Hi,
I was wondering if anyone had been diagnosed with lupus anticoagulant (or another antiphospholipid antibody) and then have it go away? That has apparently happened to me, fortunately! In 2002 I went on birth control pills for the first time (even though I was well into my 20s) and promptly had DVTs with pulmonary embolism. After a year of warfarin treatment, I took a long flight and despite precautions, developed a clot in my leg. I had blood drawn and warfarin treatment was again initiated. I saw a hematologist and he said he thought that while my blood had tested positive twice for lupus anticoagulant, the cause of my clots was 1)birth control pills and 2)a long flight and he felt that the blood samples were not valid as one of them had been taken after heparin was started. Anyhow, long story short(er) I have been off anticoagulants for a while and recently saw a respected hematologist who retested me for lupus anticoagulant and some other strange hematological things. The tests all came back fine. I was overjoyed. The hematologist said that you can never count on these things to go away, but in some people they do. He told me not to worry and there was no need to see him again unless I developed some other disease or some symptom that could suggest a clot. He did take baseline ultrasounds of both my legs and a baseline CT of my lungs to put in my medical record for future reference. I was told that since lupus anticoagulant is acquired, mine was probably acquired from taking the birth control pills and for whatever reason they don't understand, just went away. Has anyone had this happen? BTW, I am about to undergo testing for autoimmune diseases as I had a positive ANA (I think) test and I've developed muscle pain and weakness, plus continued hair loss. I'm an anxious person (I'm usually over on the anxiety board), but I'm not anxious over this, I'm just interested in comparing notes with anyone who knows of a similar situation. Thank you!

Dear CircusSquirrel, I was hoping for someone who REALLY knows about APS would post, so I'll basically say HI. I've heard & read only some on APS (I don't test positive for it).

I have a close NON-LUPUS friend who doesn't test positive for lupus anticoagulant, ever. She's had clots for years, esp. in her legs. Her Dx was phlebitis. In other words, various things can cause clots, so my sense is that a dr. wouldn't see clots & say, Gee, it's APS & maybe lupus, where nothing else in the patient's history, bloodwork, etc. suggested APS & lupus.

I also have an acquaintance who DID test positive. She also tested positive for anti-Ro, anti-La, anemia, etc., and she had years of circular nonscarring rashes. She was Dx'ed with the SCLE (subacute cutaneous) "subset" of SLE. She had clear lupus signs & test results (skin biopsy & bloodwork) BEFORE turning positive for anticardiolipin.

Have you read much on APS? There's a "sticky post" (permanent post) at the top of the thread list on it. Also, the "Resources" tab above, and also the search box above, could lead you to more info.

Is your appt. with a rheumatologist? When do you go? I hope you keep posting. Meanwhile, best wishes. Bye for now, from Vee

(P.S. I was also Dx'ed with SCLE, in summer 2000, after MANY years of problems. In that subset of SLE, ANA is positive maybe only 2/3 or 70% of the time---so I fell thru the diagnostic cracks despite the red ring-like lesions all over my arms & torso, years of IBS & urinary problems, persistent anemia, hair loss, weight loss, migraines, joint pain, etc. 'Twas a mess!)

Hey CircusSquirrel! All this time posting on the anxiety board, I never realized we had something else in common. I also tested positive for lupus anticoagulant. I have had only one test, since my doctor doesn't think she needs to repeat it. I have never had a clot (knock on wood) and I am not on any blood thinners. This is a horrible thing to have when you're already a hypochondriac to begin with!!! :D Anyway - when I was looking online about this right after I had my positive test results I saw something that said that certain blood pressure drugs can cause false positive test results. I wonder if these wonderful beta blockers fall into that category??? Also, I read that these antibodies can come and go in a person. I read so many websites that contradict one another, but I just wanted to tell you about those two statements. I'm glad you're not testing positive anymore and hopefully you won't have any more problems with clots!

CircusSquirrel, I found a very concise APS article using the search box above, which I recommend that you try. (Board rules prohibit posting links.) There are apparently multiple conditions in which the antibody may be seen, lupus being only one of them. I'd never read such a list before. Interesting! Good luck on your upcoming appt.! from Vee

VeeJ,
Thanks so much for all the info! I checked out that link, it was more informative than most of the things I've read. I have my rheumatology appt. on Monday the 28th, so hopefully all will go well. My primary only ordered what she called "preliminary" blood tests like the ANA, she said she'd wait and let the rheumatologist order what he wanted since some of those were more specialized tests, so I figure I probably won't find out anything Monday, I'll just get a once over and a lab slip, huh? That's ok, though, I know these things take time. I'm sorry to hear that it took SO long for you to be diagnosed. I have terrible hair loss that was initially blamed on taking warfarin for my clots, but recently my PCP said that I definitely shouldn't STILL be losing hair a couple years after stopping a medication. There's no hormonal explanation for my hair loss, either, and then the joint pain suddenly got really bad. I've always had joint aches, didn't pay them much attention, now I feel like a creaky old lady (I'm 31 and have gotten myself in pretty good shape, too). I also get strange red rashes on my face after exposure to the sun, though they are not in a pattern. At this point, I'm not stressing, I just want to try and get some answers because all this joint pain and fatigue is getting me down. I'm spending my nights with a heating pad on my joints, taking hot baths, anything to help the pain.
Leela,
I hope you don't have any problems with clots, some people test positive for the lupus anticoagulant but don't have any clotting problems and some people have an entire spectrum of problems. The fact that you haven't had any problems bodes well. I'd just make sure to mention it to docs if you go on any hormones, schedule surgery, or that sort of thing. It sounds like your doc is keeping you informed, though. I know that only a small portion of people with lupus anticoagulant ever develop lupus, so that is reassuring, too.

CircusSquirrel, Let us know how your appt. on the 28th goes, when yo have time, OK? In your shoes I'd be happy for the rheumie to be in charge of all the specialized tests. Makes more sense, I think, because they use more specialized labs, maybe even have some of the more unusual tests---and they have more experience in evaluating test results, etc. I hope you get off to a really good start! Bye for now, Vee

If I am remembering what my doctor told me correctly, your positive or negative status on this coagulant stuff can and does change over the course of your illness. Am I completely off base with this? When I initially told my doctor that I wanted to get pregnant, he ran a check for these antibodies and told me I was negative, but that it didn't mean that I would always be negative. If I had been positive, he would have given me the choice of starting on asprin therapy if I became pregnant as a preventative measure to thin my blood and guard against a miscarriage. He then said that for women who have already miscarried a first pregnancy and test positive for this, they are usually automatically put on blood thinners during any future pregnancies. I know you aren't talking about a pregnancy situation, but just thought I would add my two cents. Good luck getting your symptoms under control!