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Hughes Syndrome APS Forum

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Changing from Lovenox injections to Coumadin

kiminabmw profile image
15 Replies

Is there a standard INR for those on Coumadin/Warfarin? My nephew (CAPS survivor) is transitioning from Lovenox (been injecting twice daily for almost 2 years) to Coumadin starting this week. Dr. checked his baseline INR a couple days ago and it is 1. How do they determine where they want your INR to be once you are on Coumadin?

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kiminabmw
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15 Replies
HollyHeski profile image
HollyHeskiAdministrator

Usually the prescribing doctor sets a target, for APS patients without a clot history its between 2.5 - 3.0 , when I was on warfarin, being triple positive and having had 2 strokes my target was 3.5 - 4.5.A base reading of 1 is far too low to stop taking the heparin, usually they prescribe both until at least 2.5.

kiminabmw profile image
kiminabmw in reply to HollyHeski

Thank you Holly. My nephew will continue with the heparin, but I fear his Doctor has set his INR target range too low. She said between 2-2.5, but considering he is triple positive, had 2 strokes, CAPS, then bilateral pulmonary embolisms and a clot in his arm, all in the last 2 years. Maybe my nephew misunderstood the INR range, so he can double check that. (I just looked at the After Visit notes, and it says INR range is 2-2.5) His main Doctor is a Rheumatologist, but his Hematologist is handling the heparin to warfarin transition, and I'm not sure she's had anyone with my nephew's extensive history. Or it could be that he not only has an extensive clotting history, but his lungs have also hemorrhaged 3 times, May 2019, June 2019 and September 2019 and that might be the reasoning. Scares me!

MaryF profile image
MaryFAdministrator in reply to kiminabmw

Hi, it is really important to have a specialist/GP who fully understands how to prescribe for somebody with Hughes Syndrome/APS, especially with that history of CAPS. There are specialists listed on the GHIC website: ghicworld.org/ Also there will be people on this forum who will perhaps know doctors nearer to you. May be add to your post a question about that. I hope he continues to get better. MaryF

KellyInTexas profile image
KellyInTexasAdministrator in reply to MaryF

Thank you Mary- I have private messages her and we are in contact now. ( USA 🇺🇸 connections hoping to prevail )

kiminabmw profile image
kiminabmw in reply to MaryF

Thank you Mary. I have been in contact with KellyInTexas. He does have an excellent specialist in his Rheumatologist, but she isn't in charge of his blood thinner, that is the Hematologist. His Hematologist has many APS patients, and she was the one who originally diagnosed the APS in 2015. What complicates things is that he's had clotting events, but also had 3 Diffuse Alveolar Hemorrhaging events back in 2019. He had been doing well, since they stopped the Plasmapheresis in November 2020, and his blood work, hemoglobin, hematocrit and platelets have been stable for the last 6 months. He has been getting a CBC and CMP done weekly for 2 years, and while he's been on Lovenox he gets an AntiXa every other week. He's supposed to start 5mg of Coumadin/Warfarin this Thursday evening, and will continue with the Lovenox. He will go to the Lab on Sunday to check his INR.

KellyInTexas profile image
KellyInTexasAdministrator

ard.bmj.com/content/annrheu...

I hope this will help ...

Please come back with comments.

Jmiller623 profile image
Jmiller623 in reply to KellyInTexas

This is a really nice paper. Thanks for sharing Kelly! You always post things I wind up saving. My favorite was the APS/SLE % crossover/overlap figure/venn diagram and I still have that saved.

KellyInTexas profile image
KellyInTexasAdministrator in reply to Jmiller623

You are most welcome! All of us pitching in together- some of the info I share will be a miss- some a hit. I still think its “early days” in understanding APS... I really do.

Siobhan9 profile image
Siobhan9 in reply to KellyInTexas

Hi, thank you for this excellent article, it is very reassuring re warfarin , INR range etc.

KellyInTexas profile image
KellyInTexasAdministrator in reply to Siobhan9

You are welcome.

Jmiller623 profile image
Jmiller623

They usually start with an INR goal of 2-3 with a simple blood clot like a DVT or non life threatening pulmonary embolism. But with a history of CAPS, they may shoot for a higher INR. It’s certainly something that needs to be looked over by a good APS specialist. If a young boy, he’ll want to get rowdy so some may be hesitant to increase INR goal too high with bleeding risk. But in general, I’d guess they’ll shoot for somewhere between 2.5-3.5.

Also make sure his diet is consistent. Foods with vitamin K (leafy greens) can negate Coumadin action so just make sure he gets the same amount everyday to keep his INR from fluctuating too wildly.

Sorry he has to go through this. Sending hugs. ❤️xx

kiminabmw profile image
kiminabmw in reply to Jmiller623

Thank you!! One blessing is he has never liked or eaten lettuce/spinach/kale etc, nothing green or leafy ever. So his diet should be OK.

Agent-J profile image
Agent-J in reply to kiminabmw

check out inrtracker.com or any website that can tell you how much vit k is in a food. You may be surprised as you start where vit. k lurks! Additionally check foods for a reaction with warfarin. Cranberrys being a great example that they have no vit k but react with warfarin. discovering the hidden vit k made things much easier to manage for me.

GinaD profile image
GinaD

I dont wish to complicate things, but...Vitamin K is something your body needs. Warfarin dosage should be adjusted to accomodate a healthy diet, not vice versa. And yes, there are foods that will raise the INR, most notably ginger. And, we are all different and so process foods differently. My suggestion, ( which I got from my disgnosing hematologist,) is to keep a food, avtivities and IN.R journal. After a few months he will have memorized which goods and activities will have what effects, and can adjust diet accordingly. Complicated? Yes, but.... helpful to stay healthy.

kiminabmw profile image
kiminabmw in reply to GinaD

Thank you Gina, great suggestions. I know tons of people are on Warfarin, but my goodness it is so much more complicated than Heparin injections. I appreciate every tip/suggestion, which will hopefully make the transition a little bit easier. Thanks again.

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