Medications for treatment of Factor V Leiden Homozygous

Posted by mikey1854 @mikey1854, Apr 11 5:36pm

I have been diagnosed with factor v leiden homozygous (meaning I inherited the blood disorder from both my mother & father). I am currently being treated with warfarin. I have had PE's and DVT's, I currently have chronic blood clots in both my left & right legs which I have had for so long that they are like concrete and cannot be removed or stented. I was told by my vascular surgeon that he could do nothing for me or for the clots in my legs.
Does anyone else have this blood disorder and what medication(s) have been prescribed for your treatment?
I am having reactions to the warfarin and would like to have another option for the treatment of this disorder.
Thank you.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Colleen Young, Connect Director | @colleenyoung | Apr 13 9:21am

@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?

trki | @trki | Jun 30 4:31pm

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!

bmoregrl | @bmoregrl | Jul 6 11:47am

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.

susanlea21 | @susanlea21 | 15 hours ago

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 ....

Lori, Volunteer Mentor | @loribmt | 4 hours ago

In reply to @susanlea21 "I am 70 years old. Yes, I was diagnosed in 2004 with Factor V Leiden Disorder..." + (show)

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?

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