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Arthritis (Expert Forum)
Question about Antiphospholipid syndrome/cardiolipin
Answered by
Kevin Pho, MD - Internal Medicine
Kevin Pho, MD
Boston - MA
This forum is for questions and support regarding arthritis issues such as: Arthritis, Autoimmune Disease, Bursitis, Fibromyalgia, Gout, Juvenile Rheumatoid Arthritis, Lupus, Myositis, Neuralgia, Osteoarthritis, Polymyalgia Rheumatica, Rheumatoid Arthritis, Sciatica, Tendinitis, Vasculitis.
Question about Antiphospholipid syndrome/cardiolipin
by rjkte, Feb 14, 2006 12:00AM
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.
Doctor's Answer
by Kevin Pho, MD, Feb 14, 2006 12:00AM
, Feb 14, 2006 12:00AM
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
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
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