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sherohio
@sherohio

Posts: 3
Joined: Mar 28, 2018

Newly diagnosed with coagulant factors

Posted by @sherohio, Fri, Apr 20 12:48pm

I am a 63 yr old female, active and in otherwise excellent health, who ended up recently being admitted to the hospital with ischemic colitis. A CT scan revealed a blood clot in the portal vein of my liver. Further testing revealed both Factor V Leiden and Lupus Anticoagulant clotting anomalies. I am now faced with lifelong daily Warfarin treatment. My hematologist has removed my daily Meloxicam (anti-inflammatory), taken for sciatica and spinal stenosis, as well as all over-the-counter NSAIDs. I have read that some patients on Warfarin have successfully combined it with Celebrex, and I am wondering if anyone on this discussion may have info. My hematologist is skeptical, but my back and loss of ability to engage in mild sports activities (golf, cycling) makes me want to find a solution.

REPLY

Hello @sherohio, I recently sat down with a physician at Mayo Clinic to discuss bleeding disorders in women and we talked about Factor V Leiden. You can read there here, https://connect.mayoclinic.org/newsfeed-post/clotting-disorders-factor-v-leiden-and-blood-clots/. There is an interesting part from our talk where Dr. Marshall says, “We do not actively treat clotting disorders, unless they have had a blood clot. What we do want to do, is council our patients about how to mitigate the other risk factors like smoking, weight management and living healthy lifestyles.”

Your situation is not necessarily a generic situation though as you mentioned you have other conditions like lupus as well. @sherohio, did your medical provider tell you that you had to be on daily blood thinner medication permanently or until your blood clot is resolved?

Interestingly enough, I was born with a rare genetic bleeding disorder as well, but the exact opposite of yourself. I was born with Hemophilia, which means my blood does not clot on its own and I am susceptible to excessive internal and external bleeding without regular treatments.

@JustinMcClanahan

Hello @sherohio, I recently sat down with a physician at Mayo Clinic to discuss bleeding disorders in women and we talked about Factor V Leiden. You can read there here, https://connect.mayoclinic.org/newsfeed-post/clotting-disorders-factor-v-leiden-and-blood-clots/. There is an interesting part from our talk where Dr. Marshall says, “We do not actively treat clotting disorders, unless they have had a blood clot. What we do want to do, is council our patients about how to mitigate the other risk factors like smoking, weight management and living healthy lifestyles.”

Your situation is not necessarily a generic situation though as you mentioned you have other conditions like lupus as well. @sherohio, did your medical provider tell you that you had to be on daily blood thinner medication permanently or until your blood clot is resolved?

Interestingly enough, I was born with a rare genetic bleeding disorder as well, but the exact opposite of yourself. I was born with Hemophilia, which means my blood does not clot on its own and I am susceptible to excessive internal and external bleeding without regular treatments.

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Thanks for your response. As I understand it, the lupus anti-coagulant factor is not the same as having lupus. It is an “acquired” factor, as opposed to Factor V Leiden which is inherited. In my case, it may have come from long term use of birth control pills. The other causes, as far as I know, do not apply to me.
I do have the portal vein (liver) blood clot and I have been told I will be on life long Warfarin as a result. There is no follow up scan scheduled by my hematologist because he said the Warfarin is required in cases like mine, and since the clot is contained in the liver, it’s presence is not the concern but rather my tendency to clot elsewhere and have it move to my lungs or brain.
I have finally resolved that this life long Warfarin is going to be me from now on, but my current problem is the issue of combining it with Celebrex to relieve the inflammation from my sciatica. If anyone has info about this I would be most grateful.

@JustinMcClanahan

Hello @sherohio, I recently sat down with a physician at Mayo Clinic to discuss bleeding disorders in women and we talked about Factor V Leiden. You can read there here, https://connect.mayoclinic.org/newsfeed-post/clotting-disorders-factor-v-leiden-and-blood-clots/. There is an interesting part from our talk where Dr. Marshall says, “We do not actively treat clotting disorders, unless they have had a blood clot. What we do want to do, is council our patients about how to mitigate the other risk factors like smoking, weight management and living healthy lifestyles.”

Your situation is not necessarily a generic situation though as you mentioned you have other conditions like lupus as well. @sherohio, did your medical provider tell you that you had to be on daily blood thinner medication permanently or until your blood clot is resolved?

Interestingly enough, I was born with a rare genetic bleeding disorder as well, but the exact opposite of yourself. I was born with Hemophilia, which means my blood does not clot on its own and I am susceptible to excessive internal and external bleeding without regular treatments.

Jump to this post

Thank you for educating me further on the lupus anti-coagulant and sharing more about yourself. While I am not a medical professional, I was able to find the following information from Mayo Clinic, https://www.mayoclinic.org/drugs-supplements/warfarin-oral-route/before-using/drg-20070945:

"Using this medicine (warfarin) with any of the following medicines is usually not recommended, but may be required in some cases. If both medicines are prescribed together, your doctor may change the dose or how often you use one or both of the medicines." Celebrex (Celecoxib) is listed on the list. It sounds like it is not recommended, but there are ways to manage your dosing if both are necessary. Have you had a chance to ask about working with your physician to find a level that is safe to use both?

No, he told me he was opposed to it, but at the time my pain would come and go, so, although I was disappointed, it didn’t seem to be super important. Now, however, the pain has ramped up and I fear I may need a more long term solution to my back pain. It has completely altered my activities and my ability to exercise. Based on your information I think I will make another appointment and go back to see him to discuss this information.

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