lupus anticoagulant syndrome symptoms

Some people have no symptoms at all. Others get a rash across there knees and wrists that looks like corned beef. Others get terrible migraines. Some say that they get mental fog where they have difficulty remembering things or substitute the wrong words. Check out the Hughes Syndrome website or the Antiphilosphid Syndrome website..they provide a FAQ list that is helpful.

Hello there yuri1022,

First of all I am so sorry that your daughter has been diagnosed with lupus anticoagulant syndrome. SinceChristina38 has already gave you the basic info about the symptoms I don’t want to repeat her words so I would just like to add that if your daughter has been proven to have this syndrome at least twice than she is good candidate for treatment with anticoagulants. Of course this is something that your doctor is going to explain to you in more details. Basically she will need to be observed and later in her life she will need to take care of herself a little bit better.

I hope that this was helpful. Good luck.

 

I am beside myself with fear. My daughter almost died in November from pulmonary embolisms. She has recently been diagnosed with lupus anticoagulant syndrome. She is 19 and very responsible and taking control of her health. She has been in the emergency room a few times since. Doctors thought things were in control so she went to visit grandparents in Florida and had to come home early. She went to emergency room and found her blood was to thick. Ate a bit to many asparagus. Then she was bleeding from the urinary track ended up in the hospital again. They said it was a UTI put her on inter-venous antibiotic even though she questioned the nurse of the safety of mixing it with her coumadin. Nurse said she didn't think it was an issue. Bleeding got to the point where she was peeing almost pure blood. Her hemotologist advised she get back home to be monitored individually instead of a huge Florida Hospital where your a number. Isn't florida cumadin capitol with the elderly and should be well versed better then a 19 year old who was brave enough to question the medical profession? Then when she comes home her blood is now to thick again. I guess it's a wake up call that just because the initial near death incident is over we can't forget this is life long. This is so uncommon for a 19 year old. We live in a small state so they had to put her in the geriatic ward as they had not delt with this type of crisis with someone so young. And this is the Biggest hospital in our state. I don't let it consume me but reality is this can be deadly within a day constantly fighting either a clotting incident or a bleeding. I can't do my usual bury my head in the sand and it'll go away. I have always thought myself and children were invincible so this is a new reality for me and I don't know how to deal with it.

Hi Besidemyself: (My post is informational only, do not take it over Doctor Advice) I am also a lupus anticoag patient diagnosed three years ago, I am in my forties though. It seems there is some missing info regarding interaction with coumadin/warfarin. Your daughter is young but uninformed by her medical staff and yes she is right about antibiotic interaction. I would highly recommend an oncologist to take charge of her care and I suggest requesting a weekly at home prothrombin test machine (travel size). She would be trained by a professional on how to take her blood (like a diabetic, a finger prick) and then use the machine to check her level. This is most useful when wanting to eat greens or drink cranberry juice or most especially being put on antibiotic therapy or traveling. For example, I have found Augmentin does not raise my INR level (blood thinness) but Biaxin does. I call in my test results to a call center and they report it to my Dr. I am seen every six months for evaluation and if my level falls too low he will see me in office or call me to regulate may meds. The first thing I was told was to stay away from green leafy veggies and cranberry juice, but omega's (fish oils) can up the blood thinness too (my mistake with this one put me over 6.0) as well as tofu (soy based foods) . Vita K will assist the clotting process so that is why green leafy veggies are a problem. They cause the blood to thicken and clots are more likely. If she is bleeding uncontrollably Vit. K is a good idea. I keep a low dose supply on hand for bleeders. I have a spot on my right upper thigh that likes to give me a problem every so often. But I am VERY VERY CAREFULl what I eat and even how much. If I have a UTI I will add an ounce or two of cranberry juice at night to acidify my kidneys but I watch my INR closely as well as with any antibiotic therapy. I report my levels immediately and my Dr even gave me his cell number, which I have texted him once over a weekend, when my INR was over 4.0 (That is not a GPA, darn) lol Also, whenever she is traveling she NEEDS to use pressure stockings under her jeans to keep blood from pooling in her legs and protect her from clots, in cars, trains or planes. She needs to get up and move around every 2 to 3 hours when traveling. Lots of water too. One last thing, vitamins (like D, or a multiple) can interact as well. It's an annoying disorder but the risks without medication are too high not to be informed and careful. It's a lot like diabetes, be educated, eat well, watch your levels, and go on with life. Hope these suggestions are helpful and educational. Please do NOT take any of my suggestions over doctor advice. This is for informational purposes only, the Doctor rules here. It's too risky to go off on your own with this disorder. Get educated and work with the Dr. closely and your daughter will live a long healthy life.

