LUPUS ANTICOAGULANT DISORDER IS NOT LUPUS!

MY DOCTOR TOLD ME THAT I HAVE LUPUS ANTICOAGULANT DISORDER. HE SAID I DO NOT HAVE LUPUS. TWO DIFFERENT THINGS. I AM CLEARING THIS UP.

SOME PEOPLE WITH LUPUS HAVE LUPUS ANTICOAGULANT. BUT IF YOU HAVE THE LUPUS COAGULANT DISORDER, IT DOES NOT MEAN YOU HAVE LUPUS.

LUPUS ANTICOAGULANT WAS NAMED WRONG, MY DOCTOR SAID. IT IS A BLOOD DISORDER (THICK BLOOD) DUE TO AN AUTO IMMUNE RESPONSE, WHICH THEY STILL DONT SEEM TO KNOW MUCH ABOUT. THEY SHOULD SPEND MORE TIME CURING BLOOD DISORDERS. THERE ARE HUNDREDS OF THEM.

I TAKE COUMADIN FOR LIFE BECAUSE I HAVE LUPUS ANTICOAGULANT DISORDER. AND BELIEVE ME, I HATE TAKING IT, BUT BECAUSE THEY HAVENT INVENTED AN ALTERNATE TREATMENT, I , I LIKE SO MANY OTHERS ARE FORCED TO TAKE COUMADIN(WARFARIN) FOR LIFE. IT HAS SO MANY RISKS ASSOCIATED WITH IT. AND IT MAKES ME TIRED AND GAIN WEIGHT AND ACHEY JOINTS. AND MY LEGS SWELL AND I HAVE BLOOD POOLING IN MY LEGS, CAUSING THEM TO LOOK RED OR TAN FRECKLED LOOK FROM THE CALF DOWN TO MY TOES. BLACKISH BLUISH FEET AND TOES.

I WENT 61 YEARS BEFORE I WAS DIAGNOSED WITH LUPUS ANTICOAGULANT DISORDER. I HAD GONE TO ER WITH SHORTNESS OF BREATH AND THEY FOUND 2 SMALL CLOTS IN MY LUNGS. THEN THEY TESTED ME FOR ABOUT 300 THINGS AND ONLY FOUND LUPUS ANTICOAGULANT. ITS A SPECIAL BLOOD TEST DONE WITH VYPER VENOM. AND ITS DONE ATLEAST TWICE TO CONFIRM THE DIAGNOSIS OVER A PERIOD OF MONTHS.

ANYONE ELSE HAVE JUST THE LUPUS ANTICOGULANT DISORDER AND NOT LUPUS?
PLEASE WRITE ME IF YOU HAVE SYMPTOMS SIMILAR TO MINE. I THINK IT MAY BE HEREDITARY AND I WANT MY GROWN CHILDREN TO BE TESTED FOR IT.

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41 replies. Join the discussion

pilgrim30 you story is so beautiful and inspirational, what a blessing you are to have survived 4 strokes! God bless you

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i have a post/discussion that i made that i think you should read :) I have heard that if you test your children before 21 that they will come up negative for it, but if you test after that it may show up if it exists. Supposedly they thought it was hereditary but now are finding that it just is. Sounds to me like they have no idea. As for as conditions go this is really not a bad one. Take care if you need someone to talk to feel free to chat.
-A

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CaliJoann:
What you said in your last post is true; people with Lupus can have LA also, but it is also true the people with LA CAN develop Lupus. It's important to keep checking up with your doc, and he/she should be periodically testing you for Lupus and/or checking everything in your blood. My doc checks me every 3-6 months.

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Hi,
I am 36 and was diagnosed with the Lupus Anticoagulent about 3-4 yrs ago because my PTT was off. I was lucky to never have a problem. My Dr. said it was a mild case and put me on asprin, which I have been taking for a few yrs. I have never been diagnosed with Systemic Lupus, but I am feeling sick all the time. I have Raynoid's Phenomina, constant flu like feeling. I am starting to wonder if there really is a connection, and they just haven 't figured it out yet.

