Want to come off warfrin

[Mom-of-3]

Hi, I've been on warfarin for over a year and a half, I had a embolism to my lung, my inr is always to high or to low, my dr will not take me off until I'm stable,I don't like a lot of the foods with vitamin k, so I see no end to this, has anybody had a similar problem

[Hidden]

Hi. I had an unprovoked multiple bilateral PE in October 2014 and took warfarin initially. I couldn't get stable on it either and was constantly having to go for INR tests. I had to come off of for tests after six months and subsequently was advised to take anticoagulants indefinitely. The haematologist advised against warfarin as it had been problematic for me and suggested I try a NOAC: Rivaroxavan. I've been on it for over a year now, not without issues initially (bleed) but now seem to be ok on it after having a coil fitted as an emergency procedure.

With NOACs the catch is that there is currently still no reversal agent (but there is one in the pipeline) so you need to weigh up your risks: are you more likely to have another PE than a potential bleed on a NOAC? Do you know what caused your PE? For me the worry and risk of another PE is much higher than a fatal bleed on Rivaroxaban so I take my medecine and find it much more convenient than warfarin. Constant hospital visits were extremely traumatic for me and also completely impractical with working and parenting. Have you discussed alternative options with a haematologist?

[kazmoonpepper]

Yes my inr hasn't been behaving for 18 years. I have a blood disorder with factor v leaden and thrombophilla so they can't stop clots so am on lifetime Warfarin. I get my blood tested every 1 or 2 weeks as is always too high or too low it drives me crazy. I wish you luck but please be aware there are some of us that our inr is never stable x

[Hidden in reply to kazmoonpepper]

Hello , 18 years that gives me hope I'm waiting for blood test results , do you mind me asking what range you are on? Sorry for hijacking post 😬 Thanks

Emma

[kazmoonpepper in reply to Hidden]

3.5-4.5 but like to keep it between 4 and 4.5 as my leg hurts less x

[relkcam]

Clearly, get used to it. As with Type 1 diabetics and other medical issues many of us have, we must learn and pay attention to how food affects our health. With warfarin, coumadin, understanding how dramatically vitamin K affects our INR and therefore the potential for another clot, when low, or having an internal bleed, when high, is critical. What I have learned from the nurses at the local hospital's coumadin clinic is that many on warfarin pay little attention to this essential relationship between K and warfarin that result in serious health issues up to and including death. Use the USDA reports for Vitamin K to assist in choosing foods you may enjoy.

ndb.nal.usda.gov/ndb/nutrie...

[IanredUK]

It doesn't matter how much vitamin k you eat. In order to get a stable INR you need to eat and consistently. If you like an alcoholic drink you should have a similar amount each day. e.g 1 glass of wine each day rather than a single bottle at the weekend. The same with green vegetables either avoid them totally or each a similar portion each day. Othery things that can cause INR to vary are certain other medicines like antibiotics ypu should check with your doctor or pharmacist.

[Lisacharman]

I have never been longer than 7 days between blood tests as I am more out of target than in but I have lots of other health issues and a suppressed immune system doesn't help my gp has spoken to me about changing anticoagulants but I have been on warfarin for 9 and half years and have my own blood testing machine at home all I can say it's not everyone is on target for a long period of time and everything we do effects warfarin so I would try not to worry and relax and enjoy your life hope this helps

[Wittycjt]

Maybe you need to switch to LMWH: fragmin, lovenox, etc?

[Kateydog]

The answer is to go onto one of the new anticoagulants. I take Rivaroxaban: one tablet a day, no constant blood tests. Much sompl;er if you can persuade your GP. (It does cost more, but my GP was willing to contact my hospital consultant and he agreed to the change in writing, so my GP felt she had authorisation which her practice could not argue with.)

Good luck!

[heatherhere]

Three years ago, after having been on warfarin for a full year because of pulmonary embolisms, I went off of warfarin. During the year on warfarin, I spent a great deal of time doing research on bloodclotting and why and how the body does what it does after surgery or an injury.

