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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nk4 | @nk4 | 2 days ago

I was getting ready to go to a quilt meeting when my calf was so hard and painful when a reality thought struck me ... I needed to go to the ER because this might be a blood clot. Upon arriving at the ER checkin and my stating my reason for being there, I was immediately transferred to a doctor who, then, sent me for imaging in my right leg. I had multiple clots from my ankles up to my groin area. At the hospital I was given two shots of Livenex and was told to get a starter pack of Eliquis (Apixaban). After the starter, a hematologist ordered me to take 5 mg Eliquis twice a day for 3 months only. All clots were cleared. However, 9 months later the symptoms started again, and I knew that I needed to be on Eliquis again. I was out of state and couldn't get the. help I needed, so I did some searching online for anything I could do to dissolve the clots until I could get back to my home. This was during the early Covid pandemic. I found a medical trial that was done with end of life Covid patients wherein it was found they all had blood clots in their legs. The epithelial lining of their veins were degrading and little protein bits were clumping together, forming clots. They started administering specific enzymes that dissolve proteins to these patients, and there was great improvement. Three substances were used in this trial, and the best one was lumbrokinase. Others included bromilaid and papain. They were given between meals so as not to be used for digestion and go directly to dissolving the blood clots. So I searched online for sources of lumbrokinase. I found one, ordered it, and began taking it. My result was almost immediate wherein the pain and hardness in my calf started easing. Then I called a hemaologist in my home town. It was a Zoom call with this MD, and after our conversation, I specifically asked if he'd do a coagulation study with me, and agreeing to do this, I made an appointment. Covid was rampant there and many were dying, so I wasn't going back there until I was fully vaccinated for Covid. In the meantime, the Lumbrokinase was helping. Back home, 13 vials of blood were taken for this study, and all but one were negative. I was diagnosed with Factor V Leiden. Being a genetic mutation and not knowing from which parent's lineage it came, I informed my other family members and recommended they get tested for this mutation. Both my daughters got checked and, fortunately, neither were positive for it. This time my MD put me on Eliquis for life! So I take 5 mg of Apixaban/Eliquis twice a day, and I keep some Lumbrokinase on hand for any supply problems with the Rx.
I, also, have had systemic Osteoarthritis and took Celebrex for 8 years, ending up with stomach ulcers and esophagitis. Had to go off Celebrex entirely and avoid acidic foods and caffeine. I was so hurting that I had to soak in a warm water bathtub every morning for at least 30 minutes, needing help to get in/out of it. I had serious pain from inflammation. At the same time my husband was diagnosed with pancreatic cancer, and my girls were searching online for alternative cancer treatments. One found these four supplements that, allegedly, worked synergistically to reduce inflammation. I got these and started giving them to him, later realizing that I should be trying these as well. This was in 2012. I have taken Curcumin, Boswellia, Ginger, and White Willow Bark every morning for the last 14 years because it helped me so much with NO side effects. However, they do thin blood, and with taking Eliquis, I do bruise very easily, and I have to be careful. The herbs take about 30 minutes to start working. It is important to know that one must use supplements that are standardized, meaning that each capsule contains the active ingredients. Cheap supplements lack this and are a waste of time and money. I hope my story helps others who are suffering with inflammation.

pianoman23 | @pianoman23 | Jul 8 4:47am

That’s curious that you were on Plavix only for a while. I believe that I will be on it for life.

cad43 | @cad43 | Jul 7 5:16pm

In reply to @pianoman23 "Clopidagrel is the other blood thinner I take I started it after the stent procedure. Pianoman23" + (show)

@pianoman23 I was on Plavix 18 years ago, after I had a cardiac stent, but only for 6 months. At the time, I was not on Eliquis. With the leg blood clot, though, only on Eliquis. Plavix together with Eliquis will increase the chances of bleeding, so if the doctor feels like it is absolutely necessary, be careful to avoid injuries, and monitor other symptoms. Good luck. My stent for my leg is in my back, they tell me. The clot went from my knee and upon through my pelvis.

pianoman23 | @pianoman23 | Jul 7 2:46pm

In reply to @cad43 "@pianoman23 After I had severe pain in my leg and ultrasound with extensive blood clots, I..." + (show)

Clopidagrel is the other blood thinner I take I started it after the stent
procedure.
Pianoman23

cad43 | @cad43 | Jul 7 9:40am

In reply to @pianoman23 "I was out walking and my leg swelled up. I was sent to a vein doc..." + (show)

@pianoman23 After I had severe pain in my leg and ultrasound with extensive blood clots, I had the procedure to remove clot and put in stent. I was put on Eliquis and hematologist said because I have Fac5Leiden clot factor, I have to be on it the rest of my life.

