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Discussion:
Lupus Anticoagulant
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Hi, please I need to know what kind of effects lupus anticoagulants that you have.It will help me to know if you stay sore or nausea or etc.

Thank you
Posted on 08/28/09, 09:39 am
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Email me when others reply to this topic help
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Reply #1 - 08/28/09  11:17am
" Hi,
I suffer from primary APS which is an auto-immune disease very similar to lupus but also causes clotting episodes. I am very sick from APS. This disease is diagnosed by the LA, Cardioplin, and beta 2 glycoprotein blood tests. You mentioned that you tested positive for the Lupus anticoag. Did any of your other blood tests come back abnormal for Lupus? You can have APS without having Lupus and it is important for you to know that APS can have almost the exact symptoms as Lupus (minus the butterfly rash, plus clotting episodes). It is also treated medication wise, the same as Lupus with Plaquenil and immuno suppressants. I am on 3 of them. When I was first diagnosed with APS I had severe muscle/joint pain, nausea, night sweats, headaches, fevers, the list goes on....I felt so sick that I wanted to die. Anti-phospholipid disease can make you just as sick as lupus...Has your dr. ever mentioned APS to you? Many dr.s are not very knowlegable about this disease and the treatement for it. I was lucky to find a rheumy who was very knowlegable about it but have heard absurd things and incorrect info from other dr.s regarding APS.

Are you on any medications for the LA? If not, plaquenil is the main treatment for this disease and it helped me so much for several years. You should also be taking an aspirin a day and folic acid. Those will not help your symptoms, just help prevent a clotting episode (stroke, heart attack, etc.). Please feel free to message me with any questions you have regarding APS. Im sure I can help you! Having delt with this for 9 years, I am pretty knowlegable about it. There is hope for you to feel better once you have the proper information.
Hugs,

melissa "
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Reply #2 - 02/07/10  6:40am
" Hi Melissa (luvmyanimals)and Cmeiam, I notice Melissa seems to be very up to speed on Lupus Anticoagulant. I have Portal Vein Thrombosis (partial blood clot in an important vein going into the liver) and my docs finally figured out that it was caused by LA. I've only known this for a few weeks. They have put me on Warfarin (Coumadin) and that seems to be the end of the story. I have no symptoms and I feel fine. I wonder if I could ask you a question or two? Do you know the likelihood of the LA disappearing? Might this just last six months and then things are back to normal, or do I likely stay on this medication forever? They didn't re-test me, and now that I'm on the medication, I'm afraid a confirming test will not be very reliable. I see you recommend drugs other than Warfarin. I wonder if you could explain the difference. I am naturally concerned about side effects from taking the medicine and also the dangers associated with having v thin blood. Sorry to bother you with so many questions! Any thoughts would be very welcome. Cmeiam, as I said above, I have no symptoms and feel fine. Sorry if that isn't very helpful...

All the best and good luck!
Rich "
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Reply #3 - 02/07/10  7:26pm
" If you test negative for the anti-coagulant and the anticardiolipin is there still a high chance the beta 2 glycoprotein blood tests would turn up positive? Is the glycoprotein a common test? Also just curious if the results can change with these tests like the ANA. I was negative for both the anti coagulant and the anticardiolipin. "
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Reply #4 - 02/08/10  11:44pm
" Hi RC,
Unfortunately, Lupus anticoag. antibodies never go away. They can go into remission, meaning, your immune system can stop producing them for a short/long period of time, but being that you tested positive for LA AND you have had a veinious thrombosis the chance of you having another one if you stop the blood thinners is very high. This stinks, I know, but you would be like a walking time bomb in my opinion. It can happen without you even knowing you are making a clot and you dont want to risk having a stroke or heart attack. If someone tests positive for LA but has never had a clot, the standard treatment is usually aspirin therapy or, if you antibodies are really elevated, like mine were (and I did not clot) Plavix is also used. So, really, what you are doing is the best thing but I would stay on blood thinners for life. If you get your INR tested regularly, its not as dangerous as it seems. You just have to be careful not to eat certain vegetables which can also thin your blood (onions, dark green vegetables, etc.) This can thin your blood too much which is not good either. Stress, lack of sleep, an illness can all trigger an auto immune response which can trigger your immune system to start to produce the phosphlipid antibodies (which causes the clots). Since you dont have any other symptoms from APS (anti-phospholipid syndrome) right now and if you arent still clotting on the coumadin/warfarin you probably dont need Plaquenil right now. IF you ever start to feel sick or continue to clot, plaquenil is the standard treatment for APS/LA. It helps to keep the immune system from producing the LA/phospholipid antibodies and also thins the blood a bit and also keeps the blood from being sticky (which also causes the clots). I do know of a couple of people who still clotted while on Coumadin and they were also put on Plaquenil. Im sorry to say though, none were taken off the blood thinners. So, you will always have this but it can go into remission per sey. Like I said, the only problem is that you really dont know when/if it will strike again. I hope I answered your questions. If not, message me anytime. Im trying to take care of ryan and type this real quick so if I missed something, Im sorry.

