APA Syndrome help

[missy8632]

Hello,

I was Dx with APA syndrome a few years ago. I have been tested a few times and each time I get a different result. My lest test had a (+) Anticardiolipd level of 37, I guess 12 is normal. However, other times I have been tested aznd have a (+) Lupus antibody. From the research I have done, you onlyh have one or the other not both. Does anyhone else experience this switch?

[Mountain Man]

Getting significant variation in anti-cardiolipin tests is quite common; unfortunately, there doesn't seem to be much significance in a low reading - you still have APS, and you're likely to get a higher reading when you're next tested.

As for your Lupus anticoagulant reaction, perhaps someone else is more farmiliar with it - AFAIK It isn't unusual for APS patients to get Lupus antibody reactions - yes, APS is an entirely different disease from Lupus - but I don't really know anything more that might be helpful.

MountainMan

[kaylish]

I was diagnosed with APS 3 years ago. My anticardiolipin IgG reading was 99... which was classified as high. I also had Lupus anticoagulant. I recently had them tested again and this time it was a good result to the extent the Hemotologist said if its another good reading in 6 months I could possibly come off warfarin. The risk of having a thrombotic event with APS after ceasing warfarin is bewteen 20 -70%. I find this to be a higher risk than bleeding internally from the warfarin. As I dont want to lose my protection, I think I am going to stay on warfarin even if I do get a good result.

Kaylish

[Mountain Man]

I didn't like the odds of an "adverse event" if I stopped warfarin, even if my anti-cardiolipin numbers were normal. I've been on warfarin for 15 years now, with no signs of bleeding problems.

Just make sure that you keep getting your INR tested regularly. Just because your INR has been steady for years doesn't mean that it can't change significantly in only a few weeks.

MountainMan

[missy8632]

Thanks for your help. I am not currently taking any meds for my APA. I was on Lovenox last year during my pregnancy, but it was stopped soon after I gave birth.

I's currenlty having headaches and joint pain (hips, knees, and feet.) I have never had this much pain in my life, not to mention carrying a 23 pound one-year old around does not help.

I have an appt on Wednesday w/ my hemotologist.

[kaylish]

I was interested to read Missys entry about the joint aches and pains. I have the same from time to time and have often wondered if this is caused by my vasculitis, MMN or APS. The Doc doesnt really know infact he says I am learning about this disorder just as you are. Its a pity there is not more research done into APS. Is there anybody else who suffers joint aches and pains with APS ? At present my lower back is so painful that it is affecting my walking.Will see the Doc next week to see if there is an association. At least Mountain Man when you are on warfarin you are being regularly monitored. Take away the warfarin and you lose that constant monitoring. I see this as a security :)

[missy8632]

I have done a lot of reseach and joint pain is a s/s of APA sydrome.
My hemotologist I'm seeing wednesday is one of the best in NY, so we shall see. It is just hard to find a single doctor to care for me.

[JoD]

You can have APA and Lupus together. I do, both are auto-immune disorders.
The lupus causes myositis in me, or muscle pain. I grew up juvenile arthritis.
Sometimes I think all auto-immune disorders are the same...just affects different parts of the body.
Joanne

[missy8632]

Thank you.
My muscles and joints have been killing me. I cannot sleep on myh sides d/t hip pain. I'm glad to know I am not alone.