Warfarin Sodium and factor v leiden

I was diagnosed with Factor V Leiden after suffering from bilateral PEs in February 2004. I am on Warfarin for the rest of my life (I turn 45 in November). Since starting the Warfarin I have gained about 70 pounds. Nothing I do seem to work. I have tried eating better. I would love to exercise but my knees are shot. Probably from lugging around all this extra weight.

Has anybody else had this problem? From what I have read online, doctor will say the drug doesn't cause weight gain but come on.

Can anything be done short of stopping the medication? I am too afraid to do that. It sucks that there is not an alternative rx that would work.

I suffer from depression too (have for almost 15 years). As my weight has climbed, my meds for depression don't work as well. I am at the end of my rope & slowing losing my grip.

I was diagnosed with Factor V Leiden after experiencing bilateral PE's in February 2004. Since then, I have gained A LOT of weight. Not that I needed to but dang. I am at my highest ever & nothing I do will make it go down. I am almost 80 pounds heavier than I was in 2004. Something is not right. I suffer from depression (have for more than 15 years). My medication doesn't seem to have the same effect. My joints are killing me so it's hard to exercise.

A side note, shortly after being hospitalized for the PE's for a week, I noticed my hair thinning. Doctor told me it was because of the "shock" to my system due to having the PE's.

I will have to be on Warfarin for the rest of my life. I turn 45 in November. Ugh.

Has anybody had the same problem with weight gain? Is there anything to do about it? I feel I am at the end of my rope & slowing losing my grip.

I'm 39 and have been on Coumadin for about a month. Was diagnosed with DVT in right calf after taking Yaz birth control for only about 4-5 months (no other pre-conditions - I'm a non-smoker, fairly active, not overweight, no recent airplane trips or long car rides.) I was on Yaz to treat severe problems with my period which has been the case since I was a teenager, but I was tired of having to call in sick to work every month, and had hoped Yaz would eliminate that problem. I had been on other BCPs when I was in my 20's, and never had any symptoms of clotting, so didn't think that it would be all that risky to try again, despite me being slightly older than the typical woman on BCP. Obviously, I am not taking Yaz anymore, and will not be able to take any other hormonal therapies for the rest of my life. But I guess that's minor compared to the risk of developing PE from an undiagnosed blood clot.

Anyway, I've been noticing I've been getting sudden, severe headaches since starting the Coumadin. I have a history of migraines but I usually only get one or two per year at most. Now I've had what feels a lot like a migraine twice in a matter of a couple weeks. My husband has also commented that I've been irritable and acting "spacy".

My INR has also been all over the place. They've been alternating me between 5 mg and 7.5 mg per day. For the first few weeks I was right where they wanted me - between 2 and 3, but then last Friday my results were 4.6!! Way too high. I go back this afternoon to see if anything's changed over the weekend, after skipping a dose and then doing 5 mg Sat. and Sun. I do hope they can find the right balance and don't have to keep tinkering with the dosage. I'm wondering if that's what's contributing to the headaches. Maybe if they can stabilize how much I'm taking from day to day, my body will adjust.

I wonder if anyone "official" is tracking the number of DVT/PE patients that can trace their onset of symptoms to Yaz. My sense is that this is a much more serious and prevalent side effect than their marketing dept. would like to admit.....

Information For The Recently Diagnosed
Possible Side Effects of Coumadin®

I found the following on a website dedicated to Factor V Leiden patients who need the warfarin/coumadin due to the genetic issues:
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Here are some of the side effects reported by members of our mailing list who are on Coumadin®:

Hair thinning-hair loss
fatigue or being tired more often
taking longer to recover from cuts or bruises
sun burn or sensitivity to light
depression.
You may experience some of these effects or none of them.

Also reported: Uneven INR's with generic coumadin®. I refuse to take generic coumadin® (warfarin). My INR will not stay stable on it. But some folks like it. It's a personal choice.

Possible side effects of LMWH:

Bleeding is the main adverse effect, either major (internal) or minor (injection site bruises, easy bruising, etc).
osteoporosis may be an issue with long-term use
very rarely an allergy develops, called HIT (heparin-induced thrombocytopenia)
liver tests (enzyme levels) may become temporarily elevated, but usually return to normal and rarely lead to the need to stop LMWH
last but not least: empty wallet syndrome (very expensive drugs)

link

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I have been on Warfarin since Sept 2004 when I had multiple blood clots in both lungs. Since then I have had two more PE's (one with a therapeutic INR) and a blood clot in my left arm (INR was also therapeutic). Genetic tests show nothing.

Since starting Warfarin I have had
- dizziness issues,
- eternal extreme fatigue
- hair loss
- short term memory and cognitive issues,
- joint pain and
- head aches all the time. I think the headaches are the worse since I can't take any NSAID's for them.

I have lost weight and push myself to exercise because it is supposed to make you feel better, right? Well not yet. I keep waiting.

I have not been able to return to work and worry about the long term implications of this.

Many times I have wondered about my sanity and if I was imagining all of this, so finding this forum at least lets me know that there is a possibility that it is not all in my mind.

I have been seeing a psychiatrist to help me work through the almost dying 3 times thing, but it is hard to accept since no one knows why I throw the clots. My INR is not stable in spite of close monitoring of Vit K and other drugs, and my INR must be taken twice a week.

developed a dvt after a flight in june. very fit person running several miles a day. now in oct my dvt has not gone away and im developing more clots despite being on 7.5mg of warfarin a day. i have been told that i have to take it indefinately. no side effects to start with but did have blurring of vision recently that was investigated but nothing found. now my leg is itchy and im developing blood blisters on my hand for no reason. more worried about these blisters than anything. has anyone had anything like this?

I have factor V leiden and suffered a mild stroke 3 years ago at 41. I took warfarin for 1 year. I felt terrible the whole time, I developed asthma for the first time while on it, i was weak,tired ,had numbness and tingling in my lower legs and feet,and felt foggy.
The bad thing is that I've been off of it for three years now and definately feel better but still not like I was before. I'm convinced that the warfarin is the culprit and that I may never fully recover.

I have been diagnosed as a homozygous Factor V Leiden mutation and will have to be on warfarin for the rest of my life. I feel really dragged out and tired and need a couple hours of sleep midday. Sometimes though I wake up at 4 am and am wide awake. It is not dependent on my nap. In general, since going on warfarin I feel generally weak and tired. I sunburn more easily and it takes longer to heal. They do not say these are side effects but it sure seems odd that it has happened since warfarin 8 months ago.