Fluctuations in APS?

[Footprints]

Many years ago....ummmm, 12 to be precise.....I found out I had antiphospholipid antibodies. After a miscarriage, I had testing done and doc found them. Along with some other symptoms, I ended up with a "phospholipid syndrome" diagnosis and told to take daily aspirin. I did that during my pregnancy and pretty faithfully for a long time. Was monitored yearly by a rheum. My levels seemed to come and go, along with positive and negative results for ANA and one other I don't even remember. Along the way, I stopped taking the aspirin since there didn't seem to be any concern about it. Then, four years ago, I started having serious and sudden neurological probs. Went to a neuro for the first time and their immediate thought was stroke from AP antibodies. No, it wasn't but neuro gave me a lecture about not taking the aspirin and put me right back on it (hence I was on it for the lumbar puncture-see the other thread here). Since then, I had to start so many medications that I take around five different pills both morning and night.......so I stopped the aspirin. Just so many pills and the APS isn't on the radar as far as a significant problem.

My question is.....do your autoantibodies come and go? Do I need to take it more seriously? I've been having awful headaches-I have seizures-and I'm so afraid of stroking out, but if I'm on aspirin, wouldn't that make a stroke worse? I'm almost 40. My old neuro used to lecture me all the time about taking my aspirin (I've moved and have new docs who don't know my health at all, unfortunately). Thanks for your thoughts.

I don't mean to sound like I'm belittling APS; my question is how should I know if it's a significant problem for me?

[Mountain Man]

Footprints -

I was DXed with APS 14 years ago; since then, my antibody levels have fluctuated by a factor of 4.

I was put on Warfarin, as I had had arterial embolisms (washed into my legs, fortunately). Initially, I wasn't very religious about maintaining my INR. It apparently got down to 1.4 and I had a series of strokes over a 4 day period before the docs realized what was going on.

Since then, needless to say, I've be pretty good about checking my INR - my target range is 3-4 now.

Please don't drop Aspirin just because you may not have needed it most of the time you were taking it. With APS, it can (and does) flare at almost any time, and it's when it flares that antithrombotic protection is essential. Be thankful that Aspirin is all you need - Warfarin is a notoriously difficult drug from the standpoint of maintaining a correct dosage, and too much anticoagulation can be as bad as too little.

If you're having digestive system problems from the Aspirin, you may want to consider asking your doc to switch you to Clopidigrel (Plavix), which is another good antithrombotic drug. But, since you know you have APS, please take something. Strokes are no fun, believe me, and almost anything isn't too high a price to pay to ensure you don't have one.

Mountain Man

[JoD]

what other medication are you taking and why? Do you have other auto-immune issues?
I was finally diagnosed with APS 3 years after my last child was born ( 26 wk preemie) 5 years before that I had a son who was stillborn and I developed a massive amount of clots after his birth( DVT, Uterine clots, pulmonary embolisms..enough that I ended up with an greenfield filter).
2 years after I was dx with APS I added a lupus dx to the mix. I am allergic to coumadin so take plavix. If you are doing ok with aspirin thank your lucky stars you get off so cheaply!! Don't take chances. Strokes are much like stillbirths...you can't undo them. It is possible with good medical care to prevent them though.
Joanne

[Footprints]

I'm sorry...looking at my initial test re****, I meant to say a positive anti-cardiolipin result showed up. That, combined with a few other symptoms, resulted in the APS diagnosis. What is an INR? That first blood test showed a positive titer of speckled pattern for ANA, and a positive result for anti-cardiolipin IgG (47 glp when less than 23 was normal). Does that mean anything? A few years ago, after my neuro probs started, my ANA was positive at 1:160; a year after that, I see a result from a rheum that says my ANA was 1:640, I was SS-B positive and negative for anti-cardiolipin Antibodies. So it seems like my autoantibodies are all over the place. (and then there is the positive TPO antibodies, which gives me Hashimoto's-thyroid).

Other meds.....two for seizures (that's 8 pills a day), one for a pathetic adrenal gland (steroid 2x a day), one for thyroid (1 a day), one antianxiety because my antiseizure med makes me emotionally unstable (1 a day).

Thank you for your thoughts. I took an aspirin last night :)

[Mountain Man]

INR is a measure of the degree of anticoagulation. It actually stands for International Normalized Ratio; the higher the number, the more anticoagulated you are. 1.0 is "normal". Most people with APS are on some drug which raises their INR, sometimes to as high as 3-4. INRs over 6 are dangerous (potential spontaneous intercranial spontaneous bleeding (hemorrhage).

Anticardiolipin IGG is saying that you had a specific type of antibody (IGG, there are several types; it relates to the kind of blood cell that produces the antibodies) which reacted to cardiolipin (one of the most common phospholipids).

ANA is Anti-Nucleic Acid antibodies, and is present in most autoimmune diseases, such as APS or lupus.

Aspirin doesn't often cross-react with other meds, and none of your other meds are the kinds that would cross-react with Aspirin, so you should be able to continue with daily aspirin - as always, though, when taking mutliple meds you should see your doc every 6 months or so so that your bloodwork can be monitored for signs of any problems. Many of us have to take multiple meds - that seems to tbe pretty common for APS.

Mountain Man