Anybody else have Factor V Leiden?

Posted by patientk @patientk, Jun 24, 2021

Anybody else have factor 2 and factor v leiden what has been your expierence with them

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@magnoliamimi

Yes, in 2017...Memorial Day I went to the hospital ER feeling sick but not sick enough to go to the hospital, I thought. But my late husband thought otherwise. I had been experiencing shortness of breath. But attributed this to an upcoming birthday! After several tests at the hospital, I was told I would be hospitalized. I had dvt and PE's. I looked at the dr. and said..."Am I going to die?" He said "No...but if you had not gotten here in a timely manner, you could have experience a heart attack, stroke....or even death. For 3 days, I had both arms inserted with IV's and one of the medications was Heparin which dissolves clots. Because I had not been in an accident, gone on a long flight where I could not move around, had surgery (but I had cataract surgery but they said during cataract surgery one is not sedated very long), a hematologist was called in. She diagnosed me with Factor V Leiden. Sent me home with Xarelto which broke me out in a rash and then changed to Eliqus. I have been fine since but don't like being on a blood thinner....which she said I will be on indefinitely.

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Hi, I have Factor V Leiden as well and am on Eliquis for life. Blood clot portal vein of liver (no liver damage thankfully.)…
I too dislike (to put it mildly) the lifelong need for Eliquis and am frightened because of the chance of severe or deadly bleeding if injured. Next CT in April to see if clot has cleared. I picture it being absorbed safely by my body when I think of it. We are in this together and we will make it! I have faith that it’s just a matter of time before the next amazing blood thinner that won’t pose a severe risk of bleeding is on the market! Science rocks!
We’ve got this!
I’m shooting for 15,000 steps a day and minimum of 10,000.

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@colleenyoung

Hi @ducklynn, it can be scary to learn that you have factor V Leiden. As you live with knowing you have this, hopefully you will become less fearful of injury. You might appreciate this related discussion:
- Factor V Leiden: What exercise helps with blood clots? What to avoid?
https://connect.mayoclinic.org/discussion/factor-v-leiden/

I'm also tagging fellow members like @dhutch @maribel8 @emarcatkin @sps488 who have experience with factor V Leiden and Eliquis, although I don't know if they experience headaches.

Did your headaches only start with the medication or since you had the virus last week? Have they subsided?

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The headaches are gone, must have been the virus. Thank you so much for your reply and the additional link! Have a wonderful weekend!

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@ducklynn

Diagnosed w/ portal vein clot after CT for stomach pain (ulcer) in September. Hematologist did tons of blood tests to find out why I got the clot. Factor V Leiden was found. Started 5mg Eliquis 2x’s a day. I’m so scared of head injury or getting cut accidentally. Lately headaches at top of head but I picked up a virus last week so not sure what’s causing the headache. Anybody else on Eliquis w/headache?
Thanks in advance & hugs to all of you!

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Hi @ducklynn, it can be scary to learn that you have factor V Leiden. As you live with knowing you have this, hopefully you will become less fearful of injury. You might appreciate this related discussion:
- Factor V Leiden: What exercise helps with blood clots? What to avoid?
https://connect.mayoclinic.org/discussion/factor-v-leiden/

I'm also tagging fellow members like @dhutch @maribel8 @emarcatkin @sps488 who have experience with factor V Leiden and Eliquis, although I don't know if they experience headaches.

Did your headaches only start with the medication or since you had the virus last week? Have they subsided?

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Diagnosed w/ portal vein clot after CT for stomach pain (ulcer) in September. Hematologist did tons of blood tests to find out why I got the clot. Factor V Leiden was found. Started 5mg Eliquis 2x’s a day. I’m so scared of head injury or getting cut accidentally. Lately headaches at top of head but I picked up a virus last week so not sure what’s causing the headache. Anybody else on Eliquis w/headache?
Thanks in advance & hugs to all of you!

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@reginarenaye

Hey there!

I was diagnosed with Factor V Leiden 3 years ago (I'm currently 39) and I have to take Warfarin for the rest of my life. Long story short - I found out I had it after developing bilateral PE (multiple clots in both lungs).

In my opinion, Warfarin is a high maintenance drug. What I mean by that is you may to have to get your INR checked (via blood draw) on a regular basis and based on what your INR is you may have to adjust your dosage. The therapeutic range for my INR is 2.0 - 3.0; if I am lower than 2, I will need to increase my dosage and if I am higher than 3, I will need to reduce my dosage. Your doctor may set you up with an anti-coagulation clinic; if he/she does, then the clinic will be the one to manage your dosage, blood draws, etc.

