Hi,
It can be common for APS patients to also have Lupus. I have primary APS and secondary lupus. My suggestion is that you make an appointment with a rheumatologist who specialized in APS and Lupus/mixed connective tissue disease's. I am not on coumadin but am on Plaquenil, Prednisone, methotextrate & aspirin. Rheumatologist are the ones who will give you the proper medications if you do in fact have lupus and APS.
Melissa

Hi,

I have Lupus Anticoagulant but not Lupus. I found out I had it in July while pregnant. I have a healthy 10 month old now.

When in the hospital I was tested for LUpus as well which I did not have. There is a (think called ANA) test. If it was negative you do not have lupus. Were you tested for this as well. I am thinking you were.

I take Coumadin 6mg. daily. My INR fluctuated alot in the beginning.

I am interested in hearing your story as I hardly ever meet anyone with just the Lupus anticoagulant.

What do you think caused your clot besides the Lupus Anticoagulant? Were you pregnant or on birth control?

Pam

Hi
I also have lupus anticoagulant, but not lupus. I am on warfarin for life too. Like Pamela, I haven't heard of many people having just lupus anticoag. Have your doctors given you any information since they called?
Hope everything turns out well for you :)

I have both APS and SLE. Have been on coumadin for nine years.I have had 3 episodes of PE\'s.
I have not had a clot in years now. It takes awhile to get your INR stable but it will happen. I was tested for lupus when I had the first clot but the ANA came back negative. You can have a negative ANA and still have lupus. Talk to your MD about this. Read up on the symptoms of lupus and if you have any of them let your MD know. I suggest the mayo clinic web page it is very good.
I live a full active life. You can too. All you need is to be aware of the precautions you need to take being on anti coagulents. You will need to become versed in what foods have vit. K and let me tell you there are loads of them... You will need to talk about the possibility of bone loss from coumadin over the years with your MD and I suggest that you start an exersice program. It will help keep you feeling good. Watch out for NSADs too just about all of them can change your INR. Ibprofan, Aleve, naproxan just about any over the counter pain relief except tylenol is off limits now. Talk to your phamasist too. They can give you loads of help in what not to do or take or eat. If like me your into fresh veggies you will need to eat the same amount of green stuff everyday to keep your INR from bouncing all over the chart. Find out where the MD wants it. Usually that is between 2 and 3 sometimes 2.5 and 3.5, depending on your doctors advice. Geting it level and keeping it there can be frustrating but it can and will happen. After a bit you will become accustom to the diet and how your body reacts to the coumadin and it will be "normal" to you.
Make a habit of talking every new med. over with your pharmacy. Make them your friends and when they get to know you they will be your best source of imformation. Pick one and stay with them. They have programs now that will track your meds and flag anything not good for you. A really good pharmacy will know you and know when your Rx is due and will help you keep track of everything. I go to CVS. The people there are great and so very helpfull.

Hello, I'm new and am just now reading this post. I also just have APS. I test positive for both the LAC and elevated anticardiolipins. I am on Coumadin for life after have a PE at 29. I was also started on Plaquenil with really good results. I know it's scary to get this information at first, but I think that with proper care and a good doctor, most can live a full and happy life. I do. I still work full time and feel good most of the time, with the exception of an occasional flare (which I'm unfortunately in the midst of right now).

I found out I had this disorder in 2001 after taking some low-dose birth control for 6 weeks to help with lack of sleep (perimenopausal symptom), and my whole left leg clotted. I was in the hospital for over a month to stabilize my blood consistency, and was on 18mg of coumadin for 6 months thereafter. I'm no longer taking any medications. As long as I stay away from taking (female?) hormones, I am not expecting any issues.

Sprancej,
Im a bit concerned that you arent taking anything for clotting. Were you actually diagnosed with APS, or did you just have a clotting episode from the birth control pills? If you do have APS, you should at least be taking a 81mg baby aspirin every single day forever. You may even want to check into taking 1mg of folic acid daily. Im only telling you this because I am very knowlegable about this disease and once you have clotted from APS you are much more prone to it. I would hate for something bad to happen to you in the future from not being on something to keep your blood from sticking together. APS never goes away. Its an auto immune disease which can be triggered at any time. Im not trying to scare you but you should really see a rheumatologist or get a second opinion on whether you should be taking aspirin or not.
Melissa

Melissa,
Thanks for your concern, but I do NOT have APS, i only had a clotting episode re: lupus anticoagulant.