Allison. My LA/CA was always negative but my rheumy tested me with the BETA 2 Glycoprotein blood test which is one of the most accurate tests for APS. I had many symptoms of APS other then clotting. My Beta 2 was sky high for 6 months straight but slowly lowere while being on the plaquenil. I was not put on coumadin (though a neuro said I should be) I was on Plavix plus the plaquenil which was told to be enough for me. Now I take Aspirin and Folic Acid every singe day for the rest of my life. You could ask for the Beta 2 Glycoprotein test but since your LA/Ca were negative, they may not test you. You can protect yourself just in case by taking 81mg of aspirin (which is very safe in most cases) and added folic acid. But, your rheumy may not even say that aspirin/folic acid is necessary. Ask if it is safe for you and then just take it if he says its safe for you.
Ok, gotta run. Let me know if I missed anything. "
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Reply #5 - 02/09/10  12:09am
" Dear Melissa: Thank you SO much for that awesome reply! I really appreciate it. I suppose if I keep a fairly stable diet, I can adjust the medication around that and I should be fine. Good thing I'm not a professional boxer or stunt man!

Does anyone you know of try to keep their blood in the right INR region solely based on their diet - i.e. eating tons of green veggies, onions, green tea and whatever else thins the blood, or is that a bit too erratic and unpredictable?

I wish you all the luck and if you are ever in Thailand, it would be great to meet you.

Best regards,
Rich "
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Reply #6 - 02/09/10  1:36am
" Most people do not know if you have LA and have to take the lovenox shots you can eat what ever you like. But on (COUMADIN YOU CAN NOT) because the green vegatables and other tubal vegtables and cranberrys will make you more apt to having more clots. "
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Reply #7 - 02/09/10  2:04am
" Dear Cmeiam, Many thanks. Jeez, this is a bit of a bummer. Does this mean that I simply can't eat green veggies at all, or that if I do, I can compensate by having a lower dosage or something of Warfarin? What I am hoping is that I can get on a diet, which includes green vegetables and then adjust the dosage appropriately, or am I just dreaming?

Thanks again,
Rich "
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Reply #8 - 02/09/10  10:55am
" Cmeiam,
Lovenox injections arent always used for APS. When someone has clotted, AND has the phopholipid antibodies (LA) they can still clot on lovenox because their blood is not monitored regularly. Yes, it is an easier blood thinner to be on (but you still cant eat everything you want in large quantaties even on lovenox). The key to preventing clots in people with this disease is to keep the blood at a safe level and therapeutic level so they wont clot. The only way to do this is by having the INR checked regularly at the clinic. Some people who still clot on coumadin/lovenox are also put on Plaquenil. So, not that what you wrote is wrong, its just not the normal blood thinner used for APS. I was on lovenox injections my entire pregnancy because you cant be on coumadin/warfarin while pregnant.

