My doctor seems to have developed a curiousity about my APS. After arterial clot, kidney loss and initial positive aps tests, a year later I am testing negative. Mayo and Kaiser advising maybe I should stop taking warfarin. From my reading on this site I have skepticism swig he shared. They decided to do an angiogram and see if it looks like it was a clot or a dissection. The theory is that if it was a clot I should keep taking warfarin, and it was a dissection I should stop.
Anyone else have experience trying that?
Thanks!
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Blakerm
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I had a heart attack due to a blood clot, had an angiogram, no problems with my arteries at all. I don't know what they expected to see with anticoagulant's the clot should have ? Dissolved (not sure if that is the correct medical term)
Testing negative from a positive test doesn't mean you don't have APS. I would be very concerned if I was taken off Warfarin/ Clexane, I was actually on Asprin when I was taken ill.
I read that you have had positive Hughes Syndrome/APS-tests.
What Doctor, specialized in autoimmun illnesses like Hughes Syndrome, can say that you should stop Warfarin!?
I think you had better change your Specialist as probably he has not read enough about this rare rather new blood-disorder which so very few Doctors know and I doubt that he/she is a "Specialist" (which we must have).
Some of us have micro-emboli or clots not seen on a Scan and the antibodies can go up and down in periods and we are sometimes sero-negative. There is not yet any cure for our illness and we will have it for life. Never stop Anticoagulation.
I agree with my colleague Kerstin. You must be seen by a consultant experienced in APS/Hughes Syndrome. If you do have APS and have had clotting incidents it could well be dangerous to stop anticoagulation.
I agree with all of the above. I had a positive then some years later a negative test for APS. In between I had a Venus sinus thrombosis which put me on warfarin for life. My APS specialist said my negative test suggested it wasn't APS in the first place and discharged me. Fortunately my GP is more clued up and said once an APS sufferer always a sufferer! I too had an angiogram which showed no clots or problems but was to collate info on a hole in my heart (ASD) also common to those with APS. Because of the Venus clot I stay on warfarin. Ask for a second opinion you are entitled to it. There are many on here who tested negative but have APS. Good Luck.
Here is the frustrating part. I have had a second opinion and a 3rd. I even spent about $10,000 going outside my insurance plan to go to the best hospital. (Mayo Clinic in Rochester... who said they had a specialist that understood APS.
All have pointed to the 2 subsequent negative tests I had 12 weeks apart and explained the criteria.
What's very frustrating to me is this:
1) If the current criteria I known to be wrong, why dont they change it?
2) If Dr Hughes has a different criteria (aside from talking to an specialist) ... has he published it? Would it look like wat I am extrapolating from this group?? I.e. "One positive blood test combined with one clot event is criteria for lifelong warfarin"?? Or in your case... one positive blood test?
The info you get on this site from the team is the best. They will tell you that APS info is developing and growing all the time. I'm afraid I cannot help with systems in USA as I'm in U.K. even here where more doctors know about APS there is not always a definitive answer. Prof Hughes was not involved in my diagnosis. But there are links on this site to his blogs etc. Warfarin is prescribed lifelong for anyone who has a Venus thrombosis as I did irrespective of APS.
Well, I have received some very good and thoughtful answers on this site but... This question was about angiograms. I was wondering if someone had ever had one that revealed that they had a dissection and not a clot... and if this information would be a negative indication for APS. I didn't think I had asked that before. If I have then apologies...
dear Blakerm , I had an cardiac angiogram in July 2015 due to severe fatigue. Results were devastating. I had severe cardiac microclotting which caused severe permanent heart muscle damage. My ejection fraction was in the 20's. I am in heart failure management now. My major coronary arteries were clear of plaque. So bypass surgery not option.
Just 3-4 years previously my heart tested normal. I got a lot of damage in a short time.
I tested positive for APS in 1991 in Cleveland. Was not told to be retested periodically even tho had most APS symptoms. In 1996, put on Coumadin for OTHER clotting problems. My Lp(a) was elevated and I had the MTHFR gene and other clotting probs but negative for APS.
I also had microvascular clotting in my jawbone causing trigeminal neuralgia. My initial symptom in 1988.
The Coumadin helped the trigeminal neuralgia at an INR of 2.5. I did not know then that the continuation of other symptoms (especially daily headaches ) indicated my INR should be higher. Thanks to this forum I am working on increasing my INR to 3.5-4.0.
The angiogram has helped me receive the heart treatment I need. But it did not show dissection or anything else. Nancy
I reread your previous posts. I may have asked you before but here I go again; did you test positive to Lupus Anticoagulant twice or only once and anyway they gave you a diagnosed of Hughes Syndrome and put you on Warfarin. Is that correct? Have you got a paper from this time?
What INR are you on at present and do you selftest?
Had clot early last year in artery feeding kidney. It killed the kidney. In trying to determine cause, they gave me LA blood test panel. I tested positive. They diagnosed me with Hughes Syndrome. They put me on lovenox then transitioned to warfarin. They wanted INR of 2.5 to 3. I had weekly tests at hospital as they do not allow self testing for Hughes.
They then tested me for LA about 4 months later and I was negative, and all subsequent tests have been negative. They then said unsure of cause but decided not Hughes Syndrome as I never met criteria of two positives. They suggested I go to aspirin. Two other clinics have come to same conclusion.
Only other indicators are that My dad had Rheunetoid Arthritis... and I have tummy issues.
No idea if I should to aspirin or warfarin going forward. Doctor leaving choose up to me.
Thank you very much for taking the time to think through my situation. I think I will stay off Warfarin until after the angiogram Monday than ask to start back up at a moderate INR level.
It is your decision. You know that we shall not be without anticoagulation, not for a single day. Do you have to leave Warfarin when doing the angiogram?
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Anyone else have Low Factor VIII Levels???
Warfarin and Clopidogrel
I’m still not convinced
Confused & anxious about APS