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I just found out that I have lupus anticoagulant too. Have to do more testing though. I'm also 61. I had large blood cots in my leg and had to have bypass surgery which lasted only 8 days. On coumandin since Jun 07 and will be rest of my life. I also have redness, freckles on legs, and black toenails. Any advise would be apprecitated. Thank you and Merry Christmas and Happy New Year to all.

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In reply to:
By remjrm
Posted today at 1:30 pm
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I just found out that I have lupus anticoagulant too. Have to do more testing though. I'm also 61. I had large blood cots in my leg and had to have bypass surgery which lasted only 8 days. On coumandin since Jun 07 and will be rest of my life. I also have redness, freckles on legs, and black toenails. Any advise would be apprecitated. Thank you and Merry Christmas and Happy New Year to all

Dear Remjrm:
It's spooky that we have exact same symptoms. prior to my being short of breath and going to ER and then being admitted for a week while they thinned my blood down, I had fallen forward onto my knees on an inclined cement driveway while pushing a garbage can on wheels to the curb. It hurt so bad I laid there crying until someone found me. Then 2 weeks later I had shortness of breath. so i sort of believe the fall brought on my clots and i didnt know i had lupus anticoagulant disorder until hospitalized at age 59.
I am 61 too, as you said. I went to a hematologist/oncologist who then sent me on to a rheumatologist who told me i had an elevated ANA (ANTI NUCLEAR ANTIBODY). THEN I WAS TESTED TWO MORE TIMES AND IT WAS NORMAL. I AM TO BE RECHECKED IN 6 MOS. THEY DONT THINK I HAVE LUPUS, (SLE) BECAUSE I ONLY HAVE 50% OF THE SYMPTOMS. BUT IT IS MADDENING NOT TO KNOW WHY YOUR DIAGNOSIS IS. I DONT KNOW WHAT STEP TO TAKE NEXT. I JUST KNOW I HAVE TO TAKE 7 MG OF COUMADIN THE REST OF MY LIFE AND IT MAKES ME FEEL TIRED, ACHEY JOINTS AND GAIN WEIGHT. LIKE BEING POISONED SLOWLY. IT DOES HAVE SAME INGREDIENT OF RAT POISON WHICH MAKES RAT BLEED INTERNALLY UNTIL THEY HEMORRAGE AND DIE. MY DOCTOR SAID COUMADIN CAN EVEN CAUSE BRAIN BLEEDS IF YOU'RE NOT CAREFUL.
LETS STAY IN TOUCH.

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Hi everyone: I was diagnosed with Lupus Anticogulant in my early 30's when I had my last child and was told by my hematologist to take a baby aspirin everyday. He said my chances were 50-50 of developing Lupus. Recently I had a yearly physical and my blood platelets were in the 700's (normal 150-400). They have been this way for 3 years only this new doctor mentioned I should go to a hematologist. Now they want to do a bone marrow biopsy (not crazy about that) to find out what's wrong. I have always tested positive on the ANA test. Has anyone had high platelets with the Lups anti-coagulant disorder. I have no Lupus symptoms.
Thanks, Lizzie (scared)

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I have lupus anticoagulant but not lupus. My doctor said that they wouldn't test anyone else in my family unless they have symptoms. So far the only other person in my family that has had blood clots is my grandma but they didn't even test her for the lupus aticoagulant because she is already taking coumadine.

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I have gotten such wishy-washy answers about my Lupus, systemic one time, non-systemic the next, and back and forth. I also have Sjogrens syndrome. There are a lot of different issues going on. I don't know who there is in my area that would think to or know how to check for LA. But, my feet and ankles do turn black, looks like black/blue bruising all across the tops of my toes and feet and blotchy at the ankles. I get red speckles and have a lot of broken varicose veins. You would think with all of the blood draws I've had lately they would notice if my blood was coagulating normally.
I have bloodwork for kidney panel and extensive MRI study of my kidneys as last hospital stay there were leisions found on both. My CT's and Ultrasound has been examined by two radiologists and neither can come to a definitive conclusion as to if these lesions are tumors or cysts. Since I have had so many tumors (Tumor Tessie) I would not be surprised if they were tumors. Blessedly, every tumor I've ever had has been mixed tissue (I have CTD also) and benign. So, I'm not worried about that, I AM worried about getting my thyroid out...which I've argued about for years and the outcome of my last arguments and seeing a new surgeon will be. My GI has ordered thyroid panel because I have no appetite, no weight gain or loss.
Everyone on this site is so great! I wish I had more time to spend on here. I get pretty bound up with my Organic Acidemia posts (I'm 500 e-mails behind now). If anyone wants to contact me though, my e-mail is psjaquith@aol.com...direct contact at psjaquith@grandecom.net.
Blessings,
psjaquith

