Worried.......

[jeanietrawick]

I also suffer from Hughes syndrome/Aps , my question is I am taking 13mg of Coumadin daily my inr is usually anywhere between 2.5 and 3.0 but I still have Tia's very frequently . does anyone else have this problem ? and has any of your doctors told you why you still have them ?

[Manofmendip]

Hello Jeanie

Many APS/Hughes patients, me included when I was in Warfarin, (now on 15,000IU Fragmin shots), need to have an INR as high as 4.0 to feel reasonably well. I used to keep my INR between 3.8 & 4.2 and, if it dropped below 3.3 I used to take 5,000IU Fragmin shots and increased my Warfarin until my INR was back on target. Even so, I had clotting incidents when my INR was on target, one particularly bad clot in my right hip.

Best wishes.

Dave

[Lure2]

I agree with Dave!

Two things are important with APS: first to get a diagnose and then to get an Expert on this illness.

Only the APS-Specialist understands what to look for re symptoms (every organ in our body can be attacked by the antibodies) and he understands also at once that we have too thick blood that has to be properly tinned before we are safe from TIAs and other microembolies (tiny clots that are not usually seen on a Scan).

So try to get that APS-Specialist as soon as possible. You should not go with TIAs, especially when on Warfarin. I selftest with Warfarin here in Stockholm and have an therapeutic INR-level of 3.2 - 3.8 and feel best at 3.8!

Best wishes and stay on this site where you can get good info from our friendly and knowledable members.

Best wishes from Kerstin in Stockholm

[Lure2]

What symptoms do you have when you have your TIAs? How much Warfarin you take is not so important as it is individual from person to person, but the INR is important. My TIAs disappeared when I started Warfarin and I have had no microembolies as far as I know for 4 years.

I wonder if you have read "Sticky Blood Explained" by Kay Thackray? She has APS herself and writes about the different symptoms with this illness. The book is not quite new with the latest oral anticoagulants, but we still have those symptom she describes. I have it in pocket.

So few doctors understand APS and that we have too thick blood and do not usually bleed from it but clot very often. You should not have TIAs!

Kerstin

[shardavis3]

I can go from 1.8 to 5.7 in just three days just by my eating habits. Spinach, broccoli, salads and prednisone can make a big difference. I try to keep my inr at 3.8 to 4. But I know eating these foods will make me bottom out. I try to be consistent with my diet.

[Lure2 in reply to shardavis3]

I have always found it difficult to RAISE the INR like you do in 3 days. To get it down with 10 - 15 brouzelsprouts in 15 hours is easy for me.

I always eat some greens every day but the same amount if I do not want to change my INR if it is too high. I selftest every second day so I follow my INR carefully. I guess if you take different Prednisone different days it can make problems.

Best wishes from Kerstin in Stockholm