The main thing regarding your diet is you will have to be mindful of your Vitamin K intake (green leafy veggies like spinach, kale, etc.) because Vitamin K can affect your INR. Its super annoying to me, but if you are able to manage that than you should be. Its similar to how someone with diabetes have to watch their sugar/carb intake.

Hope this helps; let me know if you have any other questions!

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Hey there!
Thanks for the informations as they are very helpful.
Can i take other vitamins like B, C D?

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@patrizio

Good evening,
Couple days ago i joined the group under the impression (my doctor infos) that i had Factor V Lieden. This morning i made a trip to the hospital following an episode of pain in my calve. They did an ultrasound and find out that i had a minor superficial blood clot (i had one two years ago same place).Ive been taking Apixaban 10Mg every day and now they want to switch my medication and put me on Warfarin.
Can i have some information on that medication ie safer than Apixaban and what my life is going too look like once i'm on it.
But the funny story of the day is that my doctor made a mistake when he told me that I had Factor V Lieden....
I don't have that disorder but i have Prothrombin gene mutation factor 2.
Can you please also provide me with some information with that disorder and what can i eat and not.
Thanks

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Hey there!

I was diagnosed with Factor V Leiden 3 years ago (I'm currently 39) and I have to take Warfarin for the rest of my life. Long story short - I found out I had it after developing bilateral PE (multiple clots in both lungs).

In my opinion, Warfarin is a high maintenance drug. What I mean by that is you may to have to get your INR checked (via blood draw) on a regular basis and based on what your INR is you may have to adjust your dosage. The therapeutic range for my INR is 2.0 - 3.0; if I am lower than 2, I will need to increase my dosage and if I am higher than 3, I will need to reduce my dosage. Your doctor may set you up with an anti-coagulation clinic; if he/she does, then the clinic will be the one to manage your dosage, blood draws, etc.

The main thing regarding your diet is you will have to be mindful of your Vitamin K intake (green leafy veggies like spinach, kale, etc.) because Vitamin K can affect your INR. Its super annoying to me, but if you are able to manage that than you should be. Its similar to how someone with diabetes have to watch their sugar/carb intake.

Hope this helps; let me know if you have any other questions!

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@patrizio

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

Jump to this post

Good evening,
Couple days ago i joined the group under the impression (my doctor infos) that i had Factor V Lieden. This morning i made a trip to the hospital following an episode of pain in my calve. They did an ultrasound and find out that i had a minor superficial blood clot (i had one two years ago same place).Ive been taking Apixaban 10Mg every day and now they want to switch my medication and put me on Warfarin.
Can i have some information on that medication ie safer than Apixaban and what my life is going too look like once i'm on it.
But the funny story of the day is that my doctor made a mistake when he told me that I had Factor V Lieden....
I don't have that disorder but i have Prothrombin gene mutation factor 2.
Can you please also provide me with some information with that disorder and what can i eat and not.
Thanks

REPLY
@patrizio

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

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Welcome to Mayo Connect @patrizio and @wend1966! Interesting that you both joined within a few days of each other. I know it can be really disconcerting when we receive a diagnosis and have no idea what to expect going forward. We do have a number of members in the the forum who also are living with Factor V Leiden and have shared their experiences with each other.
Let me introduce you fellow members @piglit @sherohio @susangourdlady @mlemieux @hollyteachet @patientk and others in this support group. Here’s the link:
Anybody else have Factor V Leiden?
https://connect.mayoclinic.org/discussion/anybody-else-have-factor-2-and-factor-v-leiden/

@wend1966, you were diagnosed 30 years ago, which has to feel pretty encouraging for @patrizio! Thank you so much for sharing your experience! Replies like yours makes Connect such a valuable source of support for others.
@patrizio, when were you diagnosed? Were you having any symptoms which led to your diagnosis?

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@patrizio

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

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Thanks for the reply.

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@patrizio

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

Jump to this post

Hi,
I am 56 years old female. I was diagnosed with Factor V Leiden 30 years ago. I inherited it from my Father I was told. When diagnosed with it I saw a Hematogist Specialist who put me on aspirin 100mcg. I haven't looked back. No blood clots at all since I saw the Specialist. I was told to watch my diet and not drink alcohol all of the time. I don't drink anyway. Also told not to play contact sports because of severe bruising. My advise to you if you feel unwell see your GP or Specialist. Also a dietitian is a good idea to be referred to about your diet. I hope that this advice helps you,

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