Lupus Anticoagulant

I have Lupus Anticoagulant but not Lupus,is it possible to develop Lupus because of this,what tests are done to determine if you have Lupus?

[karajo]

Hi and welcome to the Lupus MedHelp Forum.  

I'm not sure the answer to your question.  I read up on it before responding to your question.  Maybe someone who is more familiar can better answer your question.  But I do know that lupus is not dx by a test.  It is a series of test along with specific symptoms.  There are 11 criteria for a lupus dx.  One must have at least 4 of the 11.  And then there are so many test and they are all expensive.  These test include: ANA, anti-DNA, anti-Sm, sed rate, CRP, Comp 3 and 4, anti Ro, anti-La, anti-RNP, sometimes leukocytes, platelets and neutrophils are off.  

Are you having severe symptoms?

Hope this answers some of your questions.

[shev94]

I don't lupus i have the lupus anticoagulant,thanks for the info but I want to know if i can still clot when my inrs are up and down and if I need to be on anymore meds

[karajo]

I don't know the answer to your question.  

I would suggest you re post your question and put something like - Can my blood still clot when my inrs (maybe write this out so it is really clear) are up and down?

Sometimes terms are only familiar to the ones who have had an illness for a long time.  This is not a term I'm familiar with.

Hope this helps.

[sk8flo]

There are a small percentage of otherwise healthy people who have the antiphospholipid syndrome.  There are specific tests for the APS which can be seen in people with RA, scleroderma and other forms of vasculitis, and some infectious diseases, particularly AIDS are associated with these antibodies and never cause clotting problems.

Without knowing what other tests you have had done, it is hard for us to comment.  Except in unusual circumstances, the presence of lupus anticoagulant is associated with the formation of blood clots rather than increased bleeding.

You also didn't share what meds you are on and why your INR is being monitored.  There have been reports of pharmacies substituting generic forms of coumadin that have altered the INR results....their docs need to be informed and Rx written very specific.  There are also many OTC herbs and combinations that people take without realizing their impact on bleeding.

If you would like to share more information I'm sure we can try to be of more help to answer your question.  Hope to hear back from you.

[shev94]

thankyou so much for all your comments and help. I am on coumadin for life because I was diagnosed with Lupus anti-coagulant after the birth of my first child 9 years ago,I had clots that extended all the way up my left femoral vein through the renals and to the ivc. I was heprinized for 6 weeks and after put on coumadin,six months after this I was retested for the lupus anti-coagulant and it was positive.I was taken off of coumadin within this time and in 2 weeks I had pulmonary embolism,since then I've been on coumadin. I have alot of symptoms now that include,fatigue,severe muscle cramping at nights,unexplained fevers,stomach cramps,my feet get so cold that I can't feel them and I have nausea alot. I was told that these could be effects of coumadin and then I  was told that coumadin does'nt do this, There is no other diagnoses of anything other than the LA. I wanted to know if i can still clot while on coumadin because my inrs are always inconsistant,1 doctor I saw said it was because my blood is difficult to get theraputic which they say should be between 3-4,I get confused sometimes with all these symptoms and information,I'm still trying to understand,I apologize for the lack of info etc. in my previous posts.

[sk8flo]

As you may have read here and elsewhere, diagnosing lupus can be very difficult as lab tests can wax and wane (negative/positive) over time (years even!)

You obviously have a serious condition.  I would think that finding the right rheumatologist who will work closely with a hematologist, both of whom are very knowledgeable about antiphospholipid syndrome (some now call it Hughes syndrome), is of upmost importance. Pregnancy and birth is a time when this condition is frequently picked up.

I've never read/heard about anyone having your current symptoms as being caused by coumadin per se.  You may now be showing some signs of other lupus related autoimmune processes (several overlap) or systemic lupus effects., vasculitis, etc.

You might want to contact the lupus foundation (local or national) for recommendations for rheumatologists in your location that have a specialty in this condition.  For further personal information I would recommend you try to find the 2009 edition of Dr. Wallace's book as he devotes a whole chapter to this issue.  It does talk about specific tests that might be warranted in your case.

My nephrew's fiance several years ago developed clots throughout her body, was in ICU for weeks, and while tested for everything imaginable, the only thing they could come up with was a reaction to BCPs.  Ironically she and another woman on a long plane ride developed the same syndrome within 24 hours of each other.  Sometimes the exact cause is illusive.

