extremely high inrs for aps

[shinyeyes]

I've had my inr past 10.8 and had to receive plasma 2 days ago it was 9.9 they did not make me go in I get really lethargic and just want to sleep and I also have bad stomach aches. no Drs can figure out my dosages right and they're no longer comfortable managing it. I HATE this disorder

[Greenmil3]

that sucks mine varies enormously and I have to have Venus checks every two weeks but still like you ended up in high nines and casualty department for a long wait whilst they got the plasma sorted. Nobody manages mine I have self managed for years but still surprised me when it turned out to be my obsession with ginger nuts doing it! You are not alone at all this disease is horrific I’m currently sleeping close on 18hrs or more a day just can’t stay awake. Stay strong you will adapt and overcome this disease.

[shinyeyes in reply to Greenmil3]

I've been thinking of managing it myself

[nossib in reply to Greenmil3]

My INR has gone really high following surgery & sepsis so I have been taken off my warfarin. the strong medication I'm on for the sepsis is what made it soar so high.

I'm interested that you are sleeping a lot for I'm falling asleep all the time....is there a connection.

I haven't had plasma mentioned to me. What does this do?

[shinyeyes in reply to nossib]

the plasma quickly reverses the thinning effect and will thicken your blood back up I've heard that people with aps just have more symptoms than others and one of them is fatigue and mine also happens to be severe. another symptom is gi issues which I also have really bad issues with. I may have some really bad gastric issues going on which is what's causing my warfarin issues but can't get in with gastro until aug1 and I'm losing 1 lb a day about. taking me off warfarin isn't a good idea since I've already had 2 dvts and my igg and another one of my levels remain high showing my platelets are still super sticky meaning I'm probably just gonna re clot. I'm not very lucky and I want a new body.

[MaryF Administrator]

I really hope it settles down quickly for you, and you are given some helpful advice, I am not on Warfarin, but I do know that many have a problem, and sometimes it is a vaccination, or a virus, or something in the diet, or alcohol or sometimes a reason can't be found and it stays mysterious. Medications and even vitamins can also cause this. I hope you get to the bottom of it and get better soon. MaryF

[Pooky7]

hi, yes, it can be a pain. I read a lot about what foods, herbs, teas, supplements or whatever I ingest or even sometimes put on my skin affects the use of warfarin. I eat a clean organic diet. This has helped my energy level. I also started taking a tablespoon of high quality olive oil that I order special. My muscle pain level has gone down 75% in a month and fatigue too. I have limb girdle muscular dystrophy too—but walk 3-4 miles a day. I had to nap in the afternoons as the fatigue and pain was overwhelming. Now, it’s amazing how different I feel. No naps! This has only been the past few weeks, so we shall see. Olive oil contains vitamin K. I eat many food with vitamin K, I just adjust my warfarin if I overdo:). I eat other things that increase my inr. So it balances out—-usually. I feel like a mad scientist some days! Hang in there, you will find what works for you

[nossib]

My INR has gone really high following surgery & sepsis so I have been taken off my warfarin. the strong medication I'm on for the sepsis is what made it soar so high.

I'm interested that you are sleeping a lot for I'm falling asleep all the time....is there a connection.

I haven't had plasma mentioned to me. What does this do?

[nossib]

They've assured me that with my INR high I won't be at risk of getting a clot, more likely at risk of a bleed. I have had a pulmonary embolism, so was concerned coming off warfarin but once I can stop this medication and my INR reaches at least 2 , I can recommence the warfarin.