Good evening,
I’m a 58 year old male and I’ve been diagnosed with Factor V Leiden. The doctor put me on a medication called Apixaban 10mg a day (apparently for the rest of my life)
I would like to know if I have to follow a special diet ie food, drink, medication and vitamins that I shouldn’t have.
Any other advice on how to handle this new diagnosis.
Thanks
I have Factor V Leiden and found out I had it when I was having pain in my right leg for about a week and then got shortness of breath and got worse as days went by. Mentioned to my doctor and she prescribed an inhaler because I do have bronchial asthma. Next day my breathing was getting so bad I went to the ER and they did some X-rays and admitted me due to blood clots in both lungs. Pulmonary Embolism. After tests I was diagnosed with the Factor V Leiden. I have been taking Xarelto blood thinner medication ever since.
Hello. How have you been doing with Xarelto? I started taking 10mgs a day about 8 months ago after developing a DVT after a 15 hour train ride and wearing compression hose that I feel CAUSED the clot since it formed under my knee right where the sock was tightest. Or could've just been from the long ride and not moving enough.
Discovered I carry Factor 4 (doubly heteroz.) when I was pregnant at 36 (now I'm 57) and had a DVT. Leg was swollen and painful but no one seemed to suspect a clot - luckily I read about DVT in What to Expect When You're Expecting!
Now I feel - and fear - that the Xarelto is causing new symptoms and side effects that have been popping up like trace blood in my urine, bladder urgency and discomfort off an on. I just stopped taking Xarelto since I'm very active and am curious to see if some of these symptoms go away. I'll probably go back on it but since my two clots were provoked I figure I'm safe if staying active...?
Interested in any shared experiences and happy to share mine!
I was diagnosed with Factor V Leiden in 2004, and my INR range is 2.5 - 3.0. I have been taking warfarin since my diagnosis, and I home check my INR once a week. I had been taking 6mg warfarin daily, and then my INR shot up to 4.0. My doctor reduced my warfarin dosage to alternating between 4mg and 5mg. For the past several weeks, my INR tests have been low, between 1.8 and 2.1. My doctor insists on continuing to alternate 4mg and 5mg, going from 3 days taking 5mg and 4 days taking 4mg to 4 days taking 5mg and 3 days taking 4mg. So far it hasn't helped to get my INR back in range. I have asked my doctor to let me try 6mg 2-3 days a week and 5mg the rest of the days, but he refuses to do that because he doesn't want to cause a sharp rise in my INR. In the meantime, my low INR results put me at risk for blood clots. I know for a fact that several of my ancestors have died due to blood clots that traveled into the brain and it worries me.
What can I do?
PEs and DVTs diagnosed Dec. 1st 2022. Heterogeneous Factor V test was positive. After release from hospital, I'm being treated with Eliquis. Was in the ER a week ago due to shortness of breath and surface vein thrombi. No new clots found in lungs, and my shortness of breath is likely the moderate virus I'm fighting off. But, I'm having a Lot of intermittent problems thinking, reading, etc and my anxiety is spiking, too. That, coupled with the surface vein thrombi might mean my body is still trying to make clots, and the meds are sludging them up, but it's still causing random reduced blood flow for periods of time. This can't be good for my brain or my organs.
I have Factor V Leiden. Diagnosed in 2003 when my daughter had a knee surgery and then developed a clot. They tested her and found she had Factor V. I then got tested because they said it was hereditary and I wanted to find out if it came from me. Sure enough, I have 1 gene affected and that was passed to her. Another one of my 3 birth children tested positive, as well as my only grandchild. My dad has since tested positive as well. I suffered a clot in 2007. That was my first ever. Never got one through all of my pregnancies or at any other time. I believe it was because I took a management job in a busy Planet Fitness, which requires you to stand for your whole shift, no matter how long. I have worked up to 21 hours straight during a couple of big sales. My regular shift was 10 hours long. Murder on the legs! It was about a month into managing that I formed a clot. Seems like it would be a physically active job, but a lot of it, asa manager, is standing with customer issues or time on the phone with customers and other businesses, always standing, especially in the beginning while learning the job. I worked there for 13 years and my legs always hurt terribly, but considerably less if I wore full length support stockings. After the first year, I wore the stockings always. I never developed another clot but even now, after leaving that job 3.5 years ago, my legs still hurt all the time, but the right leg, which is where I had the clot, hurts so much worse than the other. My clot was in my upper thigh and in a superficial vein, not in a deep vein. Drop bring is far worse.
I have heterozygous mutation Leiden factor 5 which means some elevated risk of clots for me but more importantly i pass the mutation to my kids. 2 of my 3 children tested for Leiden, oldest is also only single heterozygous mutation, but middle child has both gene mutations causing full Leiden factor 5. He's only 6. Leiden comes from my mom's side. She is single gene mutation carrier, her mother is full Leiden. My Gammy's brother, not sure which he has, but his son passed away on a family vacation from dislodged dvt, he was 40ish, that was about 7 years ago now. That is when the family discovered we had this hereditary disorder. Gammy has survived multiple strokes, triple bypass, abdominal aortic Stent, she currently lives with a football sized hernia on the left side to mid stomach which is helping hold the stent in place. She experienced bleeding somewhere, drs were never able to determine where the bleed was or where the blood went, lost 4 pints of blood after hospital admittance she was given 4 bags of blood and after a week off all her regular meds she developed multiple dvt's and has had to be on Eliquis ever since. She's 84. We're not sure which of her parents we inherited Leiden from. I still need to have my daughter tested for it, Dr's won't test until she is 6yrs old. Has anyone noticed anything during childhood I should watch for or be aware of risks for with Leiden? Thanks and positive vibes to everyone!
