I’m on warfarin, not for AF. But through thrombosis.

[Kitty76]

Not sure why I have been directed to this particular forum? Can anyone help in how I change the topic forum to make it more personal to myself and learn more about my own condition. To help others. I was diagnosed with possible thrombosis 5 years ago, there is a familial predisposition as My Nan, my mum and my mums sister also developed blood clotting issues either around pre or post menopausal. The heamatolgist said it’s too risky to not be on warfarin life long. Now I’ve had 3 PE’s When presented to A AND E, with a possible pulled muscles pain in my middle upper back!!

[BobD Volunteer]

There may actually be a thrombosis healthunlocked but we are a friendly bunch if you want to ask any questions about anticoagulation. I have been on warfarin for 16 years nearly with zero problems due to having AF which makes us five times more at risk of stroke. There is a Thromosis UK charity as well and I do some proof reading for them so know they have lots fact sheets and useful information your could read.

[Heart1234Wisconsin]

Warfarin has been determined thru some studies to be less effective than some of the newer anticoagulants in stroke reduction. That could be why you have been directed here.

[Kitty76 in reply to Heart1234Wisconsin]

Thank you for that. Although the newer anticoagulants don’t seem agree with my mums blood ( the blood shows signs of thickening and in my mum it doesn’t stop blood from clotting at all she had two more life threatening clots when came off warfarin so had to go back onto it too) plus it’s also a drug that if I was to injure my self would cause me more risk as the drug has no coagulating remedy unlike warfarin which has vitamin K as an antidote to reverse the effects until my inr becomes stable once more. So they said the risk was also too high to try me on new drugs.

[Kitty76]

I don’t have an official diagnosis, but the blood clotting seems to be familial as it seems to affect most of the immediate females on my mums side. Such as my mum, her sisters, my Nan and now me around pre menopause or just after the menopause. Been tested for many common blood clotting problems, genetic and otherwise, but nothing has been conclusive. So still under investigation 5 years on. Cause ??? Although they said, (the haematologist) there are more rarer proteins and genetics that they don’t fully understand as of yet, but we also have RA and lupus which my mum and one of her sisters has. Which also makes blood clotting/sticky blood more likely. So far I’ve been tested for both too with no positive result, although I’m showing symptoms of lupus again not enough antibodies to create a positive diagnosis as it came back borderline.

[Mira265]

At the beginning things do seem puzzling. However in a number of years I have not had any problems and I go to my anti coagulant clinic every 10 weeks. My appointment is 9 o’clock and I am usually home by 9.10 . I feel good at being monitored. With the new drugs you only get checked every year. My clinic lady always answers any questions with a smile.

The Heart Foundation forum may give you more information and they have leaflets and other information.

[sam1zoe]

Hi Kitty I have been on warfarin for 4 years due to a PE and a mesenteric Venus thrombus.

Have no problems although my INR is a bit erratic at the moment probably due to personal circumstances.I like having my INR checked, it makes me feel safer

[Kitty76 in reply to sam1zoe]

Hi sam1zoe, yes me too. My INR has been the same. Supposed to be round 2.5 to the max of 3.5. It’s been over 4.0 on some days it has been checked. I go every 5-7 days at the moment but she won’t allow me more than 2 weeks anyhow as my INR has always been unstable when it goes below 2, I have to have those dreaded injections until my INR goes to 2.5 or more x2 and if not after 2 weeks of them, I’m admitted for a heparin drip until it has.

My nurse said it sudden life style changes and obviously with what is going on, our bodies are out of sync hence the coagulation effects will also be. It should settle down over a few weeks if not I’ll be in hospital again as precaution.

[sam1zoe]

Good luck to you Kitty

[Kitty76 in reply to sam1zoe]

Thanks you too. Happy keep in touch on here.