Are you on basic coumadin or Lovenox?  I do hope you find the right physicians to monitor this for you.  As a new patient I can only express how greatful I am to my new Rheumy and how they have all their specialty lab work done by the Mayo clinic (they have regional lab centers - I am in CT) for consistency.  There is a big variation in labs, their equipment, and their lab techs.

I hope this post has been of some help to you.

[shev94]

thankyou so much for this information,for taking the time to respond to my posts it surely is very helpful. I am on coumadin alone,10 mg a day, my doctors mainly concentrate on my blood clotting from having LA,they said I have to deal with these symptoms,I am having trouble coping with it,the pain is terrible at nights,yesterday I was prescribed quinine sulfate for the cramping,sometimes when I describe these symptoms it feel's as though they feel I am a mental patient instead,I've been trying hard to find the right help,I feel totally lost.I have 2 pretty active boys and I need to keep up with them. I travelled in July and the cramps seem to have worsened since that time.

[sk8flo]

I am so sorry to hear your complaints are not being addressed.  You have the right to be treated as a whole person!  You have the right to have your pain issues treated!  Being told "deal with it" is just not acceptable in my book and is a red flag.

While I know this may be difficult with an active family, but perhaps it is time to get all your records together and seek another pair of eyes, a second opinion. Sometimes a major medical center can offer more options.  Specialists do have tunnel vision.  Do you have a PCP that can help you?

The nighttime leg symptoms can come from a variety of causes, including just a simple fact of dehydration that we don't recognize.  Summer is the worse time for me, also I am a mouth breather, and my PCP recommended trying Magnesium Oxide 400 mg at bedtime.  This helped a lot as I would wake up with my lower legs in spasm and contortions and severe pain.  Ironically, this is the same medication and dosage that is in the pill form of Phillips Milk of Magnesia :)  The Rx was cheaper!

Keep us posted!  We are here for you.

[shev94]

when I had blood clots after my pregnancy they told me it was post-partum depression even though I presented with my left leg 2 times it's normal size red and in tremendous pain in my back,stomach and chest-I was left to wait for 6 hours before being treated and at that time,a male doc told me,i know how it must be just having a baby and all go home and consult a councellor-2 weeks after I was fighting for my life-so I don't have alot of trust in doctors becasue as i am difficult to diagnose they think it's psychological so I get scared of being pushed away because of my history with them so I deal with things mostly on my own.I monitor my own inrs and handle it on my own because I don't like the feeling of being patronized.I know they are human too and I am not knocking all,just a couple..lol.
I still would like to know if it's possible to clot while on coumadin. Thankyou so much for the support,it sure means alot.

[sk8flo]

Please realize that we here are just average people, not medical specialists.  Many of us have had bad experiences with medical people.......yet there are some really great ones.  It is not unusual for lupus and other autoimmune people to see 2-5 different rheumies till they make a good, caring relationship.  And yes, we women are still the bane of male doctors who chaulk everything up to being female......

I just did a PubMed search to see if I might find some information about the coumadin and potential to clot.  While no specific answer came up, I did learn that there is a very small percentage (0.01%) of people who are considered warfarin resistant, and this is due to a genetic abnormality.  The other interesting thing that I learned is that there are some people who have varying INRs due to malaborption issues due to the interaction of oral anticoagulants with drugs and food.  Here are some highlights:

Crohn's disease - patient required IV warfarin for control, was resistant to oral anticoagulants and unable to receive subcutaneous low-molecular-weight heparin due to adverse effects.
Malaborption can be proven by giving IV warfarin and following INRs.  If IV keeps them stable, then a cause of malaborption should be investigated.
Drugs, herbs and multivitamin suppliments can alter the absorption, pharmacokinetics and pharmakodynamics of oral anticoagulants (OAC therapy.)  NSAIDs, dietary intake of vitamin K, fever , diarrhea, alcohol abuse of physical hyperactivity, thyroid or hepatic (liver) dysfunction have all be implimented.

I hear your discouragement, I really do.  But I am curious, how are you personally monitoring your INRs?  

You also must consider that you have children that you want to see grow up.....perhaps you can use that as your incentive to seek another opinion for better control of your lupus anticoagulant and to address your new symptoms.

Have to considered posting on some other boards, for blood disorders?  I wish you only the very best!

[abby10]

Hi,
I got your answer to my old post and I have found you here. I'm sorry about your experience with the medical proffesion. Some (bad) doctors seem to have been trained to treat women this way.

I get numb hands and feet and they are VERY cold. People don't want to hold my hands, they are that cold. I can't pick up my Grandson's hampster...lol. the bottom of my calves and ankles and feet get very swollen, sore and itch. But doctor's never do anything because I have no edema. Soooooo the mistery continues.

