SLE and Antiphospholipid Syndrome

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ohmylife
New Member


Date Joined Nov 2011
Total Posts : 4
   Posted 11/23/2011 1:48 PM (GMT -6)   
I NEED HELP! I have lupus and antiphospholipid syndrome. I have never had a thrombotic event such as a stroke, heart attack, DVT or PE. I had a MRI that showed lesions on the brain which the doctors said were probably old clots. Despite not having an actual event, they want to take me off aspirin and put me on Coumadin. Has anybody out there gotten on coumadin to prevent a thrombotic event although being asymptomatic? Please help, I don't know what to do and need advice, I don't want to be overtreated and risk bleeding on coumadin nor do I want to have a stroke or embolism! THanks everyone!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/23/2011 2:08 PM (GMT -6)   
The medication is a preventative to keep from having a problem. If my doctor feels I was in danger of a stroke, I'd take the medicine.
My father and my brother-in-law have been on blood thinners for years. They only have to be careful of getting deep cuts.
Joy

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 11/23/2011 5:43 PM (GMT -6)   
Hi!
I have APS, too. This is a tough one. I am alittle uncomfortable with the "probably old clots" The word "probably" makes me hesitate especially in view of not having had a clot event? Did you have an MRI with injected contrast media? Could you get a 2nd opinion? and hand carry or have the MRI results emailed for a second look? Why did they do the MRI in the first place? How old are you? Coumadin is an old standard, but requires frequent blood tests to keep the dose correct, and isn't to be taken lightly. How high are your antiphospholipid antibody levels? What does your rheumy say? I'm sorry I asked more questions, I understand why you are asking. I am a nurse and I'd feel in the same place you are, caught between a rock and a hard place. If it were me, I would definately get a 2nd opinion, maybe even a repeat MRI, with contrast and find myself the newest, most up to date MRI scanner to have it in. I'd research the net and read every recent research article I could find. There are two kinds of strokes, from traveling clots, or hemorrhage. APS can cause one, Coumadin the other. Bottom line, is trusting our dr. to weigh the risks vs. the benefits on our behalf. Take care, I am sorry I couldn't help more,
hugs,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U, Calcium, Flector patch prn, Ambien and Elavil every night. Advair, Albuterol and DuoNeb inhalers.

ohmylife
New Member


Date Joined Nov 2011
Total Posts : 4
   Posted 11/23/2011 6:55 PM (GMT -6)   
Hi suetoo, thanks for the response. Yes, they did my MRI with contrast to rule out possible MS legions. My rheumatologist sent me for a  MRI because of my complaints of headaches, confusion, vertigo, etc. SLE can manifest in so many different ways. I also have seen a Dr. at the thrombosis clinic who gave me a second opinion and said the risk of a clotting event (5-30%) is higher than the risk of bleeding with Coumadin (less than 2%). My PCP was on the fence and said the white foci matter on my MRI could be anything, even past events of bumping my head. I do go to the finest hospital in my area (University of Utah) for all doctors and tests, they are the best in the area and everything is the latest technology. I am 41 and was diagnosed with SLE two years ago and I am on Plaquenil and Flexeril with intermittant use of Prednisone and Cellcept for flares. I am very confused because I am having a hard time finding any accurate and consistent statistics to guide me. I don't know how high my antiphospholipid antibodies are, I will find out and ask if that makes a difference. Thank you for your help.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 11/24/2011 8:21 AM (GMT -6)   
Hi!
Thanks for filling in the details, as a nurse I am reassured you are being treated with the best our healthcare system can offer. I am glad they gave you risk %s. Thats just what I would worry about. I am 56, and I lost 5 pregnancies to APS and so far I am good with aspirin. Ok, lets think together.... we are young to have a stroke, the odds with coumadin are in our favor. Even a small area of cerebral bleeding can cause paralysis on one side of our body, affect speech and gait.....they have invented nifty INR fingerstick machines to check clotting times every several days/as ordered at home when you take coumadin....dose adjustments are easy to make to decrease bleeding risk....and so that pts. take only the minimum of the drug they need for the target INR number.....ok, if you were my sister, (I am just pouring you a cup of coffee/tea) tongue I would think that I want you around for a long time to come, your drs. are going for the coumadin......there are going to be chances to reassess need, and other anticlotting meds are being developed....as it was explained to me, antiphospholipid antibodies are very large circulating antibodies that flowed around fine until they got to the microscopic blood vessels in my baby's placentas, plugged them up due to their lg. size and caused greater and greater areas of placenta to infarct. I imagine the same patho for other places, too. That said, sitting around the kitchen table together, I'm thinking I'd say go for the coumadin. It is really given alot, I know, especially in elders to treat a stroke. Please take a deep breath, sleep on it until Monday maybe?? and listen to your head telling you which plan, to take or not to take...that is the question...(I'm sorry, I couldn't resist saying that),
you can live with the easiest. Keep me posted,
Happy Thanksgiving
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U, Calcium, Flector patch prn, Ambien and Elavil every night. Advair, Albuterol and DuoNeb inhalers.
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