Erratic INR...

[Atkins106]

Just had my INR done, it’s been really erratic lately, was 5.6 last week and then 2.5 today.....my range is 3-4 missed injections by the skin of my teeth, as have them when under 2.5. Anyone else with APS have similar issues ? I also take clopidogrel when in range or under......😕

[WendyWoo50]

All the time. In fact I posted today. I actually made a graph and took it with me to the consultants. They gave me the option of clexane twice daily in stead of warfarin. I refused as I react badly to the injections at present my tummy is swollen and bruised. Not to mention painful. X

[KellyInTexas Administrator in reply to WendyWoo50]

Wendy,

I had a Phone consultation on dec 6 with my aps London Bridge Rheumatoligist . She said she shares a patient with Prof Bev Hunt who is a lot like me. I have clotted through all anticoagulation , including twice daily high intensity clexane. so far so we are running INR very high.

I’m currently on Rituximab infusions- highest intensity.

Same with this other lady, but she’s worse than me- she’s very sadly had two full strokes.

Bev Hunt switched her to fondaparinux. She’s had very good luck so far. With treatment resistant APS , fondaparinux has been shown promising in APS according to Bev Hunt. Apparently they don’t sting!

She’s suggesting I speak to my Texas hematologist about this possibility. ( my INR is labile also. ) .

Take care,

Kelly

[WendyWoo50 in reply to KellyInTexas]

Thanks Kelly. Worth asking about. Hope it works for you. Let me know xxx

[MaryF Administrator in reply to WendyWoo50]

Are things settling down a little? MaryF

[WendyWoo50 in reply to MaryF]

Pounding headache which usually means it’s low. How r u Mary? X

[MaryF Administrator in reply to WendyWoo50]

I am great, thanks, had a bad patch, now on the up, thanks for asking. MaryF

[Atkins106 in reply to WendyWoo50]

That’s my issue with clexane Wendy as I get the painful swelling and bruising. I had a spontaneous internal bleed when I was on all 3 anti coagulants following an operation, thankfully I have been really well since then apart from the erratic INRs x

[tiredmum]

I have a very erratic INR , I have Lupus as well as APS and I feel best when my INR is about 4. It varies weekly even though I eat 3 portions of green veg, don’t drink and eat healthily. It can vary by 2 in a week. I suffer from pins and needles in my face and lips and shooting head pains and dizziness if my inr gets below 3.5. I take Enoxaparin if it drops below 3. Thankfully I self test so can change my medication to counteract quickly.

[Lure2 in reply to tiredmum]

I read on your reply a couple of years ago and you did say you could not tolerate Warfarin....!?

I wonder how often you selftest and if you are Lupus Anticoagulant positive? Also if you take a veintest and a fingerpricktest within a couple of hours do the differ much? When I had CoaguChek XS my fingerprickvalue was always around 0,6 higher in INR.

I guess you know that the greens will lower your INR. You do not have to eat so much of the greens (but the SAME quantity every day) if you also lower your dose just a little bit.

[Lure2 in reply to Lure2]

your dose of Warfarin (important to say!)

[tiredmum in reply to Lure2]

I have a coaguchek Xs and test every Thursday. If it’s below 2 or above 4 I have a venous sample taken normally within 2 hours. A 0.6 difference is huge, I would get your machine calibrated. Mine is normally 0.1 or 0.2 out.

I am LA positive. I always eat the same amount of green veg every week as I am aware it lowers your inr.

I still take phenindione which I tolerate very well. Warfarin gave me sickness and diarrhoea.

[Lure2 in reply to tiredmum]

I live in Stockholm and my hospital has changed to another machine after CoaguChek XS which is much better (only 0,1-0,3 INR difference now).

Once every week is not often if you have got erratic INR, should be every second or third day.

I have never heard of Phenindione! Is that the same as Warfarin as you test your INR?

With the CoaguChek XS the difference was higher if I had a high INR over 4.0 one day. It could be over 1.2 in difference.

Do you monitor your dose yourself? I do it myself as I know my body and my Specialist knows me.

I am primary APS and triple-positive with high titres.

[Deedee2014 in reply to Lure2]

Happy New Year Can you please let me know what the new machine is that replaced CoaguChek XS? I'm looking at replacing mine. Thanks

[Lure2 in reply to Deedee2014]

Ok. Micro INR, iLine microsystems.

[Atkins106 in reply to tiredmum]

I have been doing slimming world for 3 years and lost7 stone, my diet contains a lot of fruit and veg, but I keep it consistent. It’s a relief to know that erratic inr seems a theme with APS as my partner who’s a paramedic struggles to get his head round it as all he sees is my symptoms change along with my inr.....I guess so much about APS is still not understood yet xx

[Lure2 in reply to Atkins106]

Mostly it is the K-vit min rich vegetables that will change your INR.

We have too thick blood and need Anticoagulation. Different values for different sorts of APS and different symtoms. Are you positive to Lupus Anticoagulant?

Did not understand ......."missed injections by the skin of my teeth". Are you selftesting and how often? Any difference between vein- and fingerprick-values?

[Atkins106 in reply to tiredmum]

I have weekly coagucheck tests at the hospital so am luck as I get seen and dosed in the clinic weekly or more frequently if needed x

[Lure2 in reply to Atkins106]

I now see you are selftesting every week which is not very often if your blood is very erratic. As you do it in the hospital I guess you have no CoaguChek XS of your own and I hope you sometimes also are allowed to do a parallelltesting in the vein when you are at a hospital-lab.

[Atkins106 in reply to Lure2]

It’s quite difficult. They check with the finger prick and only send you for a venous test if it’s over 5.8. Although I may ask for a venous test next time it’s very high I guess...I have to go on injunctions when inr is under 2.5 Thankyou for your help. It’s been reassuring that erratic inrs are not something to panic about (my partner might disagree lol) xx

[Lure2 in reply to Atkins106]

You should not have erratic INRs. That is not good.

You should ask to be allowed to selftest more often and also parallelltest your vein blood several times even when it is low. They should in fact, especially with your erratic INRs, only do vein bloodtests on you as you are at a lab at a hospital. The vein-value of your blood is the correct one and the only reliable. Fingertests should be done at home and for us with APS more often than every week. I do it every third day at home and when it is very erratic even more often. I monitor and decide about my coagulation and I am in close contact with my hospital and coagulation-nurse who knows me, and I give her my homeresults very often. I wish others were lucky as I am.

Important is that you know if there is any difference between vein- and finger-tests and if the difference (if any) is about the same very time.

[Atkins106 in reply to Lure2]

Thanks Kirsten I think I will ask to be referred back to the lupus unit at St Thomas . Hope you are well xx

[Lure2 in reply to Atkins106]

I feel fine! I am so happy for you if you can get a Specialist there and succeed in be referred. It is a fight we must win for ourself!