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What does "Lupus like anticoagulant" mean?
Started by Sarah
Posted: July 10, 2008 at 19:28
In my discharge summary it states that I have Extensive DVT on S/P thrombolytics S/P IVC filter and stent placemnets......
"There is a Lupus like anticoagulant present"

What does that mean? That I have Lupus also? I see a hematologist on Aug 5th. But until then this will drive me crazy. If anyone could comment that would be great. Thanks.

I am 27 and was hospitalized with a blood clot in my leg leg that started at my ankle and went to my kidney. They told me there was something in my blood that causes it to clot and I will be on Warfarin for the rest of my life. I still have the IVC filter stuck inside me. They could not take it out. It embedded itself in my tissue or something. They did mention Cancer to my husband at one time early on, but I never heard nothing about that or about Lupus.
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Re: What does
Reply #1 by dero
Posted: July 10, 2008 at 20:42
http://lifeafterdvt.forumotion.com/what-is-antiphospholipid-syndrome-or-lupus-anticoagulant-f19/antiphospholipid-syndrom-or-lupus-anticcoagulant-t20.htm

Hope this helps...
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Re: What does
Reply #2 by Faye
Posted: July 11, 2008
Hi Sarah,
Just guessing but they may have mentioned cancer to your husband for the same reason as they mentioned it to me. I am 30 and was diagnosed with IVC, renal (both sides!) and deep vein thrombosis in a variety of other veins! Big legs, couldn't walk etc etc. They speculated cancer briefly because it can be a cause of thrombosis in the other wise young and well, like me and presumably you too. Also they may have queried a tumour pressing on the IVC which then caused thrombosis - another thing queried with me, ruled out through CT and MRI. And I have no other symptoms that point to cancer. I am also on warfarin for the rest of my life. Its all very scary isn't it? I know what you mean by driving you crazy, you turn things over and over again in your mind, what does that mean, what does this mean, what will it mean in the future!

Please feel free to talk about everything on this message string and the others, it really can help. I have clots in both legs that go to my kidneys so I imagine our symptoms etc might be similar. I was otherwise fit and well. Hope you and your husband are OK, it can be very shaking all this DVT stuff, myself and my fiance are (4 months on) just getting back to normal.
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Re: What does
Reply #3 by Sharon
Posted: July 11, 2008 at 02:58
Sarah--

There are 3 of us now (Kelly is the other) on this forum that have confirmed APS--antiphospholipid syndrome, aka lupus anticoagulant, aka Hughes Syndrome. All the same thing w/ different names. It is also called 'sticky blood syndrome'. I will put some links to some very good articles below, but the good news is that this does NOT mean you have lupus. People with lupus have elevated antiphospholipids, lupus anticoagulant and anticardiolipids, but people with any of these elevated in their blood do not necessarily have lupus and in fact, few do have it. I do not, but also had the high lupus anticoagulant. These levels also go up and down, and you really are supposed to have 2 tests in a row turn out positive within 12 weeks, AND have any or all of the clinical symptoms in your history to get the diagnosis.

APS is one of the primary reasons for young people having DVT and babies less than a year old have been identified w/ APS. I had no idea I had it until last year--at 49 y/o. Every health problem I have had in my life--with the exception of a snake bite, horseback-riding, car and motorcycle accidents have been due to APS or the other clotting disorder I have--Factor V Leiden--FVL.

Do you have migraines? That is one of the hallmarks of this. I will let you read the articles and then we can talk some more. Try not to get too scared--although I know I say that in vain... There is almost no way around it, but w/ anticoagulants, you can have a very good outcome. Are you taking Warfarin or staying on shots? If you are taking Warfarin or Coumadin--same thing, your INR should be kept between 3 and 4 with APS according to the literature. You also have a bit of a risk for being resistant to warfarin--I am. That is why I take Arixtra shots, bcs I reclotted 4 times thru heparin, Lovenox and coumadin while I was in a hypercoagulable state. Are you in one now? Have they been doing routine D-dimer tests to see if you are still actively clotting? Are you home or in the hospital, hon? I can't tell you how I wish you did not have to think about DVT at your age.