Hi Besidemyself: (My post is informational only, do not take it over Doctor Advice)

I am also a lupus anticoag patient diagnosed three years ago, I am in my forties though. It seems there is some missing info regarding interaction with coumadin/warfarin.

Your daughter is young but uninformed by her medical staff and yes she is right about antibiotic interaction. I would highly recommend an oncologist to take charge of her care and I suggest requesting a weekly at home prothrombin test machine (travel size). She would be trained by a professional on how to take her blood (like a diabetic, a finger prick) and then use the machine to check her level. This is most useful when wanting to eat greens or drink cranberry juice or most especially being put on antibiotic therapy or traveling. For example, I have found Augmentin does not raise my INR level (blood thinness) but Biaxin does. I call in my test results to a call center and they report it to my Dr. I am seen every six months for evaluation and if my level falls too low he will see me in office or call me to regulate may meds.

The first thing I was told was to stay away from green leafy veggies and cranberry juice, but omega's (fish oils) can up the blood thinness too (my mistake with this one put me over 6.0) as well as tofu (soy based foods) . Vita K will assist the clotting process so that is why green leafy veggies are a problem. They cause the blood to thicken and clots are more likely. If she is bleeding uncontrollably Vit. K is a good idea. I keep a low dose supply on hand for bleeders. I have a spot on my right upper thigh that likes to give me a problem every so often. But I am VERY VERY CAREFULl what I eat and even how much. If I have a UTI I will add an ounce or two of cranberry juice at night to acidify my kidneys but I watch my INR closely as well as with any antibiotic therapy. I report my levels immediately and my Dr even gave me his cell number, which I have texted him once over a weekend, when my INR was over 4.0 (That is not a GPA, darn) lol

Also, whenever she is traveling she NEEDS to use pressure stockings under her jeans to keep blood from pooling in her legs and protect her from clots, in cars, trains or planes. She needs to get up and move around every 2 to 3 hours when traveling. Lots of water too. One last thing, vitamins (like D, or a multiple) can interact as well. It's an annoying disorder but the risks without medication are too high not to be informed and careful. It's a lot like diabetes, be educated, eat well, watch your levels, and go on with life.

Hope these suggestions are helpful and educational. Please do NOT take any of my suggestions over doctor advice. This is for informational purposes only, the Doctor rules here. It's too risky to go off on your own with this disorder. Get educated and work with the Dr. closely and your daughter will live a long healthy life.

Oh, Lupus anticoag does have a hereditary component, parents should be tested to see which side of the family needs care and your daughter's children too. When her children are in their early 20's they need to be tested. I asked about earlier and the doctor told me children do not have this problem, but adulthood is an issue, to have mine checked in their early 20's.

By the way, you are blessed that it was caught so early in her life. I was walking around for years with this disorder and was unchecked, until a septic staph infection and some atypical symptoms put my infectious disease dr on the hunt. I was two hours away from an 8 hour plane ride when I went into (non painful) convulsing spasms fully alert. I was forced into the hospital for a week and put on intravenous antibiotic therapy and subsequently put on warfarin to clear the clots they found in my pulmonary artery and peripheral arteries near the pulmonary. I am blessed that I am alive and have seen my oldest son graduate to move on to college and to see my other two children grow into lovely young ladies with bright futures.

God bless you and your family with educated caregivers and careful diligence in overseeing her condition.

My granddaughter, age 3, was diagnosed with lupus anticoagulant syndrome when she had her pre-op appointment for tubes to be put in her ears.  They sent her to a specialist and he did all the testing.  My little angel was born almost 3 months pre-mature.  She has had a rough start.  She has to wear glasses due to a disorder with her eyes and I'm wondering if all this is due to her being pre-mature.  Can someone with more knowledge on this syndrome give me some insight please.  I would really appreciate any information you can share.

