Low INR again

[amy1808]

Hi guys me again . INR still fluctuating gone from 4.1 ,3.7, 3.1 and now 2.6 this morning. Feel rough and worried . Still waiting for vein test . Thank gif I'm seeing Prof Haye next Monday . Think I might need Heparin as well 😐

[MaryF Administrator]

I am glad you have an appointment very soon, as clearly something is going on making things a bit unstable. So many things can cause this, but often difficult to work out what it is. Let us know what your professor has to say. MaryF

[Lure2]

Hi amy,

I hope you understood what Kelly and I explained about the double-testing before starting selftesting. Otherwise you do not know where you are.

Of course you should have LMWHeparin (Fragmin)-shot to take when INR is too low.

Hope you have a certified lab that can send the blood from your vein for testing quickly.

Why wait for a veintest till Monday? Take it today.

Kerstin

[amy1808 in reply to Lure2]

Not that easy in the UK . Have to do it through my GP . I'm seeing her after work today so hopefully get it done then but I wouldn't bet on it !!

[Yllek in reply to amy1808]

My gp gives me blood forms to keep at home and when I feel the need (to low / high on my machine) I go to the local blood room and have a vein draw on the same day. Could you work something out with your gp ?

[amy1808 in reply to Yllek]

Going tonight so I will ask the question x

[Tucson]

How often are you testing and how much are you adjusting your dose by when your Inr drops? The Inr's you've given cover how many days or weeks?

[amy1808 in reply to Tucson]

I test every other day so the above is for a week . I have a very bad chest at the moment and it has been building up for a few weeks so may be that has something to do with it x

[Tucson]

Ok so how much did you adjust your dose by when it dropped to 3.7 and how much did you increase your dose by when it dropped again and when it dropped for the third time?

Are you self managing or do you wait for the clinic to tell you how to adjust your dose?

[amy1808 in reply to Tucson]

Didn't adjust when it was 3.7 and I usually just add 1 mg to up it, my target is 3.5 -4

[Tucson]

So did you take an additional 1mg when it dropped to 3.1 ? and again when it dropped to 2.6?

[amy1808 in reply to Tucson]

Yes additional 1mg and one today

[Tucson]

Just wondering as I have a very narrow target of 4 - 4.5 and tbh if mine drops or goes above range I adjust immediately by 0.5mg as I found jumps of 1 mg in either direction sent my Inr a bit haywire. I've also been told by my specialist to never miss a dose no matter what. whereas when I was under the clinic they seemed to be forever skipping doses and raising them by too much at a time. Also if my Inr is above or below range I then test every day till it's back in range and then revert to twice a week. My only contact with the clinic now is via email once a week.

[KellyInTexas Administrator in reply to Tucson]

My specialist heme advises the exact same thing as Tucson's, Amy. Remember (I know you already know this but when you are feeling bad it's always good to have a reminder) ... you have to " future cast" with the warfarin. Two and three days out for the biggest effect.

( I always feel like a weather forecaster trying to predict my Coumadin needs two to three days in advance...

"Other factors include kale coming in from the North, a little antibiotics left over from last weeks urinary track infection disctubance in the southern region, which should clear on out by late Tuesday evening leaving us with clear skies and smooth sailing In that vascular system by Wednesday mid day. ")

😂😂😂

[amy1808 in reply to KellyInTexas]

😂😂😂😂

[Yllek in reply to amy1808]

How did you get on with your doctor? X

[amy1808 in reply to Yllek]

Brilliant thanks , she is doing a vein INR test every week until I am stable .

She gave me a good check up . I'm a woman of a certain age 🙈and hormones ,virus and APS don't mix well plus some of my medication can give me arrhythmia so she went through it all and made changes where she could . ECG and BP were normal but if it continues I will have to have 48 hour heart monitor on again x

[Yllek in reply to amy1808]

That’s great news, glad it was a positive appointment.

[Lure2 in reply to KellyInTexas]

I Kelly,

Your last sentence made me laugh!

I guess you must be the author, right?

Kerstin

[KellyInTexas Administrator in reply to Lure2]

Yes, only a crazy Texan. We are known for outrageous weather here...

"Watch out for those thrombotic storms, folks. We can't have any of those!"

[rlupus]

Hi your not alone this happens to me all the time and I never understand why but I am very complex person thankfully I have fantastic GP and consultants my is tested twice a week for life my INR range is 4.5/5 and it never seems to stay there its up and down all the time and has to be taken from my portacath as my veins are rubbish when I have a bad chest infection my INR goes very low and its normaly because I have antibiotics , other than that we don't why it goes up and down ,

hope you get sorted soon x

[Lure2 in reply to rlupus]

Hi,

You certainly have a very high therapeutic level of your INR with Warfarin.

I have not heard of anyone with a Specialist having their patient on an INR up to 5.0!

Do you have Lupus Anticoagulant as one of the antibodies they test to diagnose your HS/APS?

As it it taken from your partacath you do not have to have a fingerprick and wonder about the difference to a vein-test. How often do you test the INR? Twice a week even when it is not stable?

Best wishes from Kerstin in Stockholm

[rlupus]

yes they like like it 4.5/5 as I have had so many clots when it drops under 4! finger prick was out by whole numbers was done over a course of 3 weeks and every time a big difference hence I have portacth in . Yes I have lupus anticoagulant x

[Lure2 in reply to rlupus]

Hi rlupus,

I know you also have Lupus (SLE) but as to anticoagulation when you have HS/APS, selftesting is positive as you then can test as often you want and have to.

I have also Lupus Anticoagulant like you and selftest every second day, even every day when the INR is very unpredictable. I hope you can use your portacath that often to keep the INR stable. I do not know much about a portacath though and how it functions.

Kerstin in Stockholm