As I wrote to you I have LA, and am banking the next test will be negative.

abby

[shev94]

wow,thankyou so much for this info,I never knew there were malabsorbtion issues,I will definately look into this. I monitor my own inrs by going to a lab and getting my results and increase or decrease as i need to-this is how the doctors handled it so i do this on my own. The last 2 specialists I saw flat out told me that they are not equiped to handle my case in an emergancy so I turned to the internet for better info and help to do it on my own.I no longer live in North America and the country I live in has a terrible medical system.The other meds I'm on is quinine sulfate 300mg before bedtime and i don't know if it is coincidence but the last 3 nights I had no cramping so hopefully this is working.
Thanks again for all your insight and for your time you take to get all this info for me.

[sk8flo]

shev - I am going to send you a pm shortly......let me know if you never receive it.

[shev94]

lately I have been gaining weight,my exercise and diet remain the same,yet there is unexplainable weight gain which is depressing me,is there a possibility that coumadin causes weight gain?

[SickMomma_PDX]

Just wanted to chime in that you seem to have AntiPhospholipid Syndrome (APS). Not everyone with LA or ACL (or both) develops APS but with your history of blood clots, you probably have it.

I recommend you do a google search for APS Foundation of America. Interestingly, APS itself can cause many of the symptoms you've got, and that group might be able to help you find a doc who has more experience with APS and will treat more than just your clotting.

Good luck!!

[shev94]

thanks for the info,at this point I'm so confused.I'll look it up for sure

[PiperW]

I have a little insight on this. I have Lupus (plus some other auto-immune thingys) and my husband is "a clotter" - that's his diagnosis - and is on Coumadin the rest of his life and except for the childbirth, has a story very similar to yours.

He has various health problems all the time and I wonder sometimes if he does in fact have Lupus. They do extensive bloodwork on him 2x/yr and none of the Lupus test ever come back positivie so I guess not. If they said he DID have it, I would not be shocked.

Best I can tell Coumadin is a beast of a medication. Yes he gains weight, he doesn't sleep well anymore, and has constant leg pain (he's only 46 and very athletic). They told him his leg pain (not exactly cramps as you describe) is because those clots were in his legs SO long that the valves that push the blood back up against gravity are permanently damaged. This is a problem he will have forever. I wonder too if he has Restless Leg Syndrome. You may too. Read about and see what you think.

As for your question about can you clot on Coumadin. We ask the doctors this everytime he has to fly somewhere and they assure us that if the INR is above 2.7, there is no way he can make a clot. Bleed-to-death, yes, but clot, no. He has to take 15mg to stay in that range, which is a huge amount. Also be sure to drink lots of water and walk around whenever you have long drives or flight. If you drink coffee or soda, drink an extra glass of water to offset the drying affect caffine creates.

The coumadin diet is also a recipe for weight gain  When you avoid vitamin K he would replace that void with starchy foods that make him gain weight. Plus avoiding vegetables isn't exactly healthy! But we have a pharmacist friend who gave us this advice; eat your vegetables but eat a constant amount daily, don't skip a day or eat double the amount on another day. It will make your blood a little thicker but then adjust your Coumadin. I think that's why he takes such a high dose. Plus we grow a lot of our own vegetables and the vitamin content is very high compared to store bought. He is still gaining weight. He went off of Coumadin for a while like you, and he almost died BUT he did lose weight. I guess I'd rather have him a little overweight (20lbs or so) than DEAD! But I would say the coumadin or the vitamin K diet is to blame.

I have the cold hands big time. Feet too. They get so cold they HURT! Sometimes I have ONE cold hand. Freaks doctors out. Lupus is just weird that way I guess. It's possible you could have Lupus. Anyone could have it. I don't think one condition causes the other necessarily but I don't see why you couldn't have both. I have 5 different conditions! I think once you have one auto-immune condition, it's not unlikely to have another.

I hope this helps and I hope you start feeling better.

[cindylu4you]

I was just reading this post. I too have LA with Factor IV Leiden and a thing called May Thurner's syndrome.  The clot you described is something that is typical with people who have May Thurner's syndrome. Clot in left leg from pelvis to ankle.  You should see a vascular surgeon to check that out. The cramps are something I experienced with clots so you probably still have clot in your leg.  Ask doctor to order a doppler ultrasound on you.  
My hematologist did tell me that people with LA don't necessarily have Lupus and she did say that people can still clot while on coumadin But it's not likely.Just stay in your INR range & your chances are unlikely.