Headaches · INR · Lupus

The INR dance.

For my fellow loopies that don’t have clotting issues or APS… After my initial blood clot and because of several episodes before that, my doctors determined that I needed to be on Coumadin (aka Warfarin) , a blood thinner, for an extended period of time. With most clotting episodes (those without autoimmune issues) the patient is kept on the meds for 3-6 months to allow the clot to dissolve. In my case it will probably be for life. So in comes the issue of monitoring – frankly, Coumadin is a poison that if left unmonitored can possibly cause life threatening problems such as hemorrhaging. But with regular monitoring – INR checkups – one could potentially be ok on it for life.

Insert monthly checkups here… That is if your INR is stable. Which – lucky me – mine is not. So because my body can’t seem to regulate the meds – my INR fluctuates and I have been going in for checkups every week or every other week. Not easy with a busy schedule like mine. Unfortunately monitoring INR isn’t as easy as monitoring a diabetics glucose – although the machines do look pretty similar and the method is the same, a finger prick. INR machines are still very expensive (talking a couple thousand).

Today’s INR was OK. The range for a person not on Coumadin can very but is usually around the 1 area (I think). The range for a person on Coumadin therapy is between 2 and 3. My INR today was 2.1 – just barely in the range. Personally I feel better when it is closer to 3, less headaches, less tingling sensations in my legs, less lupus fog. But getting my doctor to agree/be comfortable at the level has been a battle.

Is anyone else reading this on Coumadin therapy? What does your INR normally run? And do you feel better/more comfortable at higher levels too?

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3 thoughts on “The INR dance.

  1. I’m the lupus patient in my house and don’t have any issues with my INR levels, but my husband has the hereditary Leiden V gene mutation that causes lifetime clotting tendencies. He is on permanent Coumadin therapy, but hates the side effects, headache, etc. that go with “therapeutic” Coumadin levels.

    His doctor prescribed a home PT/INR machine that works similar to diabetic insulin monitors. He had a hard time following through on the frequent lab tests the hematologist asked for. Is that an option for you?

    1. I’m not sure that it is – I’ve looked at the cost, and honestly I’m not sure that my insurance will cover it. Which I don’t understand why – if I am a lifetime Coumadin user then it makes more sense to purchase a machine to do it myself then going to the doctor every other week.

      Also, I’m not sure that my doctor would recommend it at this point. Since my INR has been pretty unstable at this point.

      I’ll do a little more research and see what I can find out – Thanks for the feedback, so far the only people I’ve known to have personal PT/INR machines are from the UK.

  2. Hi. I have APS and I’m on coumadin for life as well. My INR is not stable either. A APS/Lupus specialist I saw wants my INR to be closer to a 2. My Primary doctor who does my INR (I do finger prick too) said anywhere btwn a 2-3 is good but now she agrees to have it closer to a 2. But for the last couple months my INR is staying around 3. Not bad…..but not where the doctors want it. It’s really frustrating going to the doctor all the time. I know how you feel. *hugs*

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