno will not do because of risk involved. I am told the best thing to do is sit it out as things should improve when I am though the menopause. We live in hope :)

Take care
Kaylish

It is a tradeoff always. Would the hysterectomy do more than the risks of having surgery.
I had Cochlear Implant surgery after being diagnosed with APS. I am allergic to coumadim so I took lovenox injections two weeks before the surgery and for 1 week after. When ever I have any sort of invasive procudure ( could be as simple as a skin biopsy) I go on lovenox for a while.

[ms1128]

Before the aspirin, I was changed to heparin, and was hospitalized when I had muscle biopsies.

Kaylish...I too, lost one baby mid term. Long time ago. I have 3 daughters.

take care
Catherine

[Eyzrbrn]

Are any of you on Plaquenil?

On page 6 of this newsletter is how Plaquenil works in APS patients: http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf and here: http://bloodjournal.hematologylibrary.org/cgi/content/abstract/112/5/1687?ct=ct and here: http://ard.bmj.com/cgi/content/abstract/ard.2008.093013v1