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I am 76 years old. I have factor V Leiden mutation...

  • I am 76 years old. I have factor V Leiden mutation and was just put on Xarelto. I was on Coumadin first then warfrin for over 50 years. I have been on xarelto for one month. I'm nervous since there is no way to check how thin your blood is. I've already had one stroke while on warfin by that was quite a while. I do enjoy eating more veggies but not enough to have another stroke or hear attack. I do have other health but I go to a hematologist for my factor V Leiden mutation. He put me on Carleton and said I should come back in a year. Please any advice would be appreciated.

    Post created 5 months 9 hours ago

Comments

  • Hi Mary,

    Hi Mary,
    Yes, Factor V Leiden is relatively new. They just found out about it in the 90's I believe and it does not get tested for unless specifically looking for it. Until I was diagnosed in 2000, no one in my family had been tested before. We later found out everyone on my father's side of the family has it as well. My dad can remember his Grandpa's legs being wrapped when he was young and his dad had a bad fall with a major hematoma and eventually had to be taken off of life support after no improvement for some time. We are so lucky that new disorders are being found and treated each day. With the help of the Lord as well. Amen.

    4 months 2 weeks ago

  • I have Factor V Leiden

    I have Factor V Leiden deficiency, May Thurner syndrome, and Antithrombin III. I have been on Coumadin since I was 15 when I received an 8 inch DVT from my pelvis to mid thigh along with many pulmonary emboli. I received new clots years later while on Lovenox (waiting for other surgeries).

    However, my baby sister had a clot and was put on Xarelto. She received another clot while on Xarelto and was put on Lovenox for the time being. I wish her hematologist would switch her to Coumadin like mine has me on. I know everyone interacts differently, depending on their disorder and which anticoagulant affects blood plasma, etc.

    I prefer Coumadin because it can be checked and I have not had issues with it. Besides when my 10 year old IVC filter fractured off into my heart and lungs, (which I didn't even know I had), but Coumadin wasn't at fault. The surgeon that placed it without notifying me is.

    If you are unsatisfied with the current medication you are on, you can always receive a second opinion from another hematologist. No one knows how your body responds like the patient him/herself. You just have to find a doctor that will actually listen and cares. In Houston, Gulf States Hemophilia and Thrombophilia Center is great. Good luck and God bless everyone!

    4 months 2 weeks ago

  • Hello Harriet,

    Hello Harriet,

    My name is Sha Adams and with your permission may I suggest an alternative medicine to your health concerns. I believe that the body is designed by our Creator, to heal itself. All it needs is a boost from natural ingredients. As a naturopathic specialist, I prescribed various juices, that consist of vegetables, fruits, grains and spices.

    Condition: Xarelto - V Leiden Mutation

    Natural remedy: kale, mustard, collard, turnip greens, broccoli, Brussel sprouts, celery, spinach, asparagus, one teaspoon of garlic, one teaspoon of onions(grind) one teaspoon of cumin spice. Blend all ingredients with Carrots Juice. Drink it throughout the day. What I prescribed is a remedy whose objective is to monitor/prevent blood clots within the blood vessels.

    Nutrients involved: Vitamin E, Copper

    Give us a chance Harriet, we are here for you.

    Personal note: Everything that I have shared with all ehealthme.com members, regarding alternative medicine for he/she health problems. Well guess what, supermarkets and online shopping are selling the same juices, I put together for you; and they are not cheap

    4 months 3 weeks ago

  • I'm 80 years old. In October

    I'm 80 years old. In October 2015 I had a blood clot on my lungs After 4 days in the hospital, I was put on xarelto . After a few months my legs hurt so much that I could not walk more than a few minutes. my platelets went from about 380 to 0ver 600. My family dr. sent me to an orthopedic dr. X rays and dvt tests, were all normal. In march 2016 I saw my himothalagist. I asked him to change my blood thinner. I put me on Eliquis 2.5 mg twice a day. A month later, my leg pain was gone. But he performed a bone marrow test and I tested positive for Essential thrumbosithminia. and JAK@.I immediately was put on Hydroxyurea 500mg. Started one a day and now up to 2 a day. Finally after 4 months my platelets are down in the 400 range. I have done a lot of research" in my condition and there is no cure. I feel OK . I walk A few miles almost every day. I saw my himothalagist last week and he thinks that I will not have oneother blood clot. I hope he is right. But I have to take the blood thinner and the Hydroxyurea for the rest of my life.

    4 months 4 weeks ago

  • I am 78 yrs old and was first

    I am 78 yrs old and was first put on Warfrin in 2012 for 5 DTV's. Once Xarelto was approved for use by those with the Factor V Leiden in 2015, I was put on it. I had a home meter to perform weekly checks on thickness that was reported to my hematologist. He would then make any adjustments to my dosage. I too was apprehensive about not having blood checked, etc., but have enjoyed not having to restrict my diet of green vegetables, being stuck weekly, and constant adjustment of medication, so all that overrides any other fears I might have. My main objection with all blood thinning medications is that you can't take certain pain medications, such as Aleve. Aleve was my go-to med for arthritis, but have not been able to take it for 4 yrs now and other meds just don't do it for me. I'm certainly not a doctor, nor familiar with your physical conditions, but would "think" that is was possible that Warfrin dosage got too low and allowed the stroke. If Xarelto is all that it claims (and we have to have faith that, at this point, it is) then the consistency in regulating the blood gives more hope that strokes can be prevented. I had 3 clots in my left leg and one in each lung, so they inserted the vena cava (thankfully, not one of the bad brands) in my stomach area to catch any new clots that may form or break off from the old ones. I'm not familiar with Carleton and could not find any info on it, so I don't know how it fits in the overall picture. I guess the only thing we can do is do as much research as we can on all the drugs we take and place our faith in the Lord do lead us in the right direction as to what we want to take. I'm sure that you know that Factor IV is a special disorder so not all blood thinners can be taken for it. I did not know I had this condition until 2011, but when they reviewed my family history, I realized that several perfectly healthy relatives on my father's side had died of blot clots, a brother at 41 yrs., so that alerted them to possibility of the Factor IV. Since then we have learned that one of my sons, who suffers from phlebitis and the other who has had DVT's also have the Factor IV. Their's manifested some 15 yrs. ago as the result of injuries, but was not tested at that time. Mine manifested much later in life. I know I have not been much help to you, but it is good to hear of other's concerns. Good Luck!!

    5 months 7 hours ago

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