INR Crashing: My self checker showed me... - Hughes Syndrome A...

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INR Crashing

Morganslone profile image
23 Replies

My self checker showed me at 2.8 Thursday night, which means it was actually 2.3. They increased my warfrin to 10mg a day Friday, (so I'm one increased dose in, and today my INR is 2.2 meaning its 1.7. I called the emergency line and they have suggested I supplement with aspirin tonight every 4 hours and test tomorrow. If i have dropped lower tomorrow or not improved they will look into Heparin or Lovenox for Sunday and Monday.

Im worried thr aspirin won't be enough.

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Morganslone profile image
Morganslone
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23 Replies
Wittycjt profile image
Wittycjt

You said they increased warfarin to 10mg what was it before and how often?

Morganslone profile image
Morganslone in reply toWittycjt

They increased me Friday morning, so yesterday, and I am supposed to take 10mg until Wed when I go in for a venous draw where we determine if that is my new dose or this is a blip in what has been two years of steady INRs. I started hydroxychloroquine on Monday, which is the only change.

daisyd profile image
daisyd

Had your clinic not given you some Clexane to give yourself if your INR is below 3.0 I would ask for this incase it happens again, Asprin every 4 hours until the morning if it were me I would be reassured with that, but would test again early in the am if you are still worried I would phone them back and tell them

Morganslone profile image
Morganslone

My hematologist monitors my INR directly because the clinic isnt response enough. She set my range at 2.5-3.0 and we had an appointment this Wed. For me to present the recommendation from my rheumatologist to increase me to between 3 and 4. She is a small office that covers hematology and oncology so ita a direct dial to a nurse. All of the clinics near me, that I have been able to find have answering services.

My husband just reminded me that I was wrong. The first part of allergy season last year my INR tanked for 2 weeks as well. Every other draw I've been steady between 2.6 and 3.

Morganslone profile image
Morganslone

Ah had to look it up, Clexane is Lovenox in the US. That is what they are going to give me of I haven't started to climb by tomorrow. I see my hematologist once a month for monthly draws unless I fell off, start a new med, any real changes, and then I see her every week.

Tim_Thorpe profile image
Tim_Thorpe in reply toMorganslone

I had a stroke my Range is 3.5 to 4.5 when my INR Go's below 3 I take fragmine injections until my inr comes up

What has your aps syndrome caused you have you ever had a stroke etc ??

Morganslone profile image
Morganslone in reply toTim_Thorpe

2 DVTs. One in each leg from ankle to inner thigh. One in my arm, multiple Pulmonary embolisms. All in the same week when an undiagnosed uterine fibroid was causing me to hemorrhage. My CBC at that time was 4.9 instead of 12 where it should be

CormorantWatcher profile image
CormorantWatcher

Warfarin takes an age to "build up" and isn't the most stable to make changes. I used to find INR readings could be affected by diet, illness (colds etc) and any gastro issues (constipation or diarrhoea). In fact, it could be affected by almost anything and then it would take a while to get me therapeutic again.

Since switching to Rivaroxaban, I have to trust the science - there are no checks!!

Lure2 profile image
Lure2

Hi,

Tim Thorpe has an ideal treatment.

Probably the Hydrocloroquine you started last monday which made your INR upset. Good that you selftest. Do not eat any green vegetables these days when you want your INR to raise.

Test often and make notes.

Ask for Clexane (Lovenox) when INR too low as Daisyd said.

You should not be too low in INR with your family-history of clots etc. Ask for a higher INR than 2.5 - 3.0 as your Doctor has put you on! Perhaps she has your bleeding in mind so in that case ask if you could have Lovenox to try instead of Warfarin for some time at least.

Keep well!

BarbaraW profile image
BarbaraW

Why the .5 difference between your reading and what you say your actual numbers are?

Morganslone profile image
Morganslone in reply toBarbaraW

INR self checkers are a finger prick while the INR venous draw is from the vein. My tester consistently places me .5 higher

Lure2 profile image
Lure2 in reply toBarbaraW

Hi Barbara,

If you selftest or test in the finger instead of in the vein at a lab for some of us there is a difference between the two testmethods. I am Lupus Anticoagulant and selftest and for us the readings can be false. I have a difference between 0,8 - 1.2 for example. The higher INR - the bigger difference between the two. If they test you in the finger at the coagulation clinic it can be a false reading perhaps Not for everyone but the clinic does not always know about Hughes Syndrome and how we work. You have to find out for yourself.

Best wishes from Kerstin in Stockholm

BarbaraW profile image
BarbaraW in reply toLure2

Thank you for the reply. I questioned it because I have self-tested for 5 or 6 years, and when once a year or so, tested at a lab for a check on the machine reliability, the results were usually very close.

