Medications for treatment of Factor V Leiden Homozygous

@mikey1854, there are several members talking about factor V Leiden like @mjthornton78 @robinpope2013 @patrizio @dawn83 @mntwin @wend1966 and others. While we wait for them to join this discussion and share their treament experiences, you may be interested in these related discussions:

- Anybody else have Factor V Leiden? https://connect.mayoclinic.org/discussion/anybody-else-have-factor-2-and-factor-v-leiden/
- Factor V Leiden Deficiency - Blood Clotting Condition https://connect.mayoclinic.org/discussion/factor-v-leiden-deficiency-blood-clotting-condition/

Did you doctor suggest a different blood thinner? Do you also use compression stockings?

I am homozygous for Factor V Leiden as well.
No history of clots at 72. My father had pulmonary embolisms.
I’ve been taking Xarelto 10 mg preventatively

I’m sorry that you’ve been the so much!

I’m 72 with 2 mutations Fsctor V Leiden and Prothrombin. Two clot events so far - Arm clot after a bad stick during my intake for colonoscopy and PE in saddle AND both lungs in July 2020 during Covid hospital shutdown protocols. I survived and am now on elloquis 2 x/day with no bad side effects in 5 yrs.

I am 70 years old. Yes, I was diagnosed in 2004 with Factor V Leiden Disorder Homozygous. My symptoms started with my pregnancies. The first in 1983 and the second child in 1985. I had superficial blood clots in both legs with both children.. Both babies were premature but healthy. I was treated with heparin for the blood clots at that time....... All ended well with my pregnancies, although it was some trying times.
Fast forward to the Present, I am on Lovenox Injection and have been since
around 2006. I wear compression stockings because of varicose veins.
The first medication I was on was Coumadin. My blood clots could not be controlled so my doctors went directly to Lovenox injections.
I have recently tried Eliquis but I unfortunately had side effects. So I am back on Lovenox and I am doing well
I also deal with autoimmune diseases as well......Rheumatoid Arthritis, Osteoporosis and hyperthyroidism .... Managing medications, diet and exercise is definitely a challenge ....

Welcome to Mayo Clinic Connect, @susanlea21 You’ve had quite a history with Factor V Leiden. Thank you for sharing your story with the forum. Your experiences with the different treatments, and finally landing on Lovenox for the win, might be helpful for anyone else who is recently diagnosed with this blood condition.

Since you weren’t initially diagnosed with the Factor V Leiden at the time of your pregnancies in the mid-1980s, did you have ongoing issues that led to the discovery in 2004?
Because this is a genetic disease do you remember anyone in your family, mom or dad’s side who may have had similar symptoms?

I'm excited to be a part of the Factor V Leiden Forum. I do hope my experiences will help someone who may be struggling for answers. I remember my struggles!

Before my pregnancies I remember not being able to take birth control pills. I developed superficial phlebitis on birth control pills and was placed on bed rest to elevate my legs and also use warm compresses. I was in my early 20s and was very confused why this would happen. I tried different birth control pills but always the same results.
I also had a problem with swelling in my legs. I couldn't sit for long periods of time without my ankles swelling. Airplane flights were especially difficult. All of these problems took place while I was in my early 20s.
When I was 49 a blood clot in my left groin area lead me to the ER and an extended stay in the hospital where I was diagnosed with Factor V Leiden (homozygous) Disorder.
Since then there has been a lot to process and learn about the Disorder.

At that point all pieces of the puzzle started falling together.
My Father died at a very young age (54) . He suffered from blood clots and was in and out of the hospital for heparin treatments. After months of tests and different studies he was diagnosed with lung cancer. At that time FVLD was not heard of or at least not mentioned to us.

I understand I have 2 genes, one from my Mother and one from my Father. I have 2 siblings. They only carry one gene and have never had any issues with blood clots.

Lovenox Injections have been the answer for me.
I'll be glad to answer any other questions if it helps someone.
Thank You for your time.

It’s fortunate that so much more is known know about Factor V Leiden than when you were going through all of those frightening experiences in your younger years! Thankfully you have found the sweet spot with your medications to prevent blood clots.

I’m sorry to hear that your father passed away early from this. And from my understanding it’s rare to have both Factor V Leiden genes from mother and father. So your siblings only carry one gene and you won the lottery carrying from both parents. Genetics are fascinating. I’m sure you’re concerned about your own offspring. Have they been tested?

My Hematologist assured me I didn't need to have them tested because if I carried both genes they would definitely have one gene. Then I think about my parents! Suppose their husband should carry one gene. They would be looking at the same situation with their daughters! My daughters both have 2 children and had no complications. So I have a positive attitude about Factor V Leiden effects that they may experience. Although, they have been schooled very well about Factor V Leiden and how it can show up quietly and unexpected ! I am so thankful they didn't experience those scary times like I did. I'm also thankful for modern medicine and research that I'm sure has given me bonus years to enjoy life!!! Genetics are complicated but at the same time very Fascinating!! I never dreamed I'd be a part of a rare genetic Factor V Leiden Disorder. But here I am at 70! The future is yet to be written!