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LUPUS ANTICOAGULANT DISORDER IS NOT LUPUS!

calijoann
0 Recommendations

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.

Explore topics in this discussion:

Autoimmune diseases Surgery Miscarriage Coumadin Stroke Mixed connective tissue disease Pain Lupus Fibromyalgia Heartburn Depression Infertility Warfarin

23 replies

barbsdaughter

I was wondering if you could fill me in I have Lupus but it seems like someting else is really wrong and am wondering if it is lupus anticogulant disorder Can you tell me what the symptoms are I am in MA. and the cold rainy weather that we have been experiencing is really hurting me Even though it is 50 -60 degrees out, my feet and hands turn white then almost black every bone in my body hurts yet docs say it is lupus It is almost like I get frostbite every time I go outside Your help would be greatly appreciated

calijoann

Sometimes there are no symptoms to the lupus anticoagulant disorder (thick blood). I first found out about it when they found two clots in my lungs and tested me for it.
If there are symptoms, I would say bad circulation problems like black toes or blotchy freckle like rash from calves down to toes that disappears after elevation of legs, only to return when you get up on your feet again. Sometimes my legs hurt and swell. They feel very warm to the touch. I am not sure that these are symptoms of LUPUS ANTICOAGULANT DISORDER, but these are my symptoms.

A blood test done with vyper venom will confirm LA.

Yours sounds like Raynauds or frostbite (turning white)http://www.medicinenet.com/raynauds_phenomenon/article.htm

I AM NOT A DOCTOR- JUST A GUESS.

tzadworny

Hi,
I had to reply to this. I have Lupus but I also have Mixed Connective Tissue Disease which is a mixture of autoimmune diseases. What you are describing is Raynaud's Phenominom (sp?). I have that along with Fibromyalgia. My hands get "dusky", white and go numb when I am in the freezer isle of the grocery store. If you tell you doctor (hopefully you are seeing a rheumatologist for the Lupus anti....) they will be able to explain it better. There really isn't anything they can do except for try to get you to keep your hands warm. I wear gloves when I go grocery shopping, I look like an idiot but hey what are you going to do. On my really bad days (when I am in a flare) and I need to go shopping I have my husband do it. Hope this helps, I am no doctore but I have been dealing with this crud since January of 2003 and have read up on everything and ask all my doctors every question even if I sound like an idiot.

pamm

Hi,
Well I was told this evening that I have LA. Finally after 18 yrs I have a name for what has been happening to me. This started when I was 23 (1991), I took birth control for two week period and ended up with DVT in both legs and a PE in my left lung. I have one of the old style greenfield filters that are permanent; but there is a problem... it's clogged with blood clots and it has a broken arm. It needs to be replaced but I was told they could do it, it's risky, but I don't have insurance, medicaid, or medicare. So... Memorial Hermann in Houston, TX said they want a $65000 deposit before they will even see me to start the procedure. So like the rest of us people out here I'm SOL. The question is... when does the time bomb explode? So I'm living with it... oh did I mention that my body is rejecting the warfin... can anything else go wrong... of course it can.
Good luck to the rest of you!

lighthousedreams

I've lived with Lupus-anticougulant since Aug 2000
A pulmonary embolizm to my right lung is when I found out that I have this.
Yes i also was told by one of my Dr.'s that Lupus-anticougulant was not related to Lupus and in my case was not hereditary. Did have my daughter tested a couple times and she was negative.
When I got sick it was an attitude adjustment in my life.
I've been reading up on a lot of different researches & even though the Dr.s say that Lupus & Lupus-anticougulant are both different. All the research that I've been reading up on says different. Some where down the line there both tied into each other some how.

calijoann

There may be a connection between them, but Doctor's say no. Lupus anticoagulant was named wrong, my Doctor said, because it is thick blood, not a thin blood (anticoagulant).

A lot of people with Lupus have this LA (lupus anticoagulant) but they are not the same. They probably named it Lupus Anticoagulant only because a lot of Lupus people have it.