Are you saying that they can never take your IVC out? Does it have any clot in it? I will pray for you and feel free to ask questions as Faye says. We are here to support each other. You are my son's age. I had this when I was young, but didn't know. I'm not sure if it better to know or not. I guess it depends on the circumstance. I wish I had known when I was pregnant and could have taken heparin shots to prevent my miscarriages, but I am glad I didn't know at other times, bcs I would not have been able to ride my horses as long as I did. I hope you use the knowledge to make you stronger and to take the precautions you need to take to have a healthy and happy life. This is serious, but can be controlled. I lean away from warfarin w/ this disorder however, even tho nobody likes shots--they can keep us much more stable. Stable is what you want when you have clotting tendencies. Take care, hon, and may the Lord bless and keep you at peace.
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Re: What does
Reply #4 by Sharon
Posted: July 11, 2008 at 03:12
Woops, forgot to add the links:

APS Foundation: http://www.apsfa.org/aps.htm#5

A very good, but technical eMedicine Article:
http://www.emedicine.com/MED/topic2923.htm

This one is a collection of articles about APS:
http://www.antiphospholipid.net/clin.html

Some of the articles in the above are not still accessible, but enough of them are to make this a very valuable education on APS. I expect this will keep you busy for quite awhile. Remember to come up for air sweetheart--we can only absorb so much at a time.

I have a thread on APS that lists the symptoms as well.
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Re: What does
Reply #5 by Sarah
Posted: July 14, 2008 at 03:56
Thank you for all of the answers thus far. About the IVC filter. Yes it is there for life. At first I loved the thought that I had this extra precaution inside of me. The night I was admitted to the hospital is the night they put it in and by morning it was full of clots. So I was EXTREMELY close to death. I had been misdiagnosed several times and was in pain for about a month before they finally caught on. Anyway back to the filter. After I got out of the hospital they told me to come back in a month and if the filter was empty they would take it out. I was really scared and what not and asked them to just keep it in. The man in radiology told me that was too dangerous because it is flimsy metal and a piece could break loose and do more damage then a clot. He also said it was a 20 min procedure and a walk in the park. Well 3 hours later they I could tell there was a problem although no one would tell me. A few more hours I woke up in recovery and my husband said that they could not take it out it was embedded in my tissue and it is too risky to take out. But maybe a doc at the Mayo clinic could. (I live in Minnesota) Anyway they also told him I could no longer have children because if I were pregnant eventually my organs would push everything up and cause problems with the filter. So as of now its there and its not coming out because I just don't trust someone to try even if they were willing.
I will be reading all of the links. THANK YOU VERY MUCH Dero, Faye, and Sharon.

"Does anyone else have problems with the security numbers below???"
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Re: What does
Reply #6 by Sharon
Posted: July 14, 2008 at 07:33
Sarah--

I am sorry fo ryour suffering. I know you must be very disappointed about not having children. I had trouble becoming pregnant from the APS and know how disappointing that is to go thru.

I have also had an IVC filter and know exactly how you felt about the initial felling of security, but then you begin to learn about the risks and it presents another set of issues. Hopefully, if the docs can't get it out, you don't have to worry about it migraiting to your heart. I have not heard of peices breaking off, in fact, most of these are made to be left for life if the need warrants. I did get mine out, but felt exposed for several weeks and worried if I'd done the right thing. This DVT stuff throws us all for a loop, that's for sure. Tae care. And yes, we all have trouble w/ the numbers. I think it is programmed to do that periodically to prevent spammers from getting to us.
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Re: What does
Reply #7 by Faye
Posted: July 14, 2008 at 09:25
Yes I have trouble with the security numbers but it always gets there in the end!

Sarah my goodness. What a tough hand you have been dealt. I haven't had an IVC filter, but I was told very mixed messages about having children and asked my fantastic consultant to refer me to a gynae/obs consultant for which I have my apt on 5th Aug (same date as you! Bizarre.) and we will discuss everything then.

My consultant physician (who I totally trust, he is also happy to look to other people for answers, so intelligent but humble too!) seems to think it is possible to have babies and that the anti coag meds will be the major problems, which are easy enough to solve, swap and change through the months. I was also worried about the physiology of it all, where the baby grows in relation to the IVC etc.

How are you symptomatically anyway? How does this affect your daily living? I hope you don't feel like you are missing out on things. I did at first but it got better.

Sharon your story and info is also very interesting. This whole experience of DVT especially at a young age has made me reevaluate everything. You assume certain paths in life will be open to you. In the Western world we have achieved so much stability (yes appreciate thats not for everyone) where we get up, go to work, don't fear of getting shot for our beliefs, don't ride behind tanks on the school bus, don't have to queue for bread, don't expect to die in childbirth etc etc. Then something like this happens and at once you are reminded of how fragile everything is...eventually that gives you strength. That sounds weird doesn't it?! But I feel now that life has tried hard to rock me and I am still here. There are many who have not experienced that yet so when they look at the sun in the morning they don't even register. We think "Blimey, thats beautiful" cos we remember worrying that we might never see it again! Sounds dramatic. But its how I feel.

Let me know how you are getting on with swelling, mobilising and so on.

