INR Probs

[GirlfromTennessee]

Hope everyone enjoyed New Years!!!

My Blood has stayed pretty stable for the last 4 Years ... Thursday it was showing 5.0 INR. The thing is I felt WONDERFUL had a Clear Mind & just felt full of energy! My Dr has me to skip my Thursday does & cut me back on my Warfarin. I was taking 5mg because Cold weather seems my Blood Thickens. My normal does is 4mg. Would 1mg cause your Blood to thin this much??? And why do I feel so much better with it thin??? My Dr likes for my INR to stay at 2.5, I have told over & over that I do better when it’s thinner!

[KellyInTexas Administrator]

You are having an an , “ a ha!” Experience with your INR!

Now you truly understand.

~3.0 is standard starting INR. ( if only venous clot involved. If more than one a little higher.)

I’ll send you 2019 EULAR recommendations. The same standard used here as well- it’s international.

rheumnow.com/content/2019-e...

[Lure2]

Hi,

5.0 in INR was that taken in the vein or in the finger?

What is your therapeutic level set by your Specialist/Hematologist?

[Eriewa1 in reply to Lure2]

I only get tested by veins

[Lure2 in reply to Eriewa1]

This was a question to Girls from Tennessee!

[GirlfromTennessee in reply to Lure2]

Finger Stick

[Lure2 in reply to GirlfromTennessee]

Then it can be lower. I hope you also parallelltest in the vein so you know any differences between the two. Only the vein-test in a lab is reliable as to INR.

When the blood is thin we feel less symptoms if any. We are all individuals with different sorts of APS. When it is correctly thinned we do not get clots easily.

Important to know the differences for you. I understand you feel good with a fingerstick of an INR of 5.0. Most of us would.

If you took a test in the vein when having an INR of 5.0 in the finger you would probably have perhaps 4.5 in the vein. This is just a guess as I (when using the CoaguChek XS) would have been at an INR around that INR or even lower. (I am triple-positive with positive Lupus Anticoagulant). When we have a high INR the difference between vein and finger is bigger!

You should probably not go higher than 4.0 in the vein. Doctors who are not knowledable of APS are very afraid to let us stay at a rather high INR as they are so afraid of bleeding. Are you triple-positive with Lupus Anticoagulant? I have forgotten if you have already told us that .

I can tell you that I selftest and monitor my own blood. I take 5 mg daily and do not change my dose much (only 1/4 or 1/2 of a tablet weekly perhaps) 1 mg is about half a tablet and that can lower your dose quite a bit within 2-3 days. My tablets are 2.5 mg.

If you take more greens (take it easy!) that will lower your INR within 12-15 hours depending on your type of person of course, as we are individuals. Careful with change of tablets at the same time as that can make it quite too much.

[Lure2]

I just now read that your Dr (Specialist ? - I doubt) panic when you get under an INR of 3.0!!

You also say you never do any vein-draws - then the fingerpick test could be much lower than the real vein-value, especially if you are positive also to Lupus Anticoagulant.

Try to get a Specialist of APS who understand that we do not bleed but clot from this sticky-blood-syndrome. The problem for us is to get up to an INR where we do not risque to clot and where we also feel good.

Probably you had an INR of 4.2 - 4.5 when you had 5.0 in the finger. I feel very good when on an INR of 4.2.

In fact my Specialists tell me to keep an INR of 4.0. I selftest like you every 3rd day at home.

[Lure2 in reply to Lure2]

I should say the fingerprick-test usually is higher (not lower) than the vein-value with a CoaguChek XS.

[Eriewa1]

Hey, happy new year's. My doctor had me skip every other day on warfarin because my INR went to 4 I told him I felt GREAT please I haven't felt that good in years. But he said NO and told me every other day. He doesn't know much about APS. So, now I'm waiting till the end of the month to go to Pittsburgh. I cant wait my last INR was 2.4 he was happy I sure wasn't. I felt like crap hurt brain wasn't working depressed like crazy really off balance and speech. I just couldn't find it to get off my sofa. So now he has on 4mg warfarin every other day. That's what he says. Me I say 4mg ok fine but when I feel my self going down I will go up to 8mg warfarin for a few days. He was happy with my low INR and dont want me tested for 3 weeks. He is just really dont know anything. Well I know I feel! I know I shouldn't play my dose but I know me. Good luck!!! Stay strong. (I'm not telling you to play with your dose that's forsure. I also have MS and my MS doctor has me doing tysabri )

[KellyInTexas Administrator in reply to Eriewa1]

APS ( almost always) will drop their inr’s more drastically than non aps patients when withholding a dose of warfarin.

A hematologist who has not dealt with a APS patients may not pick up on this trend.

As a rule, if you are only a little high, it is advised by APS specialty hematologists to adjust the dose down for a day, not withhold. Also, increase green veggies which are high in K immediately ( spinach) simultaneously.

Then VP ( vein) test daily / every other day until hemostasis is achieved.

[MaryF Administrator in reply to KellyInTexas]

Great advice as usual! Not having ever used Warfarin myself I find any discussion about it on here really useful, from expert patients such as yourself. MaryF

[GinaD]

nearly all doctors in med school are taught to fear warfarin and the serious brain bleeds it can cause. But in all my years – how long has it been? – that I have been on this site, I never remember reading anything about someone with APS having a serious bleed. Find a doctor experienced in treating APS! even if such a doctor is a bit of a drive, you can have blood drawn locally and the doctor can guide your INR by phone. For the first several years after my diagnosis, I was treated by a doctor in Cincinnati which is a 4 1/2 hour drive from my house. I saw him once or twice a year and was very happy with his treatment recommendations.

[terrim]

Hi 2.5 is the standardINR for people on warfarin for heart / thrombosis but APS sufferers tend to need a higher level. My doctor likes me to be at a range of between 2-3 but I feel best when I’m at the upper end of the scale. Here in England i get tested every 10 weeks as my levels are pretty stable but I am pretty careful with what I eat. Keeping my fit K intake in hand. Definitely get a doctor who understands APS.

[GirlfromTennessee]

Thanks Everyone, I found out that I overdosed myself!!! 🤦‍♀️