I would watch myself for the other symptoms of Lupus. and if there's a blood test for Lupus, we should get it. My doctor emphatically says I don't have Lupus, but I do have Lupus Anticoagulant Disorder which is confirmed with a blood test with viper venom.

pilgrim30

Hello Pamm! Try going the alternative route if you cannot afford a doctor or surgery. The following is the truth. Not many can state that they are a miracle walking. However, I can.
I had 4 strokes at once. Also my carotid arteries were plugged at the same time. The left one was 100% blocked, the right one 75% blocked, even though 3 months earlier they had been fine. I was told they could do nothing for the left one, but the right one could cleaned out. That required being taken off warfarin and complicated surgery which involved clamping off the right one with a shunt to get blood to my brain. Remember, the left side had no blood at all going to my brain. I went on Capsicum (Cayenne). Health food store variety. Start with one capsule a day at breakfast. It may irritate your stomach. If so, drink some milk. After a couple of weeks, go to 1 capsules twice a day. Then after about 2 more weeks. go to 2 capsules twice a day. Take the second dose at lunch. Eat, drink before and after taking them to minimize stomach irritation. If you have an ulcer, you might have more irritation than someone who does not. Yet, sometimes capsicum has been known to cure ulcers.
I took two capsules a day for a while before the docs had me in for a "4 Vessel Arterial Run-Off" - which was to see how badly the carotids were blocked. Imagine the doctor's excitement when he discovered that the left carotid was 100% CLEAR and the right one only about 35% blocked!!!!! I have been on 4 capsules of Capsicum a day since then. I have no more blood clots, and my carotid arteries are just fine. I feel that God has something in mind for me - even though I will be 79 years old soon. Perhaps that "something" is to tell you about capsicum. :D
If you wish to learn more about capsicum, google or bing it.

pamm

Hello everyone - Thank you Pilgrim30 for the information! I am going to take your advice and research what you recommended. I do have some stomach trouble but I think that I am willing to risk some heartburn if this will help with my problem. I have to say I'm still ticking away...the explosion hasn't happened yet, maybe your advice will help diffuse the bomb. It's worth a try.
I am 41 years old, and I have 4 nieces and 1 nephew I would love to see grow up and give me great grand nieces/nephews.
I want to thank y'all for the advice and encouragement.
Bright Blessings to all!
Pamm

pilgrim30

Hello Pamm! You are welcome. Glad to help. The clerks at any large health-food store should be able to answer any questions you may have. They may also be able to show you how to manage your health.

I like this saying: May you be blessed as a seeker of truth and may the Ruler of the Universe prepare you with wisdom and discernment for the times ahead.

pamm

Hello Pilgrim30,
I went to the herbal store. Looked at the Cayenne (capsicum). Found one with Butchers Broom in it @ 40K units. Then I found one @ 100k units w/ nothing in it. So I asked some questions which they (the lady that was helping me) couldn't really answer. So now I will pose the question to you... which one have you found to work best you and why? And, in making your decision how did you go about doing so?
Thanks once again for the help!
Bright blessings!
Pamm

miller123

hi im 33yrs old and been ill for last 2yr joint pains fatigue and depression these symptoms happened after the death of my grandad.
i was diagnosed with lupas anticoagulant in july 09 and osteo arthritus which i had a steroid injection into my joint which i found to be very good im also taking asprin daily to thin my blood.
i am shockingly tired daily and in pain with my joints which seems to have took over my life i was wondering if anyone knows if this will be what my life will be like forever please reply to my question
thanks

jblueeyes

Just to set the record straight, please google Anti -Phospholipid Syndrome. This is the true name of the disorder ya'll are speaking of. I research Everything that I have. I just happen to also have Lupus but yes, they ARE two seperate things.My body is so bruised from taking blood thinners for so many years that it's embarasing.

shev

I also have the lupus anticoagulant and not lupus but I found this out after my first child was born when I had massive clotting.I have blueness in my left leg from lower calf to toes and then it looks about 3 shades darker than my right leg(this is because I have an old clot in my left femoral vein that they say is a "white thrombus",my left leg is always 2 inches bigger than my right.
Coumadin makes me tired all the time and I have pains throughout my body.My doctor say's coumadin does'nt make you tired. Alot of what I'm told I question because I know my body but I'm told different,I would sure appreciate any feedback on symptoms. Also do I have to be on other meds or is coumadin the only one.
Interestingly my grandfather died from blood clots in the left femoral vein that went to his heart and my aunt had numerous blood clots-I was told this is not heriditary but I worry for my kids. I guess we have to wait on further research,it seems alot of doctors are not experienced with the lupus anticoagulant.