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Hi, my name is Jamie, and I was diagnosed with lupus anticoagulant after having 2 miscarriages within a 6 month period. My doctor told me that it is a hereditary disorder, and that it would be good for my future kids to be tested. She told me to take baby aspirin once a day, and once I get another positive pregnancy, to come into the office right away for a prescription for Hepron to take once a day by shots in the belly.

Has anyone else had miscarriages due to this, and if so, did they have success in full term pregnancy after medication? I am pregnant again, and I am worried I will lose this one as well.

Thank you,

Jamie

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My Boyfriend has Lupus anticoagulant which was diagnosed 4 yrs ago, but only after a below the knee amputation because of it. John is 48 and we have no idea whether other limbs etc will be affected in the future so we are trying to learn as much as possible about this disorder.

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I have had Lupus Anticoagulant for 8 years, and know it does not mean you have Lupus. One thing, it is actually "thin blood" as your PTT is elevated, meaning it takes longer for your blood to clot. The reason you got clots, or are at risk for them is that as the "thin blood" collects in corners and crevises of your arteries, it becomes clotted or thicker. I have not had a clot caused by this, and have a very high PTT, usually. I did have to take blood thinners after gall bladder surgery and must not sit on a plane, etc. too long without walking. Lupus anticoagulant is one of the 11 criteria for SLE/Lupus. After eight years I have just been diagnosed with Lupus as I have had many other criteria come upon me recently (pericardits, pleurishy, scleritis, joint aches, antiphospholipid syndrom lab results, etc, etc.) I am 57 years old. They are now thinking of putting me on Coumadin, but because I had a very large pericardial effusion that ended up in Cardiac Tamponade, they are waiting to see if the effusion will go away completely. They drained over 1 liter of bloody fluid, initially, and it has come back slightly. It's a 50/50 proposition for me, as I run a risk of a cardiac bleed out or a clot, as I also had a seizure at the time of the tamponade and an earlier TIA which showed up in a recent MRI. I hope this helps.

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Hey. The same thing happened to me. The only real difference is that I'm only 19. I was diagnosed with it thursday. I went in for chest pains and gasping for air after getting home from florida for spring break. I have an appointment in July to test for the Lupus anti coagulant again. If I still have it, I will be on thinners for the rest of my life. The worst part is that I play soccer and softball and all this started at the beginning of softball season.

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A new diagnosis of Lupus Anticoagulant is always scary, but not as scary has blood clots in the lungs! Take care of yourself. I was 50 when diagnosed with Lupus Anticoagulant (now 58). Never had a clot caused by it, so I am not on Coumadin. They told me if I get one, I will be on for life. I fly a lot, so it made me nervous for a short while, but I just make sure to walk around as much as possible. Now, eight years, later, I have just been diagnosed with Lupus and secondary Antiphospholipid Antibody Syndrome (part of the criteria for APS is having a positive lupus anticoagulant). Due to developing that they are considering Coumadin, but I have other problems that could make Coumadin life threatening. Incidentally, LA is having thin blood, that is why it probably takes your blood longer to clot than others. Normal is below 35. Mine has always been between 38 and 113 (seconds to clot). The problem with clotting is that the thin blood catches in the corners of your arteries, making it easy to clot in the corners, etc. Good luck! You may never get Lupus, as you are right, I was also told they misnamed LA. I was seeing a hematologist about the LA, but now also see a Rheumatologist due to the multiple autoimmune diseases, and now Lupus that I have. LA is an autoimmune disease.