Rich......I wish I could tell you that you can be safe eating only a special diet which thins the blood, but you arent :( I am the healthiest eater around but diet alone will not control your disease. IF you had not clotted or have no clotting problems then I would say YES, you could do diet only to PREVENT ever clotting. But, again, you are playing russian roulet by not continuing to take the blood thinners. You cannot eat enough of the vegetables to thin the blood enough and keep it from being sticky. You also need to have your blood monitored (INR test) on a regular basis to make sure your blood is at a safe level. Coumadin/warfarin doses need to be tweaked at times. You will only know this by having your INR checked regularly. Many different things can contribute to the level changing (being too thin or too thick) and diet is one of them as well as stress, getting sick, etc. The good news is that you DONT need to eliminate all the foods that can thin the blood. You just eat them in smaller amounts. I know of many people with APS who are on Coumadin who still eat a salad a day with no problem. You just dont want to eat too much of the dark green vegetable or veggies which are high in Vitamin K or thin the blood too much. The blood specialist you go to should be able to tell you which veggies are high in Vit. K and which should not be eaten in large amounts on a regular basis. Also, diet can play a role in your immune system and not only your blood. Certain vegetables eaten regularly (as well as certain supplements) can trigger an auto immune response which you also DO NOT want. It can cause your immune system to start to produce the phospholipid (LA) antibodies which can also cause you problems. Potatoes, eggplant, beets, tomatoes, zuchini, alfalfa sprouts, certain dark skinned veggies eaten regularly can all cause immune responses. I made myself extremely sick from eating beets for a week every day. Lastly, any type of supplement that has GRAPESEED extract (considered an anti-oxidant), echinacea, or immune boosting substances can be toxic for some of our bodies. I know it sounds like you have to change so much. You dont. Once you realize what you need to stay away from it gets easier and is not as big of a deal as it seems right now. The safest thing for you to do is to stay on the coumadin/warfarin and get monitored regularly. I really am all for natural treatments and diets but it just is not safe with auto immune diseases (except for Celiac disease which is controlled only by your diet). I hope this all made sense to you. Feel free to message me anytime and if you are interested, I am also part of a wonderful APS group whose moderator knows more about APS then most dr.s He has taught me so much and can answer any of your questions honestly and with correct information. If you want the group address, message me and I will give it to you.
Hugs and Im here for you :)
Melissa "
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Reply #9 - 02/09/10  12:46pm
" Dear Melissa, My goodness, I don't know what I did in a previous lifetime to deserve all the help you are giving me, but I sure do appreciate it. If I read you correctly, what I need is an index card to carry around with me (oh wait, I'm dating myself, I will use a notepad on my phone instead) listing all the stuff I shouldn't eat and just go on living my life, minus a few foods that I just happen to love. It could be worse - A LOT worse. Just to let you know a bit of my background, the clot I have, in my portal vein to my liver is usually a secondary symptom of something Much worse, typically pzncreatic cancer, cirhosis of the liver, etc. Also, this clot is only partial. And, I didn't have any others. So, skipping tomatoes and green veggies, while a shame, is a whole heckuva lot better than the alternatives that were staring me in the face a month ago!

You have really been too kind, writing me so much and in such detail. My doctors have been trained overseas (my main doc in the US), but the communication here in Thailand hasn't been so hot. They just kinda told me to stay away from vegetables high in Vit K and that was that.

I do not have any other burning questions for you now, but when you have a bit of free time (no rush!), I have some less pressing questions: What exactly is this disease called? Are there side effects to taking Warfarin and is there anything I can do to minimize them? Is there any book you know of that could teach me a bit more about all this? What effect does drinking alcohol have on Warfarin/blood?

Thanks for offering to intro me to the APS group, but as I don't have APS (to be confirmed shortly) or any other tough questions, I guess this isn't necessary at present.

I'm seeing my doc tomorrow and will ask her about whether I've been tested for APS or SLE. I think I have been and that I don't have these, but I want to double check.

Take care and thanks once again!

Rich "
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Reply #10 - 02/09/10  4:03pm
" Hi Rich.
Please know that I enjoy helping you! It took me years to learn all I have about this disease and am happy to pass along the information and save time/frustration/ and incorrect info to others. First, u need to know that LA and APS are the same thing. Most likely, you have antiphospholipid syndrome which is why you have a positive LA and the clot. It is an auto immune disease just like lupus is. It can cause many other symptoms other then clotting so its important for you to be aware of the numerous symptoms you can develope in the future. This disease can mimic lupus symptoms to a T. Minus the butterfly rash, plus clotting. You may NEVER develope other symptoms. You may only clot. In my case, I dont clot, it attacks my entire system which is controlled in me by taking strong immuno suppressants. Im am in the minority of people being so sick from APS. Most people only clot and feel fine physically. If you do ever develope symptoms (muscle/joint pain, migraines, headaches, flu like symptoms that dont go away, etc) then the drug used for you would be Plaquenil along with the blood thinner. Some people who clot are also put on plaquenil which keep the immune system from producing the phospholipid antibodies but not ALL APS'ers are put on it. It depends on your clotting response to the coumadin and your LA levels. If you continued to clot, plaquenil should be started. The trick is finding a good rheumatologist where you live who is knowlegable about APS and the treatments for it.

You can drink alcohol on coumadin. Not a problem in moderation. The only side effect I have heard from coumadin is bruising/bleeding easier. Most people I know who are on it have absolutely no side effects. You do need to start to wear a medical alert bracelet though. It is VERY IMPORTANT that you have something on you that says you are on blood thinners and have Antiphospholipid syndrome. A mild car crash can cause internal bleeding more then a normal person. And, since strokes, heart attacks, etc. can occur with APS, if anything ever happens and you cant talk, they will know that you have a medical problem and are on a serious blood thinning medication. I wear one that says I have APS/Lupus am on blood thinners and steroids.

There is a great book called Sticky Blood explained by Kay Thackray who is part of the APS org. in UK. She wrote a very good book with good info and easy to understand. Another book is called Positive Options for Antiphospholipid Syndrome by Triona Holden. Also a good book. Both can be bought on Amazon. Im very tired today from my MTX injection so Im not sure how much I will be on today. Keep us posted and message me anytime you have questions.
Melissa "

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