Factor v leiden symptoms and conditions

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 have been on Yasmin for two and a half months now. It was prescribed to me by my doctor as a means of treating 2 cyst that developed because of my endometriosis as a means of avoiding surgery. He put me on it for 3 months but because I forgot to start the second pack for 2 weeks I had to start the 3 month period all over. The first month I took Yasmin the side effects were minimal but since I started taking it in May I have gotten a constant vaginal itch and pain, my eye sight is blurry, stomach feels sick and I get stomach pains, neck pains, shoulder pains, leg pains and hip pains, pains in my face, little or no lubrication during intercourse, constantly have to urinate, stomach feels like its tightening and has gotten really big, gets short of breathe easily, bad headaches, I feel as though I would pass out any minute when I am standing or walking, I am disinterested in everything, I get nausea, I have lost all interest in sex, I feel bloated all the time, I have lost all taste in my mouth, feels very tired and fatigued all the time, I feel very sad for no reason. I keep feeling sick all the time and have lost interest in food. When I am sitting I feel the pains in my legs and hip even more. I am falling into a state of depression and it is beginning to show at work. I am also gaining a lot of weight, rapidly, and really don't know what to do about it because I am very careful with the things I eat, how they are cooked and the time I eat also and I do exercise. I really don't know if I should continue until I finish the 3 months to see if it works for me or if I should stop taking the Yasmin and ask my doctor to try something else. I just don't feel altogether right now.

For all of you that has had problems with Yasmin or Yaz, I'm sincerely sorry. I'm really curious though to all of you, has anyone that read the leaflet that comes with the birth control box, have any problems? If you read that it may increase potassium which may cause serious heart and health problems so it would be good to get your potassium level checked before taking it. Side effects usually go away after 2-3months, has anyone have problems longer than that and ended up finding out what was the problem? I just wanted to know because my girlfriend is about to take it...and I wanted to know if one knew about the effects of this pill, and what precautions they had taken. Okay, thank you.

I am a 25 year old with Factor V Leiden and was told by doctors that the Mirena would be the best birth control for me since I can't take BC pills anymore. I had the Mirena inserted Nov. 2008 and am having it removed next week. I have had a horrible experience with it. My obgyn told me that the chance of experiencing any side effects was rare since the hormone stays in your uterus. The insertion was extremely painful which I expected since I have never had a child. In the past 4 months I have gained 15 pounds despite regular exercising and eating a low calorie diet, I have a constant stinky discharge, acne across my chin and sides of my face, my hair is falling out, I have no energy and am incredibly tired all the time, have been experiencing nightmares, and have sharp cramps that make me double over in pain. I am a newlywed and have never had any psychological issues. Now I am in therapy for anxiety and depression and after reading all the posts, I now am convinced that this is also a side effect of the mirena. I used to have a healthy sex life and now I have no desire to have sex or be touched by my husband with is causing tension in our new marriage. I was trying to stick out the side effects to see if they would go away since I paid so much money ($600) for the mirena. When I spoke with my obgyn about my side effects she said they were not caused by the mirena because the hormone is directly in your uterus. I am so frustrated! I feel like I have been lied to by my doctor. I am hoping that after removal of the mirena I will feel like my old self again!

I posted a story on January 16 about my 16 year old daughter who turned out to have Factor V Leiden. She went on Yaz and nearly died a few weeks later. Factor V Leiden really is very common. Especially if you have Scandinavian blood or red hair. But it affects all races and ethnicities at lower levels. If you want to read more, the New York Times had a good article on February 24, 2008. It was about the decision whether to get a genetic test before going on birth control. B. A.