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Hi-
I replied to you because you are the youngest member I see closest to my daughter age 17. Last week she spent 4 days in the hospital with multiple blood clots to her lungs. She is on the heparin shots twice daily and coumadin. We are waiting for the lupus coagulation lab test to come back. Did your first test come back positive? I did not know they will do two.
My daughter is an athlete too. I hope you can still play ball. I also hope you have support. Maybe after we have all this figured out she can communicate with you on this site. We are in MA. My heart goes out to you-its a bit scary and sounds like so many differences of opinion.
Keep your chin up and hopefully keep swinging the bat too!

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hello lovemydaughter. I was only on heperin for the clots. I was also anemic at the time and they didn't want anymore chance of extra bleeding since they were taking like ine tubes of blood a day chech the coagulation levels. My first tests did come back positive for LA and I also have a factor 5 genetic mutation a.ka. higher risks for clots. so either way i'm screwed, but my mom did research on LA and found that Heprin and anemia can cause false negatives. I get tested again in July and trying to stya posistive that it was just a false positive. However, either way I'm playing soccer and softball. I told my parents make it my death wish if it comes to that. Life would not be normal without my contact sports.
I'm from IL. I would love to keep in touch with you or your daughter if you feel the need. I'm here if you need me.

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Thanks Porter-your reply means a lot to me. Until we know more I am allowing my daughter to try to keep her days as normal as possible ( out side of daily blood tests etc).
Thankfully lacrosse had just ended for her. She is a competitive swimmer also.
Your mom and I are in a tough place as far as agreeing to sports or no sports. I know what I'd do at 17 and 19! But as a parent its a difficult question. Just be careful and you will. Steal a base, slide, awesome raspberry on the hip to show for it?-then watch it closely and if issue you know what to do-get yourself checked out. Don't mess around or ignore.
Have a great day kiddo-love your spirit.

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Anytime. I actually bruise less while on coumadin now which has everyone confuzzled but any ways since it was at the beginning of my softball season I did practice with the team and did what I could. I'm thankful that all this happened more towards the end of school and not at the beginning where i would of had to sit out for soccer too. If it was up to my mom and not the doctor who has to sign the release form inorder for me to play sports, she would let me because she knows that my life would be abnormal and depressing without my sports. I'll be sure to pay close attention to and raspberries that accumulate.
As for the blood test, in sense unfortunatley they do become a normal part of life, at least while on blood thinners. I have had so many blood tests that I no longer pass out when they take it. luckily my doctor's office has a finger prick test kind of like what diabetic people use and it gives the INR/PTT reading right there instead of taking a tube or two of blood and then waiting a few hours for results to see how much coumadin i have to take.
thanks for your replies. I hope your daughter gets back on her feet real soon.

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I was diagnosed yesterday with a LA (lupus anticoagulant) positive test. I am 47 years old, and had my first blood clot in my leg at age 28 (when I was 9 months pregnant). Now at age 47 I have had a couple of years of DVTs in my legs with on again, off again, usage of the medication wafarin. Finally my vascular surgeon recommended that I see a hematologist to find causes of the clotting. He said with my first clot happening when I was 28 that I should see if there was a hereditary cause.
My grandfather had many blood clots in his legs, and eventually he died from on that went to his lungs (I believe).
The hematologist told me yesterday that the only test that came back positive was the lupus anticoagulant one. At first I thought he was telling me that I have Lupus, but he said no it was not lupus, and is a misnomer.
I am still trying to find out what this all means, but I have been put back on wafarin, and will have a retest in September.
I have been reading on webMD.com about LA, and am starting to scare myself, reading the autoimmune stuff.
By the way, the answer to the heredity question is that the LA is not linked in that way, according to my doctor.
I am wondering if any women on here see a link to hormones, for example that being a trigger for bloodclotting. When I had one at 28 I was pregnant, and now that I am nearing the ending of my menstral cycles, there is a peek in clotting also.
I guess these are questions for my doctor, but I am throwing them out there to this support group.

Thanks,
lauralm

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I was diagnosed with LA after 3 miscarriages. I was told that it is not lupus. That the ONLY thing it would affect is pregnancy. I was put on baby asprin and 6 months later was pregnant. My dr. also had me take extra progesterone, to strengthen the uterus. I now have 3 beautiful children. I was also told its not hereditary. I have no blood clotting issues at all, and don't take any medication to control it.

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