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I am a 40 year old female. I found out 3 years ago that I have fa...

Posted at 9:33 PM on Aug 23, 2009 by traby21169, #43950
I am a 40 year old female. I found out 3 years ago that I have factor V. I've been hospitalized for 17 PE's. I was being treated with coumadin, plavix, lovenox. My INR will not stabilize. The doctor has now put me on 30mg. of warfarin a day. and my INR still sets at 1.2. My side effects are awful. I feel tired, week, cold, weight gain, but most of all the terrible headaches. The doctor says it has nothing to do with the warfarin. I stay depressed and now losing hair. I've taken my doctors advice and I'm going back to the cancer center where they are more experienced. I feel like I'm dying everyday and its not in my head. I do believe its side effects. And if its not moving my INR than to me it seems useless to take such a high dosage. Its a catch 22.
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Reply 3 months ago on Aug 23, 2009 by 777, #22459

Unfortunately, most drs. push too many drugs., since that's all they know. I suggest that you change drs. or , find a natural doctor.

BEST WISHES.

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Reply 2 months ago on Aug 27, 2009 by bullette, #22549

Sorry to hear about the Factor V. Your post interests me because you can't get your INR to stabilize. This is a long-shot but it might help. Have you ever been checked for Celiac disease? It is a reaction to gluten and it affects your small intestine and that affects how your gut absorbs not only nutrients, but drugs. I have it, and it took three months for them to find the right dosage for me. I follow a very strict diet (and have for two years) and it still took three months. They can check you with a blood test, called a Celiac Panel, if you are interested. Also, you can research Celiac Disease on the web and see if you have any symptoms. It's just a hunch, but it could explain why your body is reacting the way it is.

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Reply about 1 month ago on Oct 21, 2009 by shadotme, #23736

I was diagnosed in May 2009 with multiple, massive PE's. I know exactly what you're feeling. I was initially put on Coumadin/Warfarin and went into anaphylactic shock from a reaction to the drug. For 8 days I was in the hospital while my doctors could not believe that I was actually allergic. Then I was put on lovenox 2x day 100mg. It's been rough. Lots of injection site bruising, and now the hair loss is becoming really bad. I have been reading, and most all sites do say that the hair loss does reverse itself within about a month after stopping the lovenox. I hope it's true. Quite honestly, the dr says if I get pregnant I'll remain on the lovenox, and I'm no longer sure which I want! I do get depressed from time to time, usually after an appt with the doctor. I may not be offering any advice, but I can totally sympathize with your feelings. I do sometimes think others look at me like I'm crazy!

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Reply 14 days ago on Nov 07, 2009 by murphygirl35, #24296

I too am on warfarin for factor V and I feel like a 90 year old with severe arthritis and my doctor says it is a side effect.
As is the hair loss. I am not a doctor but my doctor suggested I talk to a hemotologist as they know more than he does about alternatives. Avoid vitamin K at all costs.

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Reply 14 days ago on Nov 07, 2009 by murphygirl35, #24297

I also just read an article about how people with Celiac Disease are more likely to have deep vein thrombosis. Which is what I have. both of those things. Get yourself checked for Celiac. It might help.

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