Just diagnosed with Anti-Cardiolipin

I was just diagnosed with Anti-Cardiolipin and feeling scared. The doctors said my levels were really high does anyone have this or know what these results mean?

Cardiolipin IgM 98

Cardiolipin IgA 67

Cardiolipin IgG 33

I was having really bad legs and chest pains with some swelling. They put me a warfarin, is anyone else on this also?

Im always IgG high positive but the other 2 fluctuate. I also have an inherited “protein c” deficiency that’s caused constant thrombophlebitis. My Dr’s had me on a baby asprin a day for a while but now im on 75mg of plavix daily due now having “sticky” blood . I can’t be 8n warfrin or lovanox long term because of my frequent and sudden joint and tendon tears and animia… definitely ask your dr about any concerns and or side effects, good luck:)

I have no experience of this so far with Dx Lupus 3 years now. I do however 'feel' how scared you are & urge you to talk with the specialists re your concerns. Best Wishes Kaz xo

Being on blood thinners is a very scary thing! But it can save your life at the same time. Arm yourself with Eduction! It is the key to resolve the fear. Learn as much as possible at first. I agree with Kaz. Have a long conversation with your doctor about the fear of the disorder and the direction to follow with the blood thinners.

Wishing you all the best!

Deenie

For me it means my blood clots too fast and puts me at risk for clots and so on. Definitely talk to your doctor about any questions or fears you have, also do not miss your appointments, being on warfarin puts you at greater risk for bleeding. I've had this for several years now, best advice talk to your doctor follow his directions. Good luck to you

I am IgM positive with anti cardiolipins. I now have varticulitis on my thighs. Ib have extreme leg pain and problems walking. Do you have this same feeling?

I don't know anything about it, but here's a page that explains some of it.http://www.healthcentral.com/encyclopedia/408/553.html

I have so many relatives on warfarin or coumadin. Mom switched to a brand named Eliquis because you don't have to keep getting your blood tested to keep the right levels in your blood, and it has fewer side effects than Warfarin. Pradaxa is cheaper than Eliquis and with that you also don't need constant blood tests. Sorry about your news. It seems I get a new diagnosis every time I go to the Dr. and it's exhausting and discouraging. Blood clotting issues are quite common in Lupus.

Best wishes.

Louise, I wonder if you mean vasculitis. I have that too. Verticulitis is diverticulitis, an infection in a pocket of the bowel. I have bad leg pain. I think part of it might be bone pain, because when I take 10,000 IU a day of vitamin D, the pain eases up.

louise said:

I am IgM positive with anti cardiolipins. I now have varticulitis on my thighs. Ib have extreme leg pain and problems walking. Do you have this same feeling?

Louise, I'm not alone! How high is your IgM? I have the worst pain and swelling and always thought I was crazy. I'm glad I found this and a few other groups and have learned a lot in the last few days and not feeling so alone.



louise said:

I am IgM positive with anti cardiolipins. I now have varticulitis on my thighs. Ib have extreme leg pain and problems walking. Do you have this same feeling?

When the doctor said my levels were really high scared me of course and I think that is when I went into a fog. What would be a typical range, is there a way to lower the levels?

dawncelest said:

Im always IgG high positive but the other 2 fluctuate. I also have an inherited "protein c" deficiency that's caused constant thrombophlebitis. My Dr's had me on a baby asprin a day for a while but now im on 75mg of plavix daily due now having "sticky" blood . I can't be 8n warfrin or lovanox long term because of my frequent and sudden joint and tendon tears and animia.. definitely ask your dr about any concerns and or side effects, good luck:)

Well Jung Tao ever lab differs a little with their “standard” range so you need to go by those numbers… was there some particular event or hospitalization that made your dr run your antiphospholipid antibodies/cardiolipin?? It had been over 2 years since I’ve had to see my hematologist because my my blood issues were being monitored by rheumatologist…then when I was hospitalized my blood and platelets were crazy thick , crp/sed rate super high with my positive IgG sooo I needed a new, full hematologic work up when I got out… my rhuemy does run my antiphospholipid antibodies (false positive syphilis test) every few months, it’s always at least a moderate positive. My left lower leg is always very tender and hurting from the thrombophlebitis and bone issues but just because you have pain or throbbing in your legs don’t mean your having a DVT but calling your prescribing dr is the best thing to do if your scared or confused about symptoms.


Dawn,

This was on the report:

Reference Range(s)

Cardiolipin Antibody (IgA)

≤11 APL Negative
12-20 APL Indeterminate
21-80 APL Low to medium positive
>80 APL High positive

Cardiolipin Antibody (IgG)

≤14 GPL Negative
15-20 GPL Indeterminate
21-80 GPL Low to medium positive
>80 GPL High positive

Cardiolipin Antibody (IgM)

≤12 MPL Negative
13-20 MPL Indeterminate
21-80 MPL Low to medium positive
>80 MPL

High positive

I had a positive ANA and with my symptoms he ran a few different test and this one came back. I'm being referred to a rheumatologist. I have had a lot of pain and swelling.


dawncelest said:

Well Jung Tao ever lab differs a little with their "standard" range so you need to go by those numbers.. was there some particular event or hospitalization that made your dr run your antiphospholipid antibodies/cardiolipin?? It had been over 2 years since I've had to see my hematologist because my my blood issues were being monitored by rheumatologist..then when I was hospitalized my blood and platelets were crazy thick , crp/sed rate super high with my positive IgG sooo I needed a new, full hematologic work up when I got out.. my rhuemy does run my antiphospholipid antibodies (false positive syphilis test) every few months, it's always at least a moderate positive. My left lower leg is always very tender and hurting from the thrombophlebitis and bone issues but just because you have pain or throbbing in your legs don't mean your having a DVT but calling your prescribing dr is the best thing to do if your scared or confused about symptoms.

Ok well your IgM is the highest/strongest positive but the others low moderate for now but remember this number can and usually will fluctuate including the ANA. Im still not sure why your on warfrin?? Have or do you have a DVT ,PE or superficial clotting??

I was dx’d with this years ago & have been on Lovenox, as I developed a clot after the birth of my last daughter. Generally, anyone who is positive is put on blood thinners as a precaution – sometimes they keep you on a lower dose vs a higher “therapeutic” dose. It was hard to regulate the Coumadin, thus the reason I’m on the Lovenox shots.

I had leg clots before that were very very very very painful and with everything else going on tested and put on the warfrin after the last results.

I was diagnosed with antiphospholipid/anticardiolipin 27 yrs ago after successfully delivering my only child. I have been on Coumadin therapy since. Even on Coumadin therapy, I have suffered a TIA, emboli of the lungs after surgery, stage 3 kidney disease and I had my mitral valve replaced with a mechanical one. My hematologist said all related to the autoimmune diagnosis. I have a great team of drs that work closely together to keep me as healthy as possible.