Warfarin Sodium and coumadin

I was diagnosed 16 years ago with portal vein thrombosis which is a blood clot deep in the liver. Taking Coumadin or warfarin is not an option for me it is a necessity to live. I experienced headaches and depression early on which I did not connect to the drug because of the trauma I had been through. The symptoms have come on over the years and seem to be worsening. I am experiencing severe joint and muscle pain, cramps in my legs and hands, extreme weight gain, severe water retention ( I take 3 kinds of water pills a day), extreme fatigue, insomnia, heart valve problems, memory loss and have recently found out I have developed severe osteoporosis in the last 10 months. I have recently undergone tests for auto immune disease, lupus and rheumatoid arthritis which all came back negative. I am 42 and feel like I'm 72. I keep asking the doctors if these symptoms are related to the long term use of the drug and they say it is unlikely. I currently take pain killers to manage the pain so that I can function daily. I take 5 mg and 7 1/2 mg alternately and keep my INR around 3.0 to 3.2 and am very stable. After reading these postings I am even more convinced it is the drug. Is there anyone out there that has been these drugs as long as I have and if so, what are your side effects?

Been on coumadin for a year, horrible medication. Have aches all over, legs, shoulders, back, always tired, want to be off this med. Was taking alternative meds previously...nattokinase, bilberry which are blood thinners but are also SAFE. Then I had no leg pain, no muscle pain. I now take vitamin e and fish oil with the coumadin, no interaction since I've been using them for a long time and are more beneficial than the coumadin as far as I'm concerned. What I need is a naturopathic doctor, but they are hard to find, regular mds have no clue about supplements..all they want to do is increase your prescriptions. Doctors try to scare people telling them they'll have a stroke without coumadin, but have no solution on how to prevent stroke, etc. without drugs.

32 year old male. Admitted to ER with A-Fib. Treated with lovenox and atenolol. Cardioverted 3 days later. The headaches began as soon as I started the coumadin and have persisted everyday since. Worked with doctor to find cause of headaches, tried switching blockers, no avail. The only other med I'm on is warfarin. What else could it be? I love how a quick search shows "coumadin, no known side effects", but here's a room full of people with the same headaches. Now I see, headaches are just the beginning. What kills me, is instead of finding out why I went into A-Fib, and working to fix the real problem, the doctor's would rather thin my blood, so I don't have a stroke when my A-Fib comes back! I refuse to poison myself to death, just to avoid death by stroke. Come get me, I'm done with this qwuap!

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.

Hi I posted this on the Coumadin site when I should have been here,

I am a 66 year old female and up to a year ago I felt 20 years younger now I feel 20 years older.

I fell and broke my hip June '08. Had a hip replacement and developed a blood clot (DVT) in my left leg.

They put me on Coumadin and when that didn’t do the job they added Lovanox (another blood thinner requiring shots in the stomach).

Not only has they not helped but my blood clot is growing.

My symptoms:
daily headaches, debilitating leg pain (the pain is so bad that it is crippling me), fatigue (an overwhelming feeling of tiredness, I set down for a few minutes and wake up hours later.), loss my concentration (trouble doing simple crosswords), can’t study simple directions, numbness in toes and hands. I can go on.

And the doctors? “It’s all in my head. It can’t be the blood thinners.”

I am going to copy your blogs and take them to my doctor and demand something be done.

Thanks again to this site and all of you. I was beginning to think there was something wrong with my mind.

Hi, I wanted to update my experience with Warfarin, I changed to Coumadin and have had much less severe side effects.

I too am on warfarin for life. I was diagnoised with lupus anti coagulant after they found a clot in my right leg. I was having no symptoms in my leg ,went to the er for hurting in my chest and left arm. was started on lovenox shots 2 times a day and coumadin. I too am experiencing joint and muscle aches and dizziness and feel extremely tired all the time. But I thank God every day they found my clot before it moved. And that they found the clotting disorder. I hope you all get better soon .. God bless you all. P.S. This medicine scares me very much, But so does the alternative!!!!!

After reading these posts I am more confused than before, because my experience is so far very different. I was diagnosed with DVT about two weeks ago and now take Coumadin daily; the Lovenox injections have been discontinued. The reason I'm so confused is I now feel the best I have in 5 (five) years.

Before being placed on the anti-coagulants I had memory and concentration issues that were progressively getting worse and greatly affecting my job, and had daily headaches. I had joint pain that made it difficult to get up after sitting for awhile; they felt constantly inflamed. I felt fatigued all the time and my muscles hurt like I had really pushed them; I just didn't have any strength, and had muscle cramps. I was constantly yawning and found my jaws hurt from clinching my teeth, subconsciously trying not to yawn. I was extremely sensitive to physical touch, even hugs hurt. I also felt extremely depressed and cried almost daily. My lips and left cheek tingled, as well as other parts of my body. Plus I would get the feeling of sudden pressure in my head (different from a headache) like it was going to pop off, and I my eyes didn't seem to track what I looking at and had difficulty in remembering or comprehending what I just read.

About 6 (six) days after starting treatment it completely changed and these symptoms are essentially gone. I have talked with my doctor and pharmacist and they are baffled. I am concerned this change, while welcomed, may indicate an underlying condition that is not yet diagnosed. Has anyone ever heard of such an impact from starting Coumadin treatment?

I have been on Warfarin since October 20th of 07 after being bedridden for 3 weeks in excruciating pain in my hip/butt which kept me from moving & i'd drag my left side of body from my waist down, into our bathroom in excruciating pain unable to turn to flush a toilet or stand for more then a minute. I begged my primary doctor to "give me an mri as my back was in so much pain with the hip/butt". I had been getting epidurals for what doctor assumed was a herniated disk.i was in a wheelchair now & my husband took me several times to E.R. AND THEY SAID "WHY ARE YOU CRYING IT'S ONLY BACK PAIN." I labored more & more just to breath. I couldn't get my breaths. "Frightening" finally Then, I walked myself into the local E.R. and told them "I think I have a clot in my lung because I don't have a cold or a bronchitis & I've been in bed so much I believe it is a clot." It was two clots in my right lung. My lung hurt a little more each day I recall I went about two weeks gradually having more & more difficulty getting my breaths. I was hospitalized and then my primary wanted NOTHING to do with my care when E.R. doctors called him.local hospt. took care of me & the clots resolved. I am still on warfarin for coumadin. I really do have a memory problem I fear now, "short term", especially now after 2 yrs on this med. Also, Last time I went in the sun I was so wiped out exhausted like it beat me up. I am afraid to go back to the beach. I get headachs also and one time when my INR. went up over 3, my ankles got these little red spots and also on my chins of both legs like blood specks showing thru the surface.Still there but not as evident. My avg. INR is 2.4 I feel most comfortable at.I try to maintain. Back in 1998, I got two clots in my left leg after a botched knee surgery to repair a torn cartledge and awoke with an in place fractured knee cap.. two weeks later horrible pain in my left leg revealed two clots one at ankle to groin in my vein=d.v.t. and the other at the side of my knee in artery to groin when the tornaquat was.

I am a 53 yr. old woman who had aortic Valve replacement surgery in April 2007. I had a St. Jude valve put in and have been on Warfarin ever since. I usually go for a couple months with a steady INR and then, for no apparent reason, it goes out of whack and I have to adjust the level (with repeated doctor visits) to smooth things out. I have gained 20 lbs since