Anybody else have Factor V Leiden?

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?

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!

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.

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

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,

Thanks for the reply.

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?

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

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!

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