Higher INR = better control??

[new2aps]

Does anyone have any clinical info that supports better outcomes (less clotting, less brain fog, feel better) with higher INRs? I see consistent posting that INR's of 3.0 or as high as 4.5 with better results. I feel my INR should be higher, but need to bring the support to the PA who manages my INR and coumadin dose. Thank you.

[KerryA]

I tend to feel better, eg. less brain fogg if INR higher part of my range of 3 to 4

[Lure2]

Hi 2newAPS,

First of all you should have a Specialist of autoimmun illnesses who is knowledable with APS and who works with people like us every day. There are very few of them but so exstremely important to have.

Read also as much as you can to learn as much as possible about this illness. There is a good book about APS you should get; Sticky blood explained by Kay Thackray. She has got this illness herself and explaines her nerurolgical symptoms she has had like I also have had here in Sweden.

Yes some of us need a higher INR. For example me as I am triple positive with very high titres all the time. You can not test Lupus Anticoagulant as you are now on Warfarin.

My Hematologist wants me on an INR between 3.5 - 4.0. I selftest and take a double test at the hospital lab to always know that the fingerpricktest and the veintest has got the same INR. The veintest is always the correct one but sometimes it can differ quite a bit between the two bloodtests. Important for the Specialist and also for you to know.

Warfarin has been my lifesaver but only when I have reached the correct number that is. I can feel it myself when the INR is too low. Then I can also take a Fragminshot when it gets under an INR of 3.5. I also had very high bloodpressure before I was correctly anticoagulated but with bloodpressure drugs and Warfarin it is now ok. The heartspecialist also likes my INR at 4.0.

[HollyHeski Administrator]

Have a look at this website - relates to Prof Hughes, where originally Hughes syndrome was established, now called APS.

I am under St Thomas's, when on warfarin my range was set between 3-4.

ghicworld.org/hughes-syndrome/

[GinaD]

One caveat regarding high INR treatment: Most doctors have seen disastrous bleeds in patients on warfarin. That means they are very reluctant to prescribe warfarin or recommend a high INR for that reason. BUT. Those patients who bleed out on warfarin are almost always patients who are taking warfarin because they have a sticky spot in their circulatory system -such as a heart stent. But we have sticky circulatory systems. Not sticky spots, but sticky everywheres! and prone to many, random clots. For us, a high INR causes our blood clotting factors to be more normal with less random clots. And exactly which INR number represents patient's best range depends on individual rheumatology factors. Triple positives usually require higher INR. Studies on APS factors progress, but it is complicated. Once I required an INR of over 3 to avoid clots. Then I accidentally found I am gluten sensitive. Since going gluten free my therapeutic INR is now 1.5-2.5. Symptom similarities between APS and Covid has lead to more research and understanding. Stay tuned!

[MaryF Administrator]

Hi the setting of your personal INR target is determined by your own case with the help and expertise of a specialist, some are not fully aware of a higher INR, so for some it is a new thing, but work with your doctor regarding your symptoms to get yourself the best and safest outcome. MaryF