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37yr old female, factor 5, on eliquis 7 years. Can I stop eliquis?
Hello,
I am a 37 year old female.
7 years ago I went to hospital for what appeared as asthma. After testing and D dimer we found out my blood count was thro the roof and they didn't understand how I was alive. I was hospitalized for pulmonary embolisms in both lungs for 6 days. During bubble test study they found a small hole in my heart that allows bubbles after 3 beats. Nothing was done bc I was only 30yrs old and fixing it while on thinners wasn't an option at the time.
I was Released and started eliquis 5gm. Had about 8 TIA strokes, no lasting damage except for memory on some things and had to relearn now to walk bc my right side of my body wasn't working but after a few days my motor skills returned..
7 years later.. Been healthy since. Im now
excersizing, eating good, no birth control pills. My doctor and hematologist said I can stop taking the eliquis and see how my body does. I'm scared but feel my body is telling me to make a change bc my body isn't feeling good lately.
Do I need to supplement w natural approach like ginger and turmeric to help me not get clots? Or quit cold turkey. Or stay on it but risk damage to kidney and liver w prolonged use of the thinner.
The guidance would be appreciated.
Thanks,
M
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We can't offer anything that counters what your physician has suggested for you. What worries me is that you are not feeling so well lately. This may very well be something new that needs to be investigated. I don't see how it can be related to Eliquis since you have been on it apparently uneventfully for years now. Instead, you may have a new condition that needs attention. I say this because you claim to have been living well, even exercising, with no ill effects until recently.
If I were you, I would continue with the apixaban, get checked out, and if it turns out that whatever it is is unrelated to the conditions for which you were placed on Eliquis originally, and maybe get confirmation that you can safely go off it, then do so.
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3 ReactionsNo medical advice from me other than to say that I have been on a blood thinner for over 20 years without any obvious damage to kidney or liver - take because I have a metal mitral valve.
@maddie37factor5 Welcome to Mayo Clinic Connect! Our bodies often "get used to" having a medication onboard, and after a while it can be a challenge to stop it. Did your medical team offer you a solid reason for stopping the Eliquis, and suggest how to do it? Perhaps titrating off of it versus cold turkey?
You mention that you don't seem to feel well right now. Has that been explored? Change in environment, diet, work situation, home surroundings? It seems you are very aware of things going on with your body, and it certainly bears sense for you investigate why you are not feeling well.
Ginger
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1 ReactionI think the key factor in this statement is that lately you have not been feeling well. Can you better define that and definitely seek medical attention if your gut feeliing that your body is telling your something....cause it usually is.
I have an ASD with a catheter closure using an amplatzer septal occluder. Why haven’t they closed your hole?! Especially so young. I would think an adult congenital heart defect cardiologist/interventionist would have jumped on closing it especially in light of the strokes. Of course I don’t know your whole health history but I sure hope you’ve had a second opinion by a specialist. All the best from one heart patient to another.
Get a second opinion before stopping Elloquis… and go to cardiologist or two regarding heart issue. Not feeling well is what I felt - general malaise… then fainted, then found PE’s everywhere in both lungs and saddle in between. I was walking around with that… lucky I went to ER. You can still get clots on blood thinners- rare but happens. Follow your instincts and get more advice from docs.
I can use some advice also. 45 year old daughter doctored years because of a feeling similar to anxiety attacks. The only thing they found was elevated Ddimer. Two strokes later with no known cause finds out factor v Leiden. Drs. Don’t think there is a connection with the strokes! Low dose aspirin daily for about one year now. Don’t
Know where to go for more info.
Hi @donnacsec At 45, your daughter is so young to be experiencing strokes. I’m sure this is elevating anxiety levels for the both of you!
From my understanding, an elevated D-dimer can be an indication of blood clotting condition, but not a confirmation of one. So usually there are follow-up tests to find the underlying cause.
Factor V Leiden is a mutation of one of the clotting factors in the blood. This mutation can increase the chance of developing abnormal blood clots, which your daughter has already experienced. Medications to prevent clotting are recommended such as low dose aspirin.
I know you’d like to learn as much as possible about your daughter’s condition. To get you started I’m posting some links below with lots of informational material.
~From Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/factor-v-leiden/symptoms-causes/syc-20372423
~From Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/17896-factor-v-leiden
~From Bloodclot.org:
https://bloodclot.org/factor-v-leiden/
There are some great discussions in Connect with other members who have Factor V Leiden. Here are links to a few of those conversations.
~Factor V Leiden-Deficiency blood clotting condition:
https://connect.mayoclinic.org/discussion/factor-v-leiden-deficiency-blood-clotting-condition/
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~Anyone with Factor V Leiden?
https://connect.mayoclinic.org/discussion/anyone-with-factor-v-leiden-mutation-mthfr-blood-disorder/
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~Anybody else have Factor V Leiden?
https://connect.mayoclinic.org/discussion/anybody-else-have-factor-2-and-factor-v-leiden/
Since this is an inherited condition do you recall anyone else in your family or husband’s family having blood clotting issues?