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Bugatti silver black  Lulubelle wrote 4 months ago

Hi my name is Lulama Ngobeza I have been on warfarin since August 2016. When I was admitted it was because of the Pulmonary Embolism and also discovered that I have anti phospholipid syndrome and was diagnosed with Lupus. My target is 2-3 but I am struggling to get there. Sometimes the blood is too thin and sometimes too thick. When I asked the doctor how long will I be on warfarin she said for life. I am not sure what to eat anymore because my blood keeps on getting thicker but have stayed away from the greens the whole of last week.
The other problem I have is the neck and hip pain as well it comes and goes and if I excercise at least the pain is not so much. I am also on other meds like plasmoquine, calciferol and Azathioprine (Imuran) and I drink them in the morning after breakfast so that they dont interfere with the warfarin. Thank you for this platform we'll really appreciate your advise and suggestions.

Category: Blood Clots

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Polar bear family 2  ButterflyK8 - - posted 3 months ago

Hi Lulubelle,

I too have Systemic/Discoid Lupus and am on lifetime Warfarin after having 3 DVTs with antiphospholipid syndrome/lupus anticoagulant in my blood. These autoimmune diseases all seem to tie in together. I was diagnosed in 2005 with my first DVT and over the years the best way I was able to keep my INR stable was to eat how I normally did (healthy of course) and then let the doctors adjust the dosage to what I needed. It has worked very well and has only needed to be adjusted maybe once in the last couple of years. It was when I didn't try so hard that it stabilized.

My doctor gave me a easy cheat sheet too. I keep it on my fridge as a reminder. She drew up/down arrows but I had to use (+/-) increase/decrease keys on the keyboard instead.

+ greens = - INR
+ alcohol = + INR
- appetite = + INR

Hope this may help you. Get your rest and take gentle care of yourself.
Blessings to you, Kathleen

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Bugatti silver black  Lulubelle - (46) - posted 3 months ago

Hi there, thank you so much for the information especially the cheat sheet. It makes sense now.

Take care.

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Brachiosaurus  warrick - (1) - posted 4 months ago

Hi Lulama, sorry to hear of your health issues and struggle to keep you INR stable. I am on warfarin for life also. I have not made any changes to my diet at all and I have a stable INR (most of the time :-)) so hope you can too.
Many people have found that taking a vitamin K supplement actually helps stabilise an unstable INR.
There is some good info here http://inrtracker.com/discuss/vit-k-supplementation-to-stabile-inrs
http://www.clotcare.com/vitaminkstabilizesinrs.pdf
http://www.valvereplacement.org/forums/forum/anti-coagulation/854494-my-experiences-with-vitamin-k2-and-inr http://www.valvereplacement.org/forums/forum/heart-talk/38392-vitamin-k2-and-warfarin http://www.valvereplacement.org/forums/forum/anti-coagulation/41008-great-article-on-vitamin-k-supplementation-and-anticoagulation-control
It's important that you have vit K in your diet so you need to eat your greens, its better to be consistant with your diet.
A vitamin K supplementation helps smooth out the highs and lows of vit K intake and should keep things more level.
Talk with you doctor about this, hopefully they will be knowledgable on this and help you out.
Best wishes

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Bugatti silver black  Lulubelle - (46) - posted 3 months ago

Hi there, thank you I will definitely check them out.

Warm regards

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