I would like to know if anyone out there has been on Coumadin/Lovenox therapy for treatment of a mild stroke?

Question

I was 6 weeks post-partum when I found out after having a stroke that I have a blood disorder in which the antibodies in the blood tend to clot my blood (Lupus-anticoagulant). I have been on Coumadin/Lovenox therapy for 1 1/2 months now and cannot reach a recommended PT/INR level between 2 and 3. Until my weekly pricks to check these levels is at this number, I must continue the Lovenox injections as a safety precaution because the Coumadin is not working well. I am now taking 12.5 mg ( I was on 10mg) a day. I guess you can say I'm frustrated because when I initially started this therapy I was told that I should be at the recommended level in about a week . Now at 1 1/2 months later I feel like a guinea pig trying a high dose(not helping) so now a higher dose (let's see how your body accepts it at this dose). I've kept up with the diet guidelines and really feel this is not the problem.

If anyone knows about what I'm talking about please respond.

Answer 1

Yes, and I have Antiphospholipid Antibody Syndrome (APS). The same disease that you have.

You may be Coumadin resistent. But also there is a lot of information that the finger prick machines are not accruate for APS patients. They all carry disclaimers on them. So you may want your doctor to do a vein draw to compare them. Are you seeing a hematologist? They may want to do a Factor X essay and compare that to your INR/PT

Typically most patients are kept at an INR of 3-4 with this disease. My INRs are hard to regulate. That is just part of APS. And since you are a woman, our hormones also play a role. Actaully, in the post partum period with the disease you are at some of the highest risk of clotting of than the pregnancy itself.

Here is a wonderful beginners guide to APS: http://www.apsfa.org/newlydx.htm. Here is some basic information on APS: http://www.apsfa.org/aps.htm

My INR is kept at 3.5-4.5 plus I take aspirin because APS can cause both venous and arterial clotting. I am also on Plaquenil. Do you keep a INR log book and medical symptoms journal? It is amazing the patterns we can find.

There is a non-profit organization in the US that can help you. There name is APS Foundation of America, Inc. Their link is below.

Good Luck!

Answer 2

Yes.I do somehow know your case ( we do the blood sample taking then processing it in the machine that will read the PT/INR of your blood ). You see, your case is mostly serological..meaning Lupus-anticoagulant is a problem with an antibody having to go against your blood clotting system.The role of your coumadin now is not to kill the Lupus anticoagulant but to have the normal blood function.. that is to make the blood not to clot as much as you do because this will cause thrombosis (clot that clogs your veins) the is why mild strokes happen.The right dose has to be achieved because the doctors don't want to make your blood too watery because it will cause bleeding tendencies.On the other hand if the dose is too strong then it will greater risk for thrombi that may lead to death.. (God forbid )Be patient..it is not that you are being experimented but you see the case is also difficult for clinicians. I myself..have encountered patients who have to undergo repeat prick test to determine also their bleeding and clotting time. Hope this helps.God bless

Answer 3

i too have started the coumadin "program" and have been on it for about 45 days. i started getting pricked every 2 to 3 days and am now up to every 2 weeks so hang in there you are not alone and sooner or later things will fall into place. my protime was 2.4 last week so it will work.

Answer 4

please, try not to get frustrated. i know it's hard, but once your doctor get's you leveled out you will feel so much better. medication is all trial and error. especially when it's coumadin. it just surprises me that he hasn't got you leveled yet. are you going to a heart doctor or your general doctor. please go to a specialist.