My daughter was 16 when her GYN started her on Yaz. She was 5 ft 3 and 100 lbs. Non smoker. No risks. She went on the pill because she was having heart palpitations and extreme fatigue that correlated with her menstrual cycle. The idea was to level her hormones and see if that would level off the physical problems. Within 6 weeks she suffered from a pulmonary embolism. Because she was young, everybody though it was just pneumonia or inflammation of the lining of the lungs (pleurisy). Then her leg swelled up and turned blue from a clot (DVT). I found it fascinating that everybody at the first hospital, during the helicopter ride and at the second hospital all had EXACTLY the same reaction . . . They all said, "you just started taking the pill, didn't you? Probably one of the new ones like Yaz." Apparently, these new 'third generation' pills are worse than the old ones when it comes to clots. It turns out that my hubby's history of blood clots should have been a clue that my daughter has a common clotting disorder and YAZ triggered it into action. The clotting disorder affects up to 10% of Swedes and that is where my hubby's family comes from. Up to 5% of all Caucasians in the United States have Factor V Leiden as well. I notified the FDA and highly encourage everybody else to do so as well. The doctor are not required to file a report unless a patient dies. My daughter is doing better now. If any reporters are reading this, please contact me. B. A. ***** If you have ANY family history of problems that might be due to clots, avoid the third generation pills.

I stumbled on this site while doing research on DVT's. I am a nurse and was on YAZ continuously (skipping the inactive pills and going straight to a new pack) to control my migraines for about a year. I developed 3 DVT's in my left calf and behind my left knee. I have been having charlie horse cramps as well. I am now on lovenox injections 2 times a day and 7.5 mg. of coumadin to deal with the clots.I have also had the issues with heart palpitations, chest tightness, and feeling like i can't catch my breath. I read in one of the posts where it was described as she "had to think to catch her breath". I totally agree! I thought this drug was great, until now. I stopped it last wed 1/7/09 when they found the clots in my calf/knee. Can anyone with experience tell me how long it took them to recover from the palpitations and breathing issues. I am a very health person, non smoker, with no prior or family history of any clotting issues. Thanks for all the info on here and God Bless everyone who has suffered!

I've been on Yasmin/Ocella for 2 years, and the other week I had two panic attacks, like my body suddenly felt achey, trembly, as if I couldn't breathe, my throat and chest were constricting. After a long time, both passed, but since then I constantly have felt a tightness under my jaw, lump in my throat, and chest tightness on and off. My doctor told me I was just experiencing anxiety but now I think it may be Yasmin, even though I never had problems until now. Sometimes the skin on my throat feels itchy/tingly in a subtle way. If anyone has had these experiences with the throat & chest on Yasmin, I'd like to know because I'm hoping the problem is this.

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.....

I am a 26 yr old newly married woman and have been using Yasmin for 7 months.

I've experienced really sharp breast pain and sore calves occasionally whilst on the pill, but also have seen benefits of using this contraceptive - lighter, more regular periods, clearer skin and less greasy hair (these use to be big problems for me). I haven't had any severe mood swings either, as some have mentioned of having.

I think with all contraceptives there will be good and bad side effects - just depends which brands you can cope better with.

Just wondering if Yasmin can cause infertility if you take it for too long??

I am 20 and have been on Yasmin a year and a half now and to be honest I am still not 100% completely convinced that Yasmin is the root of all my evils. To all of you who are having horrible side effects after a few days, give it time. Your body is trying to adjust to all the hormones you are putting into it and it’s doing its best to get back to normal. My first month was semi-bad, some nausea here and there and a little tenderness, but not enough to stop my life over. My doctor recommended taking the pill right before I went to bed so I could hopefully sleep though the nausea, which I usually did. After the first month I was perfectly fine and back to my normal life. I then switched to taking my pill in the morning so it was easier for me to remember. After reading countless “horror stories” on this website even I started saying, “oh my gosh, I have that….i have that too….and that!...its all because of that horrible Yasmin!” But then I had to take a step back and realize Yasmin is not to blame. Sure, I have panic attacks sometimes, but I have had those way before I started taking birth control and sure I get depressed sometimes, but what woman hasn’t at least once in their life? I didn’t lose or gain weight, my acne perhaps got a little better, and my breasts didn’t change an inch. My only questioning factor is that I don’t really have that big of a sex drive, but then I realized I never have. Now, before you all start yelling at me, I am not calling you liars in the least, I believe you and I feel sorry for all of you who have experienced bad things because of this or other birth control pills. For those of you who are thinking of taking Yasmin and are scared after reading all of these articles, remember, every body reacts to pills and medication differently. Thousands of people die every year from taking Tylenol and aspirin, but does that mean we should take these medicines completely off the shelves? Of course not. All I am saying is for every one Yasmin horror story there are thousands of very satisfied customers. Give it a try, you only have three months of your life to lose and so much to gain.

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.