Hi again,
Ok, now I'm really confused!!! :lol:
If I understand correctly, three years ago you had a stroke which the docs said was vascular in nature and not due to a clot. You didn't have an aps diagnosis yet then if I'm getting this right, but the docs put you on plavix and aspirin even though you say the stroke wasn't due to a clot. You can maybe see why I'm confused a little bit. Since plavix and aspirin are both blood thinning meds could the stroke you had three years ago have been from aps, especially in light of your recent aps diagnosis; and could that diagnosis be the reason your doc now wants you to switch to coumadin now?
To put it a bit differently, if your stroke had nothing to do with clotting then your being on anti-clotting meds like aspirin and plavix doesn't make much sense. If on the other hand your stroke was a clotting one and that's why you went on the aspirin and plavix in the first place and now the aps tests are coming up positive it does make sense that your doc would want to switch you to coumadin as you would fall in the category of the aps patients who have had a clotting event and they are generally treated with coumadin. Did the docs have a theory at the time about what caused your stroke? I don't really know about what kind of things can cut off blow flow long enough to cause damage other than clots and aps unfortunately, but maybe some sort of vasculitis can do the same?? Or was the thought that it was due to something unrelated and non-autoimmune in nature?
Now, as far as the risks between clotting and coumadin go it does sound like that is something you need to discuss in detail with your doc. It's very, very good that you trust your doc implicitly and that he's helped you for these past 23 years; it means that you can sit down with him and relay your fears and worries about coumadin to him and then make an informed decision about it!! :bigsmile:
Personally (I have aps too) I am coumadin resistant and thus have to take heparin instead; I did however try coumadin for a while and had talked about it with my doc. From what I understand, if one measures their INR regularly and keeps their diet relatively stable (i.e. no radical changes in say the amount of dark, green vegetables one consumes from one week to the next etc), coumadin can be a very safe med to take.
You say you have ITP and white lesions on your brain; do you also have lupus? If so, are you on plaquenil? Plaquenil, which is a great baseline med for lupus, also has slight blood thinning properties and can help a great deal in aps patients as well (Coumadin or no coumadin!!). That might also be something you may need to talk about with your doc!
The Hughes syndrome foundation in the UK has a wealth of information about aps and aps treatments and so does the antiphospholipid foundation of america:
www.apsfa.org .
Re the report you talk about and the aspirin, do bear in mind when reading such reports on the net that there is a wealth of information out there and that different docs can have very different opinions on how to treat different disorders. APS specialists tend to give a baby aspirin (100 mg) a day and/or plavix to patients that have tested positive for aps on at least two different occasions six weeks apart, but that have had no clotting events and coumadin to aps patients who have had clotting events!
Re the hematologist; I don't know if a lot of people with aps from the forum see a hematologist, but generally aps specialists tend to be rheumatologists!! Is your doc a rheumatologist? If not, then maybe a rheumatologist specializing in aps would be helpful for a second opinion?
I do hope you get to the bottom of this soon!
Zoi