 

Hello besidemyself! I also have Lupus Anticoagulant and I am in my 40's. I had ankle surgery, then was in the hospital for a week with what my Dr's thought was Pnuemonia, while being discharged I told the hospitalist I didnt feel well enough to go home, yet home I went. During the next 3 days my family dr, kept trying to make me feel better to no avail! I went to the Er at our local hospital on the 4th day, I am so blessed that a local college had a bad case of food poisening, therefore after I was Diagnosed as needing Oxygen I sat there for 12 more hours NO LIE! Then my angel come on shift, and came in my room and told me she thought I had blood clots, sent me right away to the CT scan, and my lungs were full of clots; I was in the ICU for a while, and of course it was thought that my surgery caused the Blood Clots, Thankfully, I had gotten a wonderful lung dr, and rhumetologist, that did the pit Viper test, that came back positive. I just happened to be back in the hospital with Pnuemoniua again, and I was told dont leave stay until we can move you to a larger hospital! Anyhow, I was DX with Lupus Anticoagulant, and I am thankful I was told what not to eat and what to look for. I am currently on Coumadin, and I have never been at a good level. In August last year I noticed that I had severe pain in my leg and ankle and couldnt walk. I had a woman that was bringing me my own meter, she met me at my Dr;s office, when I did my INR, it was 8+, the meter does not go any higher, I was taken to the hospital, and vitamin K was administered, along with pain meds, as it was very painful. The vitamin K did not work and then I was given several units of Fresh Frozen Plasma. I was there for a while, but am fine now. You need to read on the internet what you can do, that is what I have done! Good Luck!

Hi my 9 year old daughter was referred to a hemotolgist/oncologist for having a elevated ptt for several months.she has now over a period of 5months tested positive for lupus anticogulant aling with elevated platelets low moncongete% and a few other issues.we just did one more set of testing and i wont know the results until may 2.i have been reading up on some signs of disorders this is associated with and she quite frequently gets uti,strep throat,unexplained fevers with rash on cheeks and nose,as well as rash on cheeks and nose when in sunlight for a short period,she also has asthma that only flares on occasion and she becomes short of breathe,she is underweight and under height for her age and she has been put onmedicine to gain weight also her maternal grandmother had kidney failure and developed lupus as well as her paternal great grandmother who also had kidney failure and developed lupus.however my daughter rarely has trouble bleeding alot it is quite the opposite.she does bruise easly and get fatigued easly with joint pain in her knes and ankles as well as she had surgery to repair trigger finger 2years ago.sorry bout the long story just trying to make sure all the facts are there.my question is does this sound more like the syndrome yall are speaking of or lupus?her dr hasan acient wich makes it very hard to understand all he is telling me.i am worried sick and the waiting is killing me any help would be greatly appreciated.thank u

My daughter was diagnosed with LAS in 1992. She had many episodes of uncontrollable bleeding, before she was diagnosed. In 1992, she started complaining with chest pains and her right leg hurting. They found 4 bloods clots in the right lower quadrant of her lung. She also had a DVT in the right leg. She underwent many test and once she was diagnosed hospital and doctor visits were a full time job. I am the carrier of this disease. My daughter is no longer with me...she passed away 2001.

I also had a near fetal embolism. Blood clot in leg. It broke into pieces , went to other leg, both lungs and the bulk into the center of my heart. After open heart surgery to remove it I remain on Coumadin. 12mg daily. This happened 12 yrs ago. I monitor 1 to 2 times a month. She really needs to watch eating certain things. All dark green and leafy veggies. ( broccoli, turnips, collards, asparagus, etc. Tuna. And salads. No muti vitamins, or any vitamins without consulting her doctors. Anything that contains vitamin K and sometimes potassium can effect mine , like bananas. Watch out when using antibiotics, they mess with it bad. I wish her
luck. It's been a long and learning journey for
me.

for younger patients females sexually active it is very important not to be on contraceptive pill as it increases the risk of DVT

My daughter who will be 21 and just diagnosed with lupus anticoagulant and also vasculitis....i dont even know where to start...we still have more testing to do yet. She has migraines daily and sick sinus syndrome runs in her fathers side of the family....

I'm 70 years old and diagnosed 8 months ago with lupus anticoagulant syndrome. Mine has been well controlled with Xarelto. At least so far. I do know in studying the syndrome is that your daughter will need a lot of monitoring when she decides to start a family. Hope this helps.