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White lion yawn  halinkaii wrote almost 2 years ago

my INR has never been stable for 4 yrs. I had 2- abdominal bi-pass surgeries in 7 months. Main aorta blocked with blood clots. Taking warfarin & 81 MG aspirin. Is there anything else out there to help me???

Category: Blood Clots

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  Blood Clot Recovery Network  (website) - (6) - posted almost 2 years ago

I had an ongoing unstable INR until I started taking a doctor-prescribed vitamin K supplement. It has been proven that taking a consistent amount of vitamin K actually helps to stabilize the INR and in my situation, it did just that. I have been stable for over a year with only small fluctuations, not enough to be concerned about. I take warfarin, aspirin and vitamin K every day.

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Eagle  aapup - - posted 4 months ago

have home health care for 1 month after knee Replacement surgery

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White lion yawn  halinkaii - (2) - posted almost 2 years ago

I am sorry about voting this down. New to this site.
Appreciate your reply.
My Dr. never even mentioned Vitamin K, and when I did, said the correct diet should do it. I am a small and moderate eater and drinker, but but find counting difficult. Will approach him again about Vit. K. What's a good amount to take on daily basis?

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  Blood Clot Recovery Network  (website) - (6) - posted almost 2 years ago

My dosage is 100 MCG, but it would be different for everyone depending on the amount of warfarin you are taking, height, weight, etc. I would recommend you talk to your doctor about what dosage YOU need. The important part is creating a consistent baseline in your system. Best of luck during your treatment!

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  APS Foundation of America  (website) - (3) - posted almost 2 years ago

Well, a consistent amount. So, if that is a McDonald's Salad for example. Make it that size salad daily. Learn the amount of Vitamin K in your greens to get an idea so you are consistent. The nice thing being on low dose Vitamin K, I can eat a ton today, none tomorrow, a little the next day, have some wine the follow day and it doesn't really mess my INR up. Now, cranberries and cranberry products are my exception - even when being consistent.

Here is a site to help you with the Vitamin K levels: http://ndb.nal.usda.gov/ndb/search/list

Yes, we are new to the site as well. :)

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  APS Foundation of America  (website) - (3) - posted almost 2 years ago

One, the finger stick machine is NOT accurate in APS patients, period. That is part of the problem. Vein draw ONLY. Citations: http://www.apsfa.org/fingerstick.htm I have Lupus, APS and possible MS. I had a stroke due to that lovely little finger stick machine.

Now, after that, if it still doesn't settle, I would discuss with your hematologist low dose Vitamin K. My INR is stable as a rock now and I can eat what I want within reason. Citation:

Using Vitamin K to Smooth-Out Fluctuating INRs

If you walk into a dark room and switch on a 3-way light you notice a huge increase in the amount of light. If you switch to the next higher level, you do not notice as much change even though the increase is the same number of watts.

It appears that a similar thing happens when someone takes in very little vitamin K from eating vegetables. If this person then gets a little more vitamin K than usual, the INR can be thrown off. To get around this, some warfarin managers have tested giving people a known amount of vitamin K. Then they managed whether or not the INRs became more consistent.

A study done in the UK followed 70 people who had unstable INRs. They were divided into two groups – those getting 150 mcg of vitamin K daily and those getting a placebo. The people getting the vitamin K had more consistent INRs than the people getting the placebo. Each person’s INRs for 6 months on the study were compared with their INRs for 6 months before the study.

It appears that taking a known amount of vitamin K daily and adjusting the warfarin dose upward to accommodate this, results in more stable INRs.

Reference: Sconce E. et al. Vitamin K supplementation can improve stability of anticoagulation for patients with unexplained variability in response to warfarin. Blood. 2006; Nov 16.

Christina "Tina" Pohlman
President, Executive Director, Co-Founder & Lupus/APS Patient ~ BS Public Health Education
APS Foundation of America, Inc
Website Address: http://www.apsfa.org
Facebook Fan Page: http://www.facebook.com/APSFA

The APS Foundation of America, Inc is a 501(c)3 Public Charity. The APS Foundation of America is not intended to replace standard doctor-patient visits, physical examination, and medical testing. Information given to members are only an opinion. All information should be confirmed with your personal doctor. Always seek the advice of a trained physician in person before seeking any new treatment regarding your medical diagnosis or condition. Any information received from APS Foundation of America is not intended to diagnose, treat, or cure. This site is for informational purposes only.

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White lion yawn  halinkaii - (2) - posted almost 2 years ago

Value your advice.
I used to get my blood draws from the vein at the lab, and my veins got scarred and harder to work with. The hospital that did my INR tests uses a good finger stick machine and recommended to buy the same unit for home use. You can see why we all have a hard time with this.
No one to this point has recommended to take Vit K; I was actually told to make sure none of my vit. and supplements contained any Vit.K in them. So, I will have to pursue that with my doctor again. Thank you.

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Wolf  Pavan - - posted almost 2 years ago

I would have tests done to see if you have any of the following: Antiphospholipid Syndrome (also called Hughes syndrome), Antithrombin III deficiency, Factor V Leiden, Protein C Deficiency, Protein S Deficiency.

If you have Antiphospholipid Syndrome - then you should do vein draws based on the APS Foundation's advice. I'm sorry you're scarring from vein draws, but as the APS foundation mentioned above, your INR reading will be more accurate.

