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Sticky Blood-Hughes Syndrome Support
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How long did it take you to reach a stable INR?

I am only a week diagnosed so early days. My warfarin dose has been changed 4 times already - I have taken between 3mg and 10 mg. INR remains at 1.2

Feel a bit overwhelmed but as I say early days.

Lynn

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Sounds maybe normal. I'm still new at the game. Maybe 5-6 weeks.

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I was taking warfarin for 13 years and never stabilised. I am now on sinthrome, but not in range 3.0-4.0. My inr is 1.3 at the moment and taking 6mg daily, hoping it gets there soon.

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Unfortunately, some Hughes syndrome patients really struggle to maintain their target INR and it can be a real challenge. Often it's much more difficult to increase the range than bring it down but, once you get there, it's much easier to bring it down, say, by eating a plateful of spinach.

I'm sure there are lots of people on here who will have been through the same thing. Hope you get within range soon :)

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Are you on Clexane as well until your blood gets nearer target

I eat the same amount of vegetables or try to each day I treat them as medication, if I have a meal without veg for a couple of days. I make sure I eat something extra such as kiwi fruit or pickled Gurkin

If its too low glass of red wine is nice,

they will get it sorted out for you soon.

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Thank you for your replies everyone - I am learning loads each day on this site :)

Daisy - I am not on clexane - will look into this :)

Each time I post I feel more hopeful.

You know, I kinda knew I had this way before diagnosis as stuff just fitted. and I have had it but undiagnosed for 20 years according to my consultant. But I am amazed by how overwhelmed I feel, now diagnosed - there seems to be so much to learn when you start Warfarin :)

Lynn.x.

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It can feel overwhelming at first, but after a while, it became a normal part of my life. I take a multi-vitamin in the morning and I take my Warfarin tablets at night. I eat a healthy, consistent diet, and do my best to keep my INR in a theraputic range. However, it did take several weeks for my INR to get to where it needed to be, and it does still fluctuate depending on my level of stress and what I ingest. I've been taking Warfarin for about fifteen years now and I live a "normal" and healthy lifestyle. :)

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After my DVT I was placed on Warfarin and for six months it was a real battle to get a stable INR. My dose changed almost weekly and I was taking ever increasing amounts.

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It took 12 months for mine to be reasonably stable but it has taken off again. So many things interact with it. .... medications, food, illness, stress, exercise ...basically anything and everything

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Been on it almost 13yrs, after a stroke range 3-4... (I have lupus) its always up & down. It drives me nuts! Medication affects it, my monthly cycle affect it, foods affect it...

I often wonder why I bother, feel like I dont live, merely exist!!

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I am new to the blog and find it so encouraging to hear that everyone has had various challenges. It can be very lonely as few people understand the condition. I have moved from the UK to South Africa, and interestingly enough the warm weather has played a big part in keeping my INR stable. Now that winter is on it's way I have found I have had to up my Warfarin dose to maintain my INR between my target range of 3.7 - 4.3. I am also very sensitive to food. Certain food types drop my INR levels immediately. As soon as I go below 3.7 I develop clots. A big no, no for me is ice cream, more than half a glass of red wine( can only have once a week), mature cheese, green vegetables and lettuce. I have found out by trial and error. It has taken me 12 months to stabilise. The warfarin pharmaceutical brand also maded a difference. Once stabilised on one brand and changing to another, does upset my INR levels. We are all such individuals and our bodies respond so differently.

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I have been on warfarin for about 30 months and it has never been particularly stable

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I have ( so far) had pretty good luck with warfarin. I hit a stable level within a few weeks, though miner adjustments were added here and there. I did find, early in my disease, that I ad TI

O take name brand, Coumadin. After about 10 years, under monetary pressure from our insurance company, I switched successfully to the generic warfarin. But for those first few years I had to take the brand.

Either the generic formulation is more consistent now,( in the US the FDA gives generics a huge plus and minus actual active ingredient window.) or my body has some homeostasis mechanism which has now embraced and works to maintain my new INR.

Be persistent. It will sort out.

Gina

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