Anticardiolipin antibodies, anyone?

Factual Questions
1

A little background:
Four years ago, I ran into a little problem: I was having horrible pain in my left leg (at the groin level) which made it nearly impossible to walk. The doctor, over the phone, suspected a muscle pull and prescribed rest and the use of a heating pad.

After noting, and having family verify, that the leg had swollen to about 150% of its normal size, as well as taking on a purplish hue, my wife took me to the ED. Thankfully, I knew prior to the ED what the problem was, as I used to test people for this condition – DVT (deep venous thrombosis) – Doogie Houser wanted to send me home with a diagnosis of a muscle tear. Only after I refused to accept this diagnosis did he hunt down a troupe of residents from all different specialties, until finally the chief resident figured it out (now that I think of it, I probably just should have flat out told them what it was and saved the hassle…ah well). Anyway, the clot broke apart a day or so later and travelled to both of my lungs, causing pulmonary infarction, a lovely night in ICU, and eight days laid up in a hospital bed. :rolleyes:

The resulting diagnosis was that I have anticardiolipin antibodies in my blood, which causes by my blood to be “sticky”. The first evidence of this, it turns out, was failing the syphilis test (RPR) on my prenuptial blood test four years earlier (ooo…that was fun to explain) :eek:.

OK, that was probably a little too much background…sorry for the rambling! First post jitters… :smiley:

This condition is apparently pretty rare, and fairly new to the scene (it is often seen in lupus patients, but only recently discovered to exist outside of that complex); consequently there is no well-established treatment regimen. I am currently taking warfarin (rat poison, YEAH!) to keep the blood flowing, but that obviously carries with it the attendant risk of bleeding.

Do any other Dopers suffer from this problem, and if so, what treatment are you undergoing and has it been effective in preventing recurrence of the clotting?

Thanks!

2

Since this is General Questions, I’ll try to give some factual answers. For other Dopers’ experience, you may want to try posting in IMHO or MPSIMS.

In any case, anticardiolipin antibodies are often part of what’s called the anticardiolipin syndrome (also called antiphospholipid syndrome). There are many manifestations of this syndrome, some of which you have been found to have.

In addition to a tendency to develop blood clots (which often recur in the absence of warfarin, or allied, treatment), people with the syndrome also often have low platelet counts in the blood, a mottled looking rash/discoloration of the skin, a tendency to migraines, and sometimes inflammation around the heart valves. Women with the syndrome may have trouble carrying pregnancies to term, with miscarriages being, unfortunately, common.

I am sure there’s a fair bit on this syndrome to be found on the Internet. For example, this site often has good articles on medical conditions.

At the risk of meddling, may I ask if you’re seeing a specialist in blood clotting disorders, a rheumatologist, and/or an immunologist?

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Hi Karl,

Thanks for the reply. I fortunately do not have any other manifestations of the syndrome (although I’ve not been tested for valvular inflammation, that’s the first I’ve heard of that), just the antibodies. I see a hematologist once a year (just this past week in fact), and he pretty much says, “Well, there’s no new information on the treatment of this, so we’ll just keep going with what seems to work.” I’m personally of the opinion that I’d rather NOT risk another PE, so I’m satisfied with the treatment plan set forward as I’m not really involved in any high-bleeding-risk activities.

Realizing that some have chosen not to treat with anticoagulants, however, I was curious if any here have chosen that route and if it has been effective – hence the placement in General Questions. I can certainly see it in MPSIMS (or even IMHO) as well. If a Mod feels it should be moved, that would be just fine with me :slight_smile:

Thanks again!

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Well, the risk of recurrence for people with the syndrome who’ve already had a blood clot is high, about 70 percent.

Here’s an abstract of an influential study on the question.

Of course, your physician(s) know you the best and you should discuss any treatment decisions with them.

Hope this was of some interest.