I have a very long and severe history with blood clots and on Monday they found my 30th PE. I have Factor V and Lupus Anticoagulation mutations. I feel like all I am doing these days is recovering from blood clots and the clots are getting worse and more severe each time. I am also becoming blood thinner resistant. My current PE happened while on Warfarin and Lovenox. I feel like I am the only person out here dealing with all of these clots all of the time.
Hi, all. Just diagnosed after a blood test yesterday. It seems 4 of my cousins have Factor V and were less than forthcoming in calling everyone. Speaking with my primary care guy today, but he's a bit of a quack. Just trying to sort out the "so what" of this. I'm 51, MWM, moderate alcohol use, no tobacco, in reasonably good shape. Just finding my way for me and my kids (yet to be tested, but ball's in motion). If you have any solid advice, I'm all ears!
Happy New Year to all.
Hi @gunshipgator, Welcome to Mayo Clinic Connect. What’s the old axiom…we can choose our friends but we can’t choose our relatives? Genetics are truly an interesting subject and in your case, you can see them at work in your family tree. With several of your cousins already diagnosed with this genetic mutation, Factor V Leiden, it is a good idea to have your kids tested just so they’re aware.
Factor V Leiden is a mutation in a clotting factor in the blood. It can increase the likelyhood of blood clots.
I’m sure you’re searching for information and if you haven’t already seen this, here is an article from our Mayo website about the condition, how it’s diagnosed and treatment options. The key is prevent blood clotting events. https://www.mayoclinic.org/diseases-conditions/factor-v-leiden/symptoms-causes/syc-20372423
Have you been seen by a hematolgist who specializes in blood disorders? Was this discovered through a random physical or did you have a blood clot??
Hi, all. Just diagnosed after a blood test yesterday. It seems 4 of my cousins have Factor V and were less than forthcoming in calling everyone. Speaking with my primary care guy today, but he's a bit of a quack. Just trying to sort out the "so what" of this. I'm 51, MWM, moderate alcohol use, no tobacco, in reasonably good shape. Just finding my way for me and my kids (yet to be tested, but ball's in motion). If you have any solid advice, I'm all ears!
Happy New Year to all.
Connect
Connect
Like
Helpful
Hug
Good evening,
I’m a 58 year old male and I’ve been diagnosed with Factor V Leiden. The doctor put me on a medication called Apixaban 10mg a day (apparently for the rest of my life)
I would like to know if I have to follow a special diet ie food, drink, medication and vitamins that I shouldn’t have.
Any other advice on how to handle this new diagnosis.
Thanks
My wife has it, found when she had a stroke in '16. She's been taking Clopidigrel since then, does not seem to be a factor in her health otherwise.
-
Like -
Helpful -
Hug
1 ReactionHello. How have you been doing with Xarelto? I started taking 10mgs a day about 8 months ago after developing a DVT after a 15 hour train ride and wearing compression hose that I feel CAUSED the clot since it formed under my knee right where the sock was tightest. Or could've just been from the long ride and not moving enough.
Discovered I carry Factor 4 (doubly heteroz.) when I was pregnant at 36 (now I'm 57) and had a DVT. Leg was swollen and painful but no one seemed to suspect a clot - luckily I read about DVT in What to Expect When You're Expecting!
Now I feel - and fear - that the Xarelto is causing new symptoms and side effects that have been popping up like trace blood in my urine, bladder urgency and discomfort off an on. I just stopped taking Xarelto since I'm very active and am curious to see if some of these symptoms go away. I'll probably go back on it but since my two clots were provoked I figure I'm safe if staying active...?
Interested in any shared experiences and happy to share mine!
I was diagnosed with Factor V Leiden in 2004, and my INR range is 2.5 - 3.0. I have been taking warfarin since my diagnosis, and I home check my INR once a week. I had been taking 6mg warfarin daily, and then my INR shot up to 4.0. My doctor reduced my warfarin dosage to alternating between 4mg and 5mg. For the past several weeks, my INR tests have been low, between 1.8 and 2.1. My doctor insists on continuing to alternate 4mg and 5mg, going from 3 days taking 5mg and 4 days taking 4mg to 4 days taking 5mg and 3 days taking 4mg. So far it hasn't helped to get my INR back in range. I have asked my doctor to let me try 6mg 2-3 days a week and 5mg the rest of the days, but he refuses to do that because he doesn't want to cause a sharp rise in my INR. In the meantime, my low INR results put me at risk for blood clots. I know for a fact that several of my ancestors have died due to blood clots that traveled into the brain and it worries me.
