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Wolf dog  Danielle Henry wrote 2 months ago

Hello All,

Firstly, I am extremely grateful to discover this website because this is all new to me and I was extremely anxious.

Anyways, I'm 36 years old living in London and in December of 2017 I had a really bad stomach ache (worse than labour contractions) and was unable to pass gas, belch or stool. I visited the doctor 3 times and called advice lines on several occasions over the space of one week and was continuously told that I had really back trapped gas which would eventually expel itself. This did not happen. The pain got worse, I was unable to even hold water down and I lost weight rapidly.

I decided enough was enough and packed my bag overnight bag and went to the emergency room. They carried out some blood work and said there were some abnormalities in my blood and immediately sent me for a CT scan.

The results showed that I had multiple blood clots in my portal vein blocking the blood supply to my liver and bowel. I was close to bowel ischemia and severe liver damage and stayed in hospital for 2 weeks.

By God's grace, I made an rapid recovery and I'm now on Warfarin for life. So far I haven't really had any physical issues with the Warfarin but I am on a very high dosage of 14mg per day which is extremely worrying. I also have not been told what caused this, Lupas had been mentioned and and APS but nothing has been confirmed.

I am currently seeing a blood specialists so I hope the reason my my blood abnormality will be discovered.

That was my background of how I got here but my main reason for writing this is to ask if anyone is on a high dosage of Warfarin also because this worries me. I understand this medication is keeping me alive but i'm worried about the effects later down the line.

My INR is currently 2.7.

Category: Blood Clots

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Total Comments: 5

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Fantasy avatar 3  APSpositive - (32) - posted 2 months ago

Hi
Sorry you have been so unwell. Being on warfarin is really new to me too. It definitely sounds to me like you have APS ( otherwise known as Hughes Syndrome or Antiphospholipid Syndrome). I too have had numerous clots out of the blue including one in my liver. I am 41 and have been on Warfarin since the start of Feb.

I have done lots of reading and have a great team of doctors and nurses taking care of me. The key thing they have taught me is the dose of warfarin is irrelevant. It is all about getting the right INR for your condition. Most people who take Warfarin have a target INR of 2-3. People with APS usually need an INR of 3-4 to stay symptom free.

Therefore the important thing is lots of blood tests to monitor INR and constantly altering dose of Warfarin to make sure that you are within target.
Warfarin will enable you to live and it’s side effects are negligible compared to what could happen to you if you don’t take it.
My dose varies daily from 3-10mg.
Good luck

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Brachiosaurus  warrick - (1) - posted 2 months ago

Sorry if you read my first comment which has ended up last as I'm limited to 3000 words then go up, its put them out of order :-)

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Brachiosaurus  warrick - (1) - posted 2 months ago

"Because the liver as an organ does many other functions in your body many things can affect how much warfarin it takes to block the clotting effect to increase the amount of time it takes to form a clot. Your height , weight, age, gender, metabolism, activness, genetics are all physical factors that determine this. External factors that determine dose and cause the INR to go up or down (and hence the dose needs to be adjusted to keep the INR in range) are diet, alcohol intake, smoking, grapefruit and cranberry juice, over the counter medicines and herball supplements, antibiotics and many other medicines can interact. Also the flu, colds, diarrhea, and other infections can affect it as the liver works in your body to fight these. So as I said INR is clotting time put into a ratio, so 1.0 is considered a time of 10 seconds (normal hence normalised), a range of INR 2.0-3.0 which is the most common, is an increased clotting time of 20-30 seconds, your blood still clots but it just takes longer. So the amount you need is the amount you need to be "in range". As an example I take 9mg daily (this can vary 0.5 mg daily up or down from week to week depending on an INR test), my father takes 3 mg daily, his cousin use to take 11 mg daily, my friends step mother takes 4 mg daily, another friend of mine takes around 7.5 mg daily. I've read of people needing up to 15 mg and higher daily to be in their range. So tell her not to worry, that its perfectly normal for people to be on different amounts and that the main thing is that she is in her range set by her doctor :-)"

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Brachiosaurus  warrick - (1) - posted 2 months ago

" I have been on it since 2015 due to a valve replacement for a birth defect, I am 41 years old. My father has been on it for 34 years for a valve replacement with no ill effects at all. The current longest surviving single operation valve replacement had his surgery in 1967 and has been on warfarin ever since with no ill effects whatsoever. His Calcium Value is 9.9.....inside the normal range of 8.4-10.2 mg/dL. For the record thats over 50 YEARS ON WARFARIN. I know if you research the effects of warfarin you can find on many fluff sites stuff like your hair falls out, and it makes you feel colder etc. There is little in the way of properly conducted peer reviewed studies to confirm this. There are some studies that it affects bone density and there is a truckload on it on the net and most of it is unsubstantiated stuff which takes the ball from a single study and runs the extrapolation mile with it. Early studies suggested a correlation between warfarin use for decades and osteoporosis in elderly patients who were sedentary. When it was observed that elderly sedentary get osteoporosis anyway subsequent studies cropped up to find no significant correlation with warfarin. so being a vegetative elderly will bring you equal likely hood of osteoporosis, something now being addressed in nursing homes. For instance studies in rats where the rats were given well past lethal doses of warfarin combined with huge injections of vitamin K have shown some signs of calcium issues but not in bones http://www.ncbi.nlm.nih.gov/pubmed/21298649 If you read the details of the article you will see they gave the rats a massive amount compared to the very small dose used in humans. For a 70Kg body weight that's dose of 1g of warfarin. (or 1,050mg - one thousand and fifty mg) twice a day right.... hand's up here who takes that amount? my take out is that if you want to setup an experiment to show a result in the abstract (all that is often read) then you can fool most of the people most of the time. "

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Brachiosaurus  warrick - (1) - posted 2 months ago

Hi below are a few excerpts from comments I have made here, sorry to hear you have had a rough time with things, I hope you can find something below useful, I'm a warfarin lifer also so welcome to the club :-) From what I've learnt from both interacting with others permanently on warfarin around the world and my own experience is that it's not a biggie, clearly the biggest worry is a stroke or a major bleed however this is mitigated by good INR management and being in your range as much as possible, that's where I believe weekly testing is the gold standard, and being young and having a pretty high stake in having things right I self test weekly and self manage my dose, both are surprisingly easy to get a handle on with a bit of help. Unfortunately if you do have APS then self testing point of care machines that only need a drop of blood from a finger stick (such as the Coaguchek XS home meter) can't be used for testing, so it's a blood draw :-(
14mg sounds high but it's no different to me being on 9mg or someone being on 5mg, the important thing is your INR is in range regardless the dose size, it's like you wear size 14 shoes and I wear size 9 :-). I have read a bit about people being considered warfarin resistant at 15mg but this is nothing more than your genetic makeup and is neither here nor there, no biggie !!

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