Question about Antiphospholipid syndrome/cardiolipin

[rjkte]

I have had uncontolled Lupus for 10 years with no major organ involvement. I do not know  what remission is and have been in major pain for the last 10 years until recently when after taking many other lupus drugs, I've been on Remicade & methotrexate. Despite it improving my life significantly, I'm apparently developing antibodies against the remicade and will most likely have to quit taking it. Every new med I take I seem to get a reaction to ( the reaction minics a lupus flare up with the malar rash, high fever, sore muscles and painful swollen joints, fatigue). On to my question.... I have known all this time (10 years) that I have antiphospholipid syndrome with at positive cardiolipin. No symptoms....no hx of clots no miscarriages, I actually have had 2 pregnancies resulting in 3 healthy children (twins). Now since moving to a new state (from MN to CO), suddenly there is a bunch of hullabaloo about this antiphospholipid syndrome and a major push from my pulmonologist (who I was refered to) to go on "lifetime coumidin". I'm trying to make an educated decison here (to start on coumidin or not) and am confused as to what to do and if this is really necessary. I understand the risk of stroke but I also need to weigh that with "a lifetime of coumidin therapy." and also the fact that I react to medicine very easily.I also have rheumatiod arthritis and have major hand/joint involvement ( left hand with all swan necks, right hand with the deviation of fingers off to the right and dislocated thumbs on both hands) and feet (severe bunions) that will need surgery  at some point. Also, osteoporosis from long term prednisone (still on it X 7 years now)and am looking at going on Fosamax or related drug. Again....I react to almost every med I take so I really don't like the fact of adding more meds to my already well stocked pharmacy. Plus I'm not sure if going on "life time of coumidin" is really necessary??? I've had a VQ scan (?) which was negative for microclots in my lungs and an echo which showed normal pulmonary pressures. Any info to help me make this decision is greatly appreciated.

[Kevin Pho, MD]

In the abscence of any clot or thrombus formation, the recommendations are for an 81mg dose of aspirin.  Another consideration would be the concurrent use of hydroxychloroquine and aspirin.  Oral contraceptives should be avoided.

In cases of aspirin allergy, medications like Plavix can be considered.

I am not aware that coumadin is indicated in asymptommatic individuals without a history of clot.

This option can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b

[myproblem]

From personal experience, and on the advice of several doctors, I would have to disargee slightly with the previous comment. Asprin therapy has not proven helpful in APS patients. Plaquenil has proven to decrease coaguability in APS patients with lupus. You still have to take it for the rest of your life, but it has much less risk than a blood thinner like coumadin, warfarin, or heparin. It is a twice a day drug, and is also intended to slow the progress of rheumatoid diseases. You should at least get a second opinion from a Dr. who is not affiliated with the one you are seeing not. You may consider consulting a hematologist. My Dr. sent me to one voluntarly. Considering you have not had any m/c and no thrombotic events, coumadin seems a big jump. For me, the plaquenil has had no side effects, although I do not feel it has helped my other conditions, and I now take Arava to hopefully slow the disease progression.

[sue90x]

Hi all,
       I had a major stroke aged 19 in 1984, was diagnosed with Lupus anticoagulant with SLE, I was put onto warfarin instantly, I was on warfarin for 2 years then following my first and only pregnancy,( a l-o-n-g  story) I took aspirin 75mg for 18 years then recently via a changeover of consultants I was told my INR levels weren't even making 1, hes convinced I've had several mini strokes in the last 18 years, and I had to go back onto warfarin, I reacted badly physically to the warfarin, and I'm now injecting myself daily with low molecular weight Heparin. ehich I'm finding acceptable, I'm now 40 by the way
Sue90X