What can I do?
-
Like -
Helpful -
Hug
1 ReactionPEs and DVTs diagnosed Dec. 1st 2022. Heterogeneous Factor V test was positive. After release from hospital, I'm being treated with Eliquis. Was in the ER a week ago due to shortness of breath and surface vein thrombi. No new clots found in lungs, and my shortness of breath is likely the moderate virus I'm fighting off. But, I'm having a Lot of intermittent problems thinking, reading, etc and my anxiety is spiking, too. That, coupled with the surface vein thrombi might mean my body is still trying to make clots, and the meds are sludging them up, but it's still causing random reduced blood flow for periods of time. This can't be good for my brain or my organs.
Anyone else have this issue? Thoughts?
I have Factor V Leiden. Diagnosed in 2003 when my daughter had a knee surgery and then developed a clot. They tested her and found she had Factor V. I then got tested because they said it was hereditary and I wanted to find out if it came from me. Sure enough, I have 1 gene affected and that was passed to her. Another one of my 3 birth children tested positive, as well as my only grandchild. My dad has since tested positive as well. I suffered a clot in 2007. That was my first ever. Never got one through all of my pregnancies or at any other time. I believe it was because I took a management job in a busy Planet Fitness, which requires you to stand for your whole shift, no matter how long. I have worked up to 21 hours straight during a couple of big sales. My regular shift was 10 hours long. Murder on the legs! It was about a month into managing that I formed a clot. Seems like it would be a physically active job, but a lot of it, asa manager, is standing with customer issues or time on the phone with customers and other businesses, always standing, especially in the beginning while learning the job. I worked there for 13 years and my legs always hurt terribly, but considerably less if I wore full length support stockings. After the first year, I wore the stockings always. I never developed another clot but even now, after leaving that job 3.5 years ago, my legs still hurt all the time, but the right leg, which is where I had the clot, hurts so much worse than the other. My clot was in my upper thigh and in a superficial vein, not in a deep vein. Drop bring is far worse.
I have heterozygous mutation Leiden factor 5 which means some elevated risk of clots for me but more importantly i pass the mutation to my kids. 2 of my 3 children tested for Leiden, oldest is also only single heterozygous mutation, but middle child has both gene mutations causing full Leiden factor 5. He's only 6. Leiden comes from my mom's side. She is single gene mutation carrier, her mother is full Leiden. My Gammy's brother, not sure which he has, but his son passed away on a family vacation from dislodged dvt, he was 40ish, that was about 7 years ago now. That is when the family discovered we had this hereditary disorder. Gammy has survived multiple strokes, triple bypass, abdominal aortic Stent, she currently lives with a football sized hernia on the left side to mid stomach which is helping hold the stent in place. She experienced bleeding somewhere, drs were never able to determine where the bleed was or where the blood went, lost 4 pints of blood after hospital admittance she was given 4 bags of blood and after a week off all her regular meds she developed multiple dvt's and has had to be on Eliquis ever since. She's 84. We're not sure which of her parents we inherited Leiden from. I still need to have my daughter tested for it, Dr's won't test until she is 6yrs old. Has anyone noticed anything during childhood I should watch for or be aware of risks for with Leiden? Thanks and positive vibes to everyone!
-
Like -
Helpful -
Hug
1 ReactionI have a very long and severe history with blood clots and on Monday they found my 30th PE. I have Factor V and Lupus Anticoagulation mutations. I feel like all I am doing these days is recovering from blood clots and the clots are getting worse and more severe each time. I am also becoming blood thinner resistant. My current PE happened while on Warfarin and Lovenox. I feel like I am the only person out here dealing with all of these clots all of the time.
-
Like -
Helpful -
Hug
3 ReactionsHi @gunshipgator, Welcome to Mayo Clinic Connect. What’s the old axiom…we can choose our friends but we can’t choose our relatives? Genetics are truly an interesting subject and in your case, you can see them at work in your family tree. With several of your cousins already diagnosed with this genetic mutation, Factor V Leiden, it is a good idea to have your kids tested just so they’re aware.
Factor V Leiden is a mutation in a clotting factor in the blood. It can increase the likelyhood of blood clots.
I’m sure you’re searching for information and if you haven’t already seen this, here is an article from our Mayo website about the condition, how it’s diagnosed and treatment options. The key is prevent blood clotting events.
https://www.mayoclinic.org/diseases-conditions/factor-v-leiden/symptoms-causes/syc-20372423
Have you been seen by a hematolgist who specializes in blood disorders? Was this discovered through a random physical or did you have a blood clot??
-
Like -
Helpful -
Hug
3 ReactionsHi, all. Just diagnosed after a blood test yesterday. It seems 4 of my cousins have Factor V and were less than forthcoming in calling everyone. Speaking with my primary care guy today, but he's a bit of a quack. Just trying to sort out the "so what" of this. I'm 51, MWM, moderate alcohol use, no tobacco, in reasonably good shape. Just finding my way for me and my kids (yet to be tested, but ball's in motion). If you have any solid advice, I'm all ears!
Happy New Year to all.