INR: Had my INR done today. Was 5.... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Had my INR done today. Was 5.9 even my INR nurse reckons something is wrong. Still feeling rubbish but she's managed to get me an appointment to see my family doctor next Tuesday morning so hopefully he will be able to help me. If all else fails I have an appointment to see a rhematologist on the 25th may

10 Replies

Hope they adjusted your dose mine has been 7.5 before not nice had to miss a day

Hope you get it sorted out soon

I've had to miss a dose tonight then test again Friday.

In the past year my INR has exceeded 9.3. Twice I was given a shot of vit K. What I don't unmderstand is that my doctor seemed relatively unconcerned even though each time my arms or hands had turned black, I was in pain, severe vertigo for hours, and vomiting. Is it just that doctors in the US are simply lacking in the care or knowledge of APS compared to the doctors in Europe? Can anyone please recommend on the east coast in the US who is more informed than the doctors I've been seeing? I'm really concerned about the care I've been receiving. Thanks very much.

Glenn in reply to fchristal

Not enough doctors know or I feel care about APS, and it sucks, I have a doctor In Alaska that is good, and I had a good in VA, so I have been so lucky, but, we need more. I have actually had to teach doctors about my APS, and that so blows... You know

I have had an INR over 10 a couple of times, almost dyed those times, luckily I knew and went to the ER , bled through every place on my body, was so scary, I even got a blood transfusion cause it was that high. We need to make sure we regulate it , cause it sucks when you have go through that...

Thanks very much, Glenn. I wish I could get to Alaska. You would think that in the NYC area where I live would have more informed doctors. I keep a very consistant diet and really end up studying on line. I even had to get my own PT INR testing machine because the doctors couldn't get blood from my veins after they were wrecked after weeks on IV Vancomin after a secondary hospital infection after surgery for a clot that caused my small intestine to become gangrenous. I guess I'm just frustrated and appreciate your concise summary that APS just "sucks". I wish you better health ahead. Thank you, Florence

Glenn in reply to fchristal

Wish you better times too Florence, I hate it and frustrated too. nYC you would think, but looking the inopertune places that's where it ussauly the best, I found

Many years before my diagnosis I collapsed outside my then doctors,and was paralysed with facial droop on the left side. Couldn't speak, having trouble breathing, and a whopping headache, was half carried/dragged inside by a friend, INR was found to be 11.9. I could hardly walk, and my then doctor gave me a prescription for antibiotics. Was left to drive myself home too. Couldn't quite work out what I was taking or why as I was confused. My husband after three days complained to our then doctor, and I was rushed into hospital. No scan given or vitamin k either. Just starved of warfarin, told I had migraine. I have since found out he diagnosed laryngitis, as I couldn't speak!!!!!!!! Needless to say we have another doctor now, who is brilliant, and very understanding of the symptoms I have to face on a daily basis, and does everything he can to make my life easier to live with. Sorry to moan, and do understand what you're going through, just feeling low at the moment, and let you know that you're not on your own Charlie. Take care x

You can moan if you want to I feel that's all I'm doing lately I feel like I'm getting worse and all I want to do is sleep. They keep saying I have labrynthitis (whatever that is) but I know my body and I know it's not that. Having this same problem for months now I would of thought that it would of cleared up by now. It's horrible not being able to function properly. I'm scared I'm never going to feel normal again :(

Hi my INR has been low for the past for weeks all I want to do s sleep. Doctor is sending me to a sleep clinic. Take care x

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