VIA Hughes Syndrome Foundation - INR Debate

[MaryF]

The debate over INR ranges for APS patients is still going on. In this article, the doctors question the wisdom of having such a low range (between 2.0-3.0) for people with APS who have had a stroke. Do you have difficulty persuading your anticoagulation clinic to keep a higher range?

ncbi.nlm.nih.gov/pubmed/246...

[bevjane74]

I haven't had a stroke I had dvt but when I first was diagnosed the anti coagulation nurses dealing with my care said if I did have aps that my inr would have to be higher the inr doctors said the same yet the haemotologist is quite happy leaving my inr at 2-3, to say I'm confused is an understatement lol

[grammy4him]

For 10 years my husband's Dr. Wanted his INR between 2-3..... until he had his second stroke. He then did more research on APS and agreed it now should be closer to 3.5.

[Stella]

my INR is set at 3.5 to 4 by the haematologists at St Thomas's. I never had any problems with this from my GP but when I attended the local hospital clinic they were most unhappy. I now test at home with my Dr's blessing and attend St Thomas's every six months. I would be extremely unwell on such a low number. I have sustained mild brain damage as a result of not having enough anticoagulation in the past, so can't stress the importance enough.

[bexter0021]

I had two TIA's approx 9 yrs ago and my levels are set to 2-3. I too have always thought an INR of 3-4 was more necessary for APS patients like me...

[Lure2]

Thank you Mary!

Kerstin in Stockholm

[stillwaiting]

"They" want me off warfarin because I have "only" lost babies, memory and speech and do not have a proven clot even though TIA's are suspected. However my rheumatologist wants me to stay on warfarin. As a compromise I have agreed to try for a "lower therapeutic dose". So my target is 2.5. But I have plummetted to 2 and feel dreadful - my memory is so bad remembering things like my middle name is a challenge (I was filling out a form) and my speech is slurred again. I despair.

Lynn.x

[Zezes-nan]

My range is 2-3 and the haematologist seems happy but I do wonder if it could be slightly higher as I struggle to keep it in range