Sticky Blood-Hughes Syndrome Support
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Wafrin crashed

Last week self tested my self as normal on Tuesday inr was 2.6 !

My target is 4 and when inr falls below 3 take fragmine injections of 5.000 units

Struggled all week to get my inr up and was taking 11mg daily instead of

My normal 9 mg . Got it up to 3.6 I think on Monday and test yesterday morning was 3.4 then in evening as didn't feel well test my self again was 2.8 ! Took in lectionaries and called emergency register at the hospital as it was the evening 8 pm .he wasn't very helpful and told me I was tested to much and should of took injection said to follow new dose of wafrin from Anticoagulation clinic . The last register I spoke to last week twice was very nice concerned and very helpful.he made me feel I was just wasting his time . I'm going to self test twice a week now not just on Tuesday what days do you think I should do ?

Was going to do Tuesday and Friday

As I do drink wine 🍷 sometimes on a Friday and Saturday night 😊One to help me relax and two to make me sleep 😴 because my pain with lupus and insomnia

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Hi Tim,

I drink only one glass of wine for dinner EVERY day. Alkohol makes the INR unsteady.

Try to talk to your Specialist on May 5 (was it right date?) and have something else every day instead of Wine. That is not so good and it will become a habit but i understand you so well. I like my glass of wine for dinner!

Kerstin

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Tim

We are not medically trained professionals on here, so we cannot advise you when to test.

As I'm sure that you know it is consistency in what you eat and drink that is important when taking Warfarin. I used to try to eat a similar amount of leafy green vegetables, every day, to keep Vitamin K intake similar and I also tried to drink a similar amount of alcohol each day too.

I hope that this helps.

Good luck.

Dave

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Sorry you're having inr issues- I am to! Mine is down to 2.6 and I'm injecting every day. Not sure what happening with me! Seeing my GP on Friday to come up with a plan. Hope you're sorted soon x

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What's your target inr ?

What dose of fragmine injections do you take

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My target is 4 (3.5-4.5) and I inject 15,000 units daily

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I believe the dose of fragmin goes on weight (I'm 69kg in hospital with shoes and coat in haha) no idea what that is in stones and I'm not looking - I'm tall lol

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I'm only on 5,000 unit dose of fragmine on call register last Tuesday said that might not be strong enough for me 😐

What has happened to you in the past have you had a stroke ?

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I've had a spinal stroke, two TIAs and ongoing issues with tongue numbness and tingling lips! As well as the worst obstetric history you can imagine.

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What is a spinal stroke ?

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I had a blood clot in the end of my spinal cord which caused permanent damage. I have ongoing pain issues due to spinal cord injury. It's been tough as it took a long time to diagnose as it's so rare.

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Good luck hope you make a speedy recovery 👍

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Thank you x

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