What I concluded was that blood clotting is a normal part of protecting the body from bleeding to death for a period which on average is about 3 months before it has gone back to normal. That's what the research indicated.

Warfarin, superficially, stops the body's natural processes, for obvious reasons, protecting from potentially life-threatening clots. In my opinion, this superficial interference by warfarin interferes with the body's attempts to return to normal functioning and extends the period in which the clotting mechanisms are superficially controlled. I concluded, and I don't push these onto anyone but am simply sharing this, is that the longer that the body relies on superficial means to control the body's normal mechanisms, the more dependent the body becomes on them.

When it was time for me to go off of warfarin, which I was told to do "cold turkey" after the one year recommended period, I was a bit concerned that once the drug was yanked suddenly that there might be a reoccurance of a clot, and indeed I began to feel pains in my calves and around my collarbone, both of which were early indicators of clot formation, at least in my experience.

Before I had gone off of warfarin, Ihad researched natural anti-clotting elements which are basically the kinds of this patients are told to stay away from when on warfarin because of how they interfere with warfarin. Some of these included things like vitamin E, ginger, fish oil, aspirin, and very importantly an enzyme supplement, especially one containging Nattokinase and Serrapeptase which help to break down fibrine (as in fibrine in clots). For anyone intereted in understanding how these things affect blood clots and blood clotting, I recommend you do the research yourself.

My experience with these things when I was transitioning off of warfarin and for some time thereafter whenever I'd feel what I felt might be a blood clot forming, was that within 20 minutes within taking all of these together, the pain was gone and I felt back to normal again. During that first year of my body readjusting to life without warfarin, I had frequent attacks of pain. As time when on, the "attacks" became less frequent and now four years later I hardly ever have any symptoms though I still always make sure to have these things on hand.

I've always believed in working with my body and giving my body the components to help it heal and in keeping drug use at a minimum. I don't advise anyone to do what I do and have done. I know what has worked for me and I can share that, but I cannot give advice to anyone. I think that whenever we share our insights, it can help someone in some way, and that's all I am trying to do.

I'm glad the drugs were there to help me at the time I needed them. Warfarin helped to protect me at a time when I knew nothing about how blod clots formed and were prevented. Like anyone who goes through the experience of having a blood clot lodge in a lung or another part of the body knows, it's a scary experience. Had it not been for the experience, I would not have been motivated to learn what I learned. What I learned helped me to better understand how the body works and I learned some valuable lessons and gained valuable insights. I wish you all wellness and better health.

[Amber79 in reply to heatherhere]

I am 37. I had a simple outpatient procedure due to a miscarriage and developed a small pulmonary embolism in my right lung. I now wonder if I had already had it due to the high amounts of birth control used for long periods of time before the pregnancy. I was diagnosed with the PE one month ago. I was admitted and put on heparin injections and sent home on xarelto. I developed extreme blurry vision and was told at ER that it must be coincidental my eyesight was getting bad and it had nothing to do with the xarelto. I chose to not take 2 doses and the blurry vision stopped. I demanded to be switched to warfarin after researching how long it has been around and that it is closely monitored and has an antidote if you develop an internal bleed. I thought I was doing great. I developed extreme sharp chest pain and they did a CT scan and the blood clot was gone. Perfectly normal CT scan. I had blurry vision returning and it so happened at the visit for the chest pain my INR was 3.7 when my target range is 2.0-3.0. I skipped a dose and tonight will take 4 mg instead of the 8 I am directed. Tomorrow I will go take an INR. My gut instinct tells me to stop the warfarin and take aspirin and eat a lot of vitamin K. I love vegetables anyway. But it is very scary because I really don't know (and neither do the doctors as far as I'm concerned) how high risk I am for another clot. I'm 5 weeks past the procedure that could've caused it and over 4 months off of the birth control that I believe caused it. Don't know what to do. After skipping one dose of the warfarin I have not had one drop of chest pain today. And my joints don't hurt. I hate these drugs!!!!