Hashithang

I disagree, every Rheumy will tell you something different i noticed. I have had 2 TIA's from LA. And I do have Lupus too. Lupus is damaged my kidney's very badly, heart inflammation, lung problems. lymph node inflammation, I test postivie Anti-DNA Antibody which is a special lupus antibody direct directly as kidneys!

pilgrim30

Hello Pamm.Sorry this was not answered in a timely fashion.

I need to say, I take 2 mg of warfarin daily. I feel that the supplements I take, and especially the cayenne, helps protect me from the bad effects of the warfarin.

I've been "into supplements" for 30 years now. I do know a bit about them, but I am strictly a novice. I've read lots of publications, have had good mentors and taken many herbs and supplements over the years.

When I shop, I do so at thevitaminshoppe.com online. If you know what it is you need or want, it is the place to find it. But you need to do a lot of research online first before you decide what you need.

Personally, I don't think I'd mess with anything mixed in with the cayenne. If you want somethings else, take it separately. That way, if you experience a problem you can manage to isolate the thing causing the problem.

What I settled for is Nature's Way, 40,000 H.U. (heat units). There is nothing else in these capsules except cayenne. 450 mg per capsule.

Back to thevitaminshoppe.com - they have such a huge site, it may take you a while to learn to surfing your way through it. They have a flat $4.99 shipping fee regardless of how much you purchase, from one item to many, I've dealt with them for about 20 years and never had a problem. I started out ordering from their catalog then progressed to online shopping. I've been shopping with them online for 12 years.

If you wish, I have a brother who is a self-taught nutritionist. He is now 90 years old and the most healthy one in our family. :D He might could steer you in a direction that I am not aware of.

He deals with Mannatech vitamins - which again are expensive. If you wish to write to him, tell him I sent you. WillissL at aol dot com. He would be glad to speak to you over the phone to counsel you. Good Luck.

tay_16

hello im 16 years old & i just got out of the hospital because i had blood clots, & they discovered that i have 3 blood disorders & one of them was lupus anticoagulant. every since i been on warfarin its been making me lose weight.

calijoann

That's funny. I gained weight on warfarin, didn't lose it. I've read online that people gain weight. i did a search.

All medicine can be hard on your liver.

I really hate warfarin but there is no alternative yet. One doctor told me spring of 2010 they will have a better drug out that isn't as dangerous. Canada already has it out.

Biggest danger of warfarin is bleeding. Even brain bleeds, so don't overdose and get tested once every 2 weeks or as your doctor directs you.

I get swelling and my legs are mottled and sometimes my toes are blue/black, but it's from venous insufficiency. Soon as I elevate, it goes away. I also have lupus anticoagulant discovered only because they found two dvt (clots) in my lungs. I was lucky they found them. I had no symptoms except I was a tiny bit short of breath. Then I went to ER. So listen to your body. It doesnt lie.

JoAnn

sdryana

I'm a 32 yo male who suffered 2 known TIA's (age 26 and 30) before they diagnosed LA. The 2nd TIA or stroke (its been debated) was severe enough to hospitalize me for 4 days and I have lasting nerve damage in my face. During the exams Drs found my clots were accumulating in the lower left ventricle of my heart and were releasing little fragments over time that were causing my sudden loss of feeling in my limbs. I'm being told I'm on coumadin for life. My wife and I have been trying to conceive for 3-1/2 years and have been successful twice but both ended in miscarriage. Does anyone know if this condition or the therapy causes infertility in men? Also, what is this new therapy people are mentioning?

LoveandMemories023

My doctor has said the same thing. LA was simply incorrectly named. Additionally, it is not genetic; it is spontaneous. My LA was diagnosed when I was 18 years old. I had a huge clot in an artery in my leg. I was wondering if anyone else expressed symptoms at a younger age?

calijoann

lighthousedreams.. you said somewhere down the line the two are connected. only connection is that a LOT OF PEOPLE WITH LUPUS HAVE THE LUPUS ANTICOAGULANT BLOOD CLOTTING DISORDER. BUT THERE ARE LOTS OF PEOPLE WITH LUPUS ANTICOAGULANT BLOOD DISORDER THAT DO NOT HAVE LUPUS.

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