Having inaccurate INR readings can cause serious consequences. If your INR is normal, and the meter gives an inaccurate reading due to you having APS, then the doctor can give you more or less warfarin than you need and that can lead to a bleeding or clotting episode.

So in conclusion, find out what you have, and if you have APS, then do vein draws to get the most accurate INR readings.

Best of luck halinkaii.

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  Dr Shah Faisal Ahmad  (website) - (18) - posted almost 2 years ago

There might be a number of reasons as to why your INR is not remaining stable. May be you are taking diets low in Vitamin K, you are taking some over the counter medications (herbs, supplements), or you recently added a new prescription medication. Also, the dose and time of taking your prescribed medications for blood clots, as well as the shelf life of the Warfarin you are consuming affects your INR. Since you have mentioned that you underwent 2 surgeries in the recent past, the stress that your body has experienced may interfere with your INR testing.

Now, whatever be the cause of your INR unstability issue, the solutions are many. You should ensure taking similar (and prescribed) doses of Warfarin each day. Ensure that you are taking a good brand of your medication. You should monitor your INR at home and should take daily supplementation of Vitamin K (in case your food doesn't contain it). Finally, if the Warfarin still doesn't work, discuss with your doctor about switching to a new oral "blood thinner" medication. This will surely help you out.

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  APS Foundation of America  (website) - (3) - posted almost 2 years ago

Finger stick machines are not accurate in APS patients especially with the Lupus Anticoagulant. Citation: http://www.apsfa.org/fingerstick.htm Options since he is scarring that could be discussed with his doctors are a port. But a finger stick machine would only make his INR even more unstable.

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White lion yawn  halinkaii - (2) - posted almost 2 years ago

Dr. Ahmad,
Thank you so much for insight and input on my super unstable INR readings.
Forgot to mention 2 Pulmonary Embolism in the last 3 yrs. as well.
2 Bi-pass surgeries in 7 months only last year, and getting ready for another one. How many and how often can a person have & survive in a lifetime?
Sincerely appreciate your time.
halinkaii
halinkaii

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  Dr Shah Faisal Ahmad  (website) - (18) - posted almost 2 years ago

You are welcome @halinkaii. It doesn't matter how many episodes of embolisms or how many surgeries you have had in the past, as long as you stick to your prescribed medications in terms of correct dosage and timing of taking the medicine, you will be fine. As long as you take a diet rich in/supplements of "Vitamin K", you will be super-fine. Also, the most important factor is the frequent monitoring of your INR that would help you track your progress and let you be at ease. So, just forget what happened to your health in the past, change what you are doing right now to make yourself better and thus, you would be able to safeguard the future of your health.

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White lion yawn  halinkaii - (2) - posted almost 2 years ago

Once again I thank you for your precious time and appreciate your input. So far, I have done nothing wrong. Never smoked. Because I was diagnosed with Lupus anticoagulant disorder with anticardiolipin antibodies, i have more trouble than most. So, I purchased my own unit for frequent monitoring of my INR, set my alarm to take my meds at the same time each night. All my life used to overdose on greens. Now, on warfarin, I am careful with those. Possibly the hardest would be to monitor the intake of vitamin K. What is the easiest way to make sure you get enough and not too much? or will this blood disorder always give me yo-yo readings. I am getting ready for a 3rd open gut bi-pass surgery in one year in spite of all these precautions. Is that normal?

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  Dr Shah Faisal Ahmad  (website) - (18) - posted almost 2 years ago

Well halinkaii, it is awesome that you are taking such a great care of your health and sticking to the timings of your medications. Don't worry so much about the overdose of Vitamin K, make a list of items that contain this vitamin. Then just keep feeding yourself in small quantities of those food items. Keep doing this on a regular basis. Not only would you ensure that you are taking vitamin K from different sources, but you would also ensure this way the proper levels of this vitamin are reaching your body. However, the mainstay of treating your illness is the stickiness to your medications and avoiding other medical prescrption/over the counter drugs (for other health conditions) during the time you are taking the Warfarin.

Well, getting a third surgery in one year as such is not normal. Talk to your healthcare provider as to why you are getting these many surgeries.

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  APS Foundation of America  (website) - (3) - posted almost 2 years ago

APS can cause the blockages. We have plenty of clients with multiple surgeries in the same areas due to reclotting. Scarring increases the clotting more as there is no longer a clear path for the blood to flow. CAPS may also be a consideration. Also there is the question what they have done to control the antibodies.

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Puppy sleep  Cindy in nj - (4) - posted over 1 year ago

Any information on capsicum, krill and or nattokinase for keeping blood thin/avoiding clots, etc? I have read about these on Other sites as to be beneficial? Any truth? To this?

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  APS Foundation of America  (website) - (3) - posted over 1 year ago

Written by: Stephan Moll, MD "Nattokinase is not a substitute for Warfarin! If you take it – don't count on it having any clinical effect. It has also not been studied regarding its safety profile, particularly when taken together with Warfarin or aspirin. " http://www.apsfa.org/docs/APSFAVol6Summer2007.pdf

There is no alternatives to prescription medications that are tried and true. http://www.apsfa.org/links/links32.htm

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