Are you aware that Lupus Anticoag. blood test is a test for phospholipids antibodies which is what causes clotting in APS? Anti-phospholipid syndrome is determined by the lupus anticoag., anticardioplin, and beta 2 glycoprotein blood tests. Just want to make sure you are aware of this. If a person has the phospholipid antibodies and have clotted they most likely have APS. You can google the LA blood test and it explains what it means. Its a test used for APS.

Hi everyone. I just got back from the Hematologist office and the Lupus anticoagulant disorder tested positive again. He warned me again of the risks of miscarriage so I am worried about that when I plan on having a family in a few years. I still don't know if I have lupus or not. I forgot to ask him if he was going to test me. I don't see him again for 6 months.

Hi April,
Honestly, you dont need to worry about pregnancy because if you go to a Perinatologist which I highly recommend (a high risk OBGYN) they will monitor you very closely AND put you on some sort of blood thinners. I have APS (found out before I tried for a baby) and had a sucessful pregnancy. When you start to consider having a baby, see a perinatologist first. Also, are you aware that APS causes almost the identical symptoms of lupus? You should really see a rheumatologist since you tested positive for the LA again. They (rheumies) are the ones who specialize and treat APS patients. They are much more knowlegable about the auto-immune part of this disease then hematologists are. You can email me if you have any questions. Im pretty knowlegable about APS.

Hello - I am a 67 year old, healthy active mother and grandmother who was just admitted to the hospital with multiple blood clots in the lungs. No know risk factors so I am scheduled to see a hematologist to see if we can determine causes. But I am just beginning monitoring my coumadin and don't know if I will be diagnosed with Lupus Anticoagulant. I almost would rather since one of the other reasons can be "hidden cancers". I have had almost every test possible but admit this cancer thing is on my mind. I am just starting on the roller coaster of Coumadin and levels to take. They don't think I actually have Lupus. My INR test was 2.4 when I left the hospital (normal I'm told is between 2-3) and they wouldn't release me until it hit 2. Now I'm home, back to normal activity and it's dropped to 1.3 so up goes the Coumadin levels. Did anyone get their Lupus Anticoagulant diagnosis through a hematologist?

I got my Lupus Anticoagulant diagnosis through a Hematologist. I saw him in the ICU and he told me to make an appointment after I was released from the hospital. I have had 4 Blood Clotting Disorder (including Lupus Anticoagulant) blood tests over about a year and a half. Because of the severity of my Pulmonary Embolisms and the LA diagnosis, my INR needs to stay between 2.5 and 3.5 for the rest of my life. Honestly though we try to keep it over 3.0. I wear a medical alert bracelet as well. Keep in mind that Lupus is NOT the same thing as Lupus Anticoagulant Disorder. They will want to run a large screen for blood clotting disorders, not just LA. They will determine if they think it is a good idea to see a Rheumatologist for a Lupus test. I decided to see one on my own because I thought I had some symptoms. The lupus test was negative but I was diagnosed with something else. It has changed my life. I did not know anything about it other than I had heard of it. I got a lot of help though! All this will determine how long you will need to be on blood thinners as well. It will take time to find a level that works for you. Even now my levels change out of no where but we just adjust accordingly and move on. I hope things go well for you. Be patient if you can. It is hard I know. Send me a message if you have any questions or if you just want to talk. I was so thankful to be alive and I live each day to the fullest. Let me know how you are doing. :)

Hi I 2 have Lupus and APS after the blood clots that put me into the hospital 2.After all their testing that is what they found out that I have both lucky me huh lol lol.Your dr will ask u about u 2 c if u may have Lupus 2.

It is rare that a positive lupus anticoagulant test means that you have it. In fact many professional in medicine have tried to rename the test for that very reason. Although I have read that it isn't uncommon for people testing positive to have an autoimmune disorder such as chronic fatigue syndrome. I just had a surgery canceled due to a positive LA test and I have CFS. I am hoping that that is the reason and not something else. A heamatologist will do more testing on us to find the root cause. Good luck with your diagnosis