Sticky Blood-Hughes Syndrome Support

Questioning correct medication

I was diagnosed with APS about 10 years ago by my Rheumatologist who took a history on me at our first visit. With my menstrual history pregnancy problems and the fact that I have SLE he tested me for APS. I did test positive for APS Lupus Anticoagulant and Factor IV and was tested again at a later date again tested positive. He started me on a baby aspirin, but not long after switched me to 325mg aspirin. In February of this year they scheduled me for an MRI with contrast of the brain and the inner ear because in December 2013 I had gone deaf in my left ear over night. This did show that I have had at least 2 mild strokes in the past 2 years. This summer I had a total knee replacement and after the surgery I had 24 days of Lovenox and I did feel better during this period and one thing that was not as bad was my double vision. Now that I am back on my regular aspirin daily my double vision has gotten worse and I have it almost all of the time not just when I start to tire. Now the doctor is talking putting me on Lovenox permanently. I guess my question is should I question this further with him. He does know about APS but is not that knowledgeable. I live in the County in the USA and am about 20 miles (1/2 hour drive) to the nearest place to get my INR tested for Coumadin, so he thinks this might cause a problem. I go back to see him and also my neurologist on Friday and am having trouble trying to research which of these drugs would be best. Any opinions would be appreciated.


4 Replies

I have been on Lovenox since mid-2008 without a problem. Before then, I was on Warfarin for about ten years (until the hematologist couldn't maintain my INR in an acceptable range). However, everyone is different. I would suggest you follow your doctor's advice. If that presents a problem, then consider seeking advice from another doctor.


What state are you in? APS Action has a list of APS experienced doctors in the US. Moving to a new doc will require 2 or 3 visits and follow ups, but after that, only once or twice a year. And any blood tests you may need, ( warfarin only - the injectibles are prescribed by body weight with a much more predictable, and steady, effect,) can be done locally through your GP or local rheumatologist.

Good luck!

Gina in West Virginia


I am in upstate NY in a rural area. This is part of the problem because my driving is limited and at the present time not driving at all. My husbands driving is limited also, so we depend a lot on my brother, but he lives 45 min. further North. Thanks for your info. If I do Lovenox I will be giving myself the shots and a nurse at the doctors office will be training me.


I am glad to hear that your history has been taken so seriously and you are being looked at so carefully, any fine tuning will require localized knowledge and also team work between you and the doctors and of course some people self test with a machine between visits to the INR clinic. I notice Gina below is giving you some good advice. There are plenty of people in the USA on this forum. Keep us posted with your progress. MaryF


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