Dropping INR

[Greenmil3]

Been on Warfarin and stable for months since diagnosis and now for no reason i.e. no diet changes no lifestyle changes but last self test had dropped to 2.0 last week so upped my warfarin and tested again tonight and down to 1.6! So increased my Warfarin again to 10mg to get it back up to 3 a little quickly wondered why I had been feeling so off and screwing up my words all week! Anyone any ideas why it’s dropped off after so much stability for no reason?

[MaryF Administrator]

Hi, the INR can drop for a variety of reasons, medication, virus, diet etc, but it is very important you check in with your GP and ultimately with the consultant who prescribed this for you as if it keeps happening, as you may need the additional support of possible additional medication. This may settle down as quickly as it started, but if I were you I would be seeking medical advice. Please keep a very close eye on this. MaryF

[WendyWoo50]

Sorry to hear that. My INR constantly rises and drops. It makes me feel terrible namely migraines muscle pains and micro clots.

Recently I’ve dropped, which I put down to a cold.

I love celery but one stick and I crash. Always. It’s a red flag 🚩 food for me. Maybe you have one?

Do you have any infection? When I had an infected boil my INR shot up!

Have you had any alcohol? Sometimes if I have a drink my INR drops and sometimes it goes up?

It’s a minefield. Specially if like me, you are lupus anticoagulant positive. I believe it’s renowned for its instability if INR.

Hope this helps. Good luck 💋

[silemoran in reply to WendyWoo50]

I get the very same way have lupus anticoagulant too.

[Greenmil3]

Thanks for that I have cerebral APS so I can’t even remember what I was positive for!

[Lure2]

You know I hope that you know that it takes some time for the Warfarin to work. It may take 2-3 days to lower the INR for ex. Do you monitor your INR without the help of a Doctor?

[Greenmil3 in reply to Lure2]

Yes I self monitor had been reduced to one check every 4 weeks as I was stable checked at the usual time and was down to 2 so increased the warfarin and INR dropped to 1.6 and I feel like pants!

[Lure2 in reply to Greenmil3]

How often do you go to the lab for a vein-test? Do you selftest only every 4 week?

You must tell the Doctor who is responsible for your anticoagulation about your situation. I have also cerebral issues when my INR is too low and then my memory is a catastrophe. Feel best at 4.0. What is your therapeutic INR-range set at? We usually need an INR between 3.5 - 4.0 to feel ok without symptoms. With an INR of 1.6 you are practically not anticoagulated at all!

Please take contact with your Doctor today!

[Ray46]

My INR is relatively stable, but sometimes it does change a lot for no apparent reason. It isn't just "diet" or "life style", it can be "did you eat meals at the same time this week as last week" illness (even very minor) or changes in the weather or maybe the moon... Basically there are so many variables it isn't possible to track or correlate them all and you may never get enough data to work it out. A few things like spinach/other vitk foods or alcohol consumption are easy to test and work out the effect on you, but that still leaves many many unknowns.

When changing dose, our reaction tends to differ from "standard" - my reaction to a dose change is up to double what the clinic expects as standard. Dose changes also take up to a week to fully take effect - and that is for a one-off change (and back to usual dose) a change in daily dose takes weeks to have full effect and stabilise (for me).

If my INR is heading downwards, it takes several days for a dose increase to reverse that, which means it _will_ go lower before it comes back up, similarly if it's heading upwards it _will_ go higher after dose reduction before it comes down. I think it is important to consider not just what your INR is but also what it is doing, 2.3 heading down is a lot different to 2.3 heading up (if range is 2-3), to me. I find the clinic seems to view anything in-range as "no change needed", which is frustrating, if I am 2.3 and going down fast I want the dose increase _now_, not wait until I've gone low - but that isn't the way they work. In reality if I'm 2.3 and going down I will typically get (very slightly) drunk, and ditch all green veg for a couple of days, usually works (for me)...

[Greenmil3 in reply to Ray46]

Ray thanks for that makes a little more sense.

[Lure2]

I wonder how you feel today?

Worried for you as I feel you have not control of your APS. Have you checked in with your GP or the Consultant who prescribed the Warfarin, as Mary suggested earlier?

Please let us know how you are?

Kerstin in Stockholm

[Greenmil3]

Lure thanks for the concern I self test and was trying to obtain approval for self medication but it takes my GP so long! So have adjusted my dose and feeling a lot better I will self test again this week see where I am at. If I go too high I get instant affects on my face so not too concerned about going too high. The professor who put me on warfarin set me at a typical 2.0-3.0 but have had a further test recently that showed decline in my cognitive and memory so getting a further appointment at my neurologist to try and get another MRI to see if my white matter lesions have increased (I.e. my brain now looks like a 90 year olds instead of the 75 year olds previously!) then I can go back to the professor with these results and hopefully get my INR range up to 3.0-4.0 as I feel so much better when it’s higher! But there is also the concern that other things are going on so looking to get tested for sjrogens as well as my decline continues despite all the medication I am on!

[KellyInTexas Administrator in reply to Greenmil3]

Hello Gm3,

I just went back and read your history and my initial conversation with you to refresh my memory.

You say in your initial conversations you seem to feel ok at around 2.6-3.0.

I have to think that your brain may not agree with you, as evidenced by an increase of worrying white dots!

Are you experiencing being off balance with the lower than normal inr? Vertigo? Migraine? ( I must admit I have never heard the term , “ I feel like pants!” before but I’m thinking it must not feel very good at all...)

I have to wonder if perhaps you might need an INR of 3.5-4.0.

I mentioned to you last time Professor Paul Holmes, London Neurologist. I also expressed my concerns of my limitations to you of myself, being foreign, that i may not fully appreciate the complexity involved for you personally and your situation getting a consult privately and then shifting over to the NHS as one of one of his patients. I do know he does this whith several of his patients.

I hope you find success with your current neurologist, but I do have concerns, as you are progressing as evidenced by an acceleration of White matter lesions on the brain with a known INR that is too low for this disease. See what your current neurologist thinks.

In my opinion, it is worth getting the input of an APS Specialist Neurologist who works with patients day in and day out just as yourself.

[Greenmil3 in reply to KellyInTexas]

Kelly I really appreciate your concern and input and if I get nowhere with my current neurologist then I will take your advice and contact your suggestion in the hopes that one private appointment will be enough to get me on his NHS list. Once again thank you.

[Lure2]

Yes we need a Specialist of autoimmun illnesses (often a Rheumatologist or a Hematologist. ) We have found here that some Neurologists do not get that we have too sticky blood and that is the reason we feel like "pants". For ex APS and MS can look very much alike and can be misdiagnosed, but still they find people with both MS and APS but it is very rare.

As you also talk about Sjögrens it could be a Rheumatologist you need and an eye-Oftomologist. As these autoimmun illnesses are very difficult to treat correctly and to diagnose we do need a Specialist.

Specialist and Anticoagulation are the two main things for us.

You say you get "affects on your face" when INR too high. Never heard about that. I wonder if you are positive to Lupus Anticoagulant as in that case the fingerprick-value can differ a lot to the vein-value at a lab which is the correct INR-value to trust. Do not forget to double-test within a 4 hours time with a vein-test at a lab to see if there is a different between the two values (fingerprick - vein-value at a lab).

Try drops for dry eyes.