Lure2 profile image
Lure2 in reply toBarbaraW

Hi Barbara,

Here I have still to do doubletests at the hospital-lab every second or third month and when I started selftesting I did it very often. I have selftested 5 years now.

When I start a new package of teststrips I always do a double-test to see if there is any difference between the last package-number and and the number of the new package.

This week there was a difference between the two packages (they had different numbers) with an INR of 0,4. More than usual. The hospital have suggested as when I change packages especially with a NEW number on the new package that i should visit the hospital lab for a doubletest in the vein also. I do that not very often.

I feel very safe with my selftesting even if there are differences. But as i told you I am Lupus Anticoagulant. Also I have a Heparinshot to take when too low in INR (very important) and then I usually get symptoms also. I test every second day.

Kerstin

Morganslone profile image
Morganslone

I stay on allergy meds year round due to my allergies and my tendency towards headaches. So they aren't a new introduction. But my allergies are worse this time of year because everything is in bloom.

Morganslone profile image
Morganslone

Update: (A happy one) I am up to 2.4 as of my test just now. (2.9 on the meter) I will test again in the morning to confirm that I am still increasing. Hopefully I just need to keep my dose at 10 mg.

blizzard2014 profile image
blizzard2014

I'm currently having the same problem. I woke up a week ago with a headache, blood pounding in my neck, and my good leg was going numb and falling asleep in bed. My arms and hands were also starting to tingle and fall asleep. My INR was 2.5. I upped my warfarin and my INR went to 3.3. Then a few days later I tested it again because I was feeling unwell again and it was back down to 2.6. Now after taking a lot of warfarin it has gone back down to 2.9. I know these are good INRs for non-APS patients, but not for us. So I'm switching to 10 mgs of Warfarin a day and I will retest in a week. Having a home-tester is great because now I know when my INR is low, because I do not feel well. Then I can validate the low INR with the test meter and take swift corrective action. I just don't have to option of injections whenever my INR is below a 3.0, as my doctors do not understand this disease very well. I also have baby aspirin for when my INR goes too low and I feel like I need it. I do not take it every day. I just feel so unwell this week like something is flaring up, maybe my antibody levels are climbing again. I wish I had some injections. One day I will have better medical support. All I can do now is maintain as high of an INR as I can and hope for the best. I hope your INR continues to climb higher. Hang in there. We all have wonky INR's from time to time.

blizzard2014 profile image
blizzard2014

It was mostly chest pains on my left side that prompted me to do another spot INR check today which it is 2.9. I always get bad chest pains whenever my INR is under a 2.5. But now it seems to be happening whenever my INR is below a 3.0.

Lure2 profile image
Lure2 in reply toblizzard2014

Hi blizzard,

You should not have chestpain!

Ask for a Heparin-shot to take when the INR is below 3.0. Try to have an INR around 4.0. Is the machine-value the same as the vein-test value at the hospital lab or is it any difference? Do you have Lupus Anticoagulant positive?

Baby-Aspirin does not help when the INR is too low. Then you need more severe anticoagulation and the Aspirin is an antiplatedrug and not anticoagulation.

Kerstin

blizzard2014 profile image
blizzard2014 in reply toLure2

My INR on the machine is always within .2 of the labs. Last time it was spot on. I will be getting a lab test next week when I see my pain doctor and match it again with the machine. My body is acting weird. Also my blood sugar is back to normal and I don't have to use insulin this week. It's like something in my body is speeding up and causing me to process the warfarin faster. It's very strange. I will be re-testing in a few days at home and then again next week at the labs just to make sure nothing is off here. I think my INR is getting better today though, because I feel much better. I just never had it crash and continue to crash despite taking higher doses.

Lure2 profile image
Lure2 in reply toblizzard2014

Good! Try to test though more often than once a week. My eldest daughter has type 1 Diabetes but I do not understand that illness. I wonder if you could stop the Insulin just like that!?

If you stop the Insulin it could affect on the Warfarin INR or .....?

Take good care

Kerstin

blizzard2014 profile image
blizzard2014 in reply toLure2

Maybe the Insulin does mess with INR. I am a Type 2 but use insulin to keep my numbers under control. I eat normal foods and just use insulin to take care of the blood sugar spikes. I don't like salads and veggies lol. Yeah, you can stop insulin unless you are a Type 1 in which your sugars will go to high and you can die after a couple of days.

Lure2 profile image
Lure2 in reply toblizzard2014

Does Insulin mess with the Warfarin INR? I guess it does.

Kerstin

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