Lori, Volunteer Mentor | @loribmt | Jul 6 9:48pm

In reply to @pianoman23 "I was out walking and my leg swelled up. I was sent to a vein doc..." + (show)

Hi @pianoman23, That had to be a scary experience for you with your leg swelling after walking. Were you diagnosed with a clot in your leg or was this an overall heart related issue? Do you have Factor V Leiden that lead to the blood clot?

pianoman23 | @pianoman23 | Jul 6 9:12pm

I was out walking and my leg swelled up. I was sent to a vein doc and a hematologist who prescribed Eliquis. Later after an angioplasty and srent I was started on a second blood thinner.

donnacsec | @donnacsec | Jan 14 9:04am

Since I am writing to you (and not my daughter) I'm trying to piece together everything as I've been with her throughout all of it. She had a cryoptogenic stroke (ischemic) where the specific cause isn't found after extensive medical evaluation. Stroke of unknown origin. I did my research and found their are five different kinds of ischemic strokes. I don't believe it is paroxysmal artrial fibrillation as she has worn halter monitors at various times and now has an implantable loop recorder. We believe it is not atherosclerosis because she has had numerous CT scans, MRI's and then the transesophageal echocardiogram. It is just so hard to not to worry what happened, will it happen again. Thanks for any information shared. I am looking into stroke specialists now.

bmoregrl | @bmoregrl | Jan 13 4:17pm

Hi - you did not tell me if the strokes were clot based or bleeding based.

Please shoe me you know. If not clot based then Factor V Leiden may indeed not be the cause.

Look for a Stroke specialist consultant once you know this. Of course I’m curious too - please reply.
Jane

donnacsec | @donnacsec | Jan 12 11:26am

In reply to @bmoregrl "@donnacsec I’m sorry to hear your daughter suffered two strokes at a relatively young age. My..." + (show)

@bmoregrl

@donnacsec
I’m sorry to hear your daughter suffered two strokes at a relatively young age. My first question: were these bleeding strokes called hemorrhagic strokes, or caused by clots traveling from her lungs or elsewhere to her brain? This matters because you can research the cause of the ones she had which occur from different causes which I won’t detail here, but make a big difference.

Factor V Leiden and Prothrombin are two of many factors that are now diagnosed because of genetic testing. In 2002 when I was prepping for hysterectomy surgery, I told the doctor my mother had many clots in her legs that were diagnosed as “phlebitis” following her hysterectomy surgery in the 1960’s at age 46. She had many episodes of phlebitis before she died. I was concerned that would happen to me so I mentioned it to the surgeon. He said we could send a blood sample for genetic testing which seemed miraculous at the time. Results showed I carried two blood mutations that both are factors that foster/cause clotting: Factor V Leiden and Prothrombin ( I believe is also called Factor 2.)

It is known that estrogen patches and other menopause hormone drugs that include estrogen can cause clotting. So, I was advised NOT to go that route. I didn’t.

Flash forward, after I fell on black ice and broke the large upper arm bone called the humerus bone straight through. During recovery I developed a blood clot in the upper elbow where the arm bends. It caused my hand to swell after the normal swelling after a break receded. My orthopedic doctor’s PA was suspicious and doubted it was a clot because that typically does not happen as a bone heals. I consulted my primary doc who sent me for a scan and yes, it was a blood clot. He put me on xarelto first but that didn’t agree with me. I then took Elloquis which I tolerated well. He kept me on it 3 months then took me off the drug.

About 2 years later the episode I described in the first message occurred. The Pulmonary Embolisms (PE) were everywhere in both lungs and in the saddle in between the lungs. I had no pain before it, just an episode of feeling “out of sorts” the night before, and was a bit more winded walking my dog up a hill I walk up regularly with no problem. I went to bed early, woke up to pee a few hours later and got dizzy standing up from the commode, and felt I may throw up. I woke up my husband to tell him I was feeling sick and to keep an eye on me. In the morning I went to pee and this time was so woozy standing up I grabbed the doorframe telling myself “I’m ok, I’m okay” but apparently then fainted into the hallway. That never happened so I thought I should go to the ER. Good thing… I would have probably died that morning if I hadn’t been diagnosed and admitted to the ICU. The pulmonologist said I should have stayed on Elloquis after the last clot… and I’m now on it for life.

Strokes run in my family, so I’m super careful about my diet, exercise and drugs I take.

I hope this is helpful.
Be well,
Jane

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@bmoregrl
Thank you for sharing...For about two years my daughter complained about the feeling of not catching her breath, her heart beating rapidly, and a feeling of not just "right". Three different times she was taken to the ER by ambulance but each time they could find nothing wrong and sent her home thinking it was anxiety. This continued. She saw a cardiologist who did some testing found nothing. She saw a hematologist who monitored her because she had an elevated
D-Dimer. She participated in a COVID clinical test because they thought maybe COVID has caused her symptoms. She was referred to specialist, had scans of her legs and lungs. Had EEG's, EKG's. After the strokes she was diagnosed with Factor V Lieden. All the doctors believed this had nothing to do with the strokes. I remain cautiously concerned especially since she is a single mom of an 8 year old. The strokes are called something but cannot think of the name right now. It means...strokes without any known cause. It was after her stroke, that the neurologist saw evidence of a prior stroke. One in the balance center of her brain and the other in the language section. She was at work (as a teacher) and was taken by ambulance to the hospital. She was sent to the University of Pennsylvania hematology and was actually told there was nothing else they could test for. She has a trans-esophegeal scan of the back of her heart at Mt. Sinai Hospital in New York City. You name it, we did it! I still wonder if there is somewhere more to go....like to the Mayo Clinic.

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