Have a good day where good things happen. They always do, if we're looking at them like that.
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Re: What does
Reply #8 by Sarah
Posted: July 18, 2008 at 03:28
Faye,
Well not being able to have more children is a real bummer. It is not the end of the world because I already have 2 beautiful sons. We were hoping to have more but as soon as my husband heard that a pregnancy could cause more problems he ran and got a vasectomy since I could no longer use birth control. I am dealing with it though and I think I will be alright.

The thing that angers me most about all of this as that I went into it with virtually no knowledge of DVT and everything that came along with it. I remember waking up in recovery in a lot of pain and asking for meds. The nurse told me to go home and take Ibruprofren. I had to sit and argue with this lady about it interfering with my Warfarin for a good 20 minutes before I just gave up and left. I feel like I can not even trust the doctors because they misdiagnosed me and even now I have to babysit everything they tell me and go back home and research it online to make sure everything is really ok. It really scares me.

As far as swelling and mobilising, my legs still hurt every night and even some days. The left leg that had the clot is still larger then the right. The docs told me I could go back to work but if I am standing more then 20 minutes they swell up. I know you are suppose to walk around and move every so often so I try but that brings on discomfort also. Now I stay home with my 1 year old. Some days my legs feel so crampy and tight that I wonder if my veins are too small. It feels like they are being stretched to their limit. I know that is probably not the case. But that is the sensation I feel. When I walk or bend my legs something inside feels tight and like I am pulling it. I dunno. Hopefully the hematologist will have all of the answers I am looking for. Good luck on the 5th.
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Re: What does
Reply #9 by Feelgood
Posted: July 18, 2008 at 05:12
Antiphospholipid Antibody Syndrome

http://www.youtube.com/watch?v=8c_Dxf8kDAE
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Re: What does
Reply #10 by Faye
Posted: July 18, 2008 at 23:48
Hi Sarah

Sounds like your body needs time and rest to recover. I presume you elevate your legs when sitting - higher than your waist is ideal. You were right to argue the case about the brufen. With light exercise such as walking and swimming your body should develop collateral veins that will take some of the strain that the deep veins can no longer manage. And in time your clots should lyse (break down) somewhat. Swimming is ideal as you have the support of the water and your body is horizontal so you are not having to fight gravity to return the blood back up to your heart through those blocked, narrowed veins. Sounds to me like your muscles are tight. Have you had any physiotherapy input??

I will be interested to hear what your haematologist says. You sound like a strong lady I am sure you will come to terms with everything but do give yourself as much time as you can!! Move a bit, rest a bit, move a bit, rest a bit. You get the idea!! Too much of either will be hard on your body. It will get better.
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Re: What does
Reply #11 by Tara 2012
Posted: May 9, 2012 at 01:28
Hello All,

Wrong Sharon there's four of us. :) As of today I had my normal doctor visit,
received information from Doctot I tested postive for Lupus. I had to retake blood
test again to be on the safe side.
This is too frustrating every week it's like I have something new to show up. Two
weeks ago I found a lump in my breast,thankfully it was benign, now this!
I had a clot in 1999 after having my daughter, March 17th I slipped and fail on
done liquid detergent in the grocery store three days later calf was red, swollen
and painful. Dr discovered clot in calf.
Every since this second onset I've had lost of hair, dizzyness,constant pain,
weak. Etc
Wow! I'm glad I have faith because if I hadn't not sure how all this would affect me
Also I've been making contact talking to people trying to organize and make
people aware of DVT/PE I mean this is serious. People need to know, and we need
support groups.

When I was at my lowest I found this forum,reading and commenting to you all
has really helped me :)
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Re: What does
Reply #12 by Tara 2012
Posted: May 9, 2012 at 01:29
Hello All,

Wrong Sharon there's four of us. :) As of today I had my normal doctor visit,
received information from Doctot I tested postive for Lupus. I had to retake blood
test again to be on the safe side.
This is too frustrating every week it's like I have something new to show up. Two
weeks ago I found a lump in my breast,thankfully it was benign, now this!
I had a clot in 1999 after having my daughter, March 17th I slipped and fail on
done liquid detergent in the grocery store three days later calf was red, swollen
and painful. Dr discovered clot in calf.
Every since this second onset I've had lost of hair, dizzyness,constant pain,
weak. Etc
Wow! I'm glad I have faith because if I hadn't not sure how all this would affect me
Also I've been making contact talking to people trying to organize and make
people aware of DVT/PE I mean this is serious. People need to know, and we need
support groups.

When I was at my lowest I found this forum,reading and commenting to you all
has really helped me :)
24846
Re: What does
Reply #13 by Maryann
Posted: June 19, 2012 at 17:12
Hello to All.

I had the same problem as Sarah. we both in the same situation
until now I do worried a lot of time and cant sleep good.

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