UPDATE - Lupus Message Board

SailormoonK · 06-27-2001, 08:17 AM

i saw my rhuemetologist yesterday, i have mixed news. one of my tests came back positive a test for APS, it is something common in lupus patients, but can be found in patients without lupus. right now we have no clue if it is caused by another autoimmune disease, but i start treatment this morning on plaquenil. so no matter if i have another autoimmune disease or not i will recieve treatment for the one i tested positive on. this is great news. but my exrays on my lower back showed changes in my spine, this means that eventually i will have to have iunjections into my spin just to be able to stand or walk. but for now nothing needs be done except being careful. hope all of you are well.

SusanM · 06-27-2001, 12:33 PM

Is the medication they gave you an antimalarial? I've read a little about this class of meds and I was wondering if that's what it is? Let us know how it helps. Did your other tests come back negative? Was the positive test for antiphospholipid antibodies or something more than that? Good Luck.

SailormoonK · 06-27-2001, 01:01 PM

The medicine is an anti malarial. i am unsure exactly which test came back positive, i was kind of confussed and didnt see the test results myself. the other specific tests came back normal and my blood work cbc ect.. looked pretty normal according to my doctor. i will not know for a while if the med will work- can take 2-6 months. but will keep everyone updated. there are more tests for antiphospholipid antibodies than i can recall. and so many different types of them that i could scream after reading my information sheets. i do know my circulation is affected by aps and pretty badly from what i can gather. will let everyone know what happens as i go. i see the dr again in sept. unless there is a prob.

Ann S · 06-28-2001, 08:47 AM

Kaitlin,
What kind of circulation problems does the pos APS bring on? I have severe circulation problems in my hands.....they dx Raynauds, carpal tunnel, rheumatoid arthritis, light Lupus, but that still didn't explain the severity of problems. Then they found that I also have vascular occlusion (narrowing or blockage of the vessels) in my palms. The Dr. felt that possibly a combination of all these things, including the inflamation from some of these, could be what's making it so bad. Great theory, but no one has given me anything, or suggested anything to help! I was put on adalat (calcium channel blocker to improve blood flow) months ago for the Raynauds but I didn't see any improvement. Any info would be appreciated, Ann

SailormoonK · 06-28-2001, 10:59 AM

AnnS
I know that my hands turn funny colors even without tempature changes now, my organs, muscles and such have a blood and oxygen supply problem. APS basically makes the blood more prone to clot and attacks the vessels, veins, arteries and capillaries. it also attacks certain cells in the blood itself, platelets is one i cant recall the others. i do know that i am short of breath, dizzy, have vision black outs, migraines, and several other serious problems caused by this. it can cause anemia, blood clots, heart attacks, strokes, pulminary embolism, and a bunch of other serious problems. it also can cause miscarriage, interuterine growth retardation, preterm birth, and fetal death and death in the neonatal period if untreated. there are several good sites, i found them using msn's search function. but very little actuall information is given. this disease is common from what i hear up to 80% of lupus patients can have it, but only 50% of APS patients have lupus. so i have a 50/50 chance of later being diagnosed with lupus. i take baby asprin and plaquelin for this, started out at 400 mg a day (which it will take 3 wks to get up to), rather than the 200mg that several mctd and lupus patients i know take. i know prednisone is used for it in mild cases, and blood thinners such as commadin (sp) are used as well. i know most of my info from the patient handouts my rhuemy gave me. so some of this may not be on the sites available. i would suggest asking your doctor to test you for anticardiolipids, and all the other tests to etermine the presence of aps which is also called hughes disease/syndrome after the doctor who discovered it. it is possible that this is your problem, because it can cause vein, arterie and capillary blockages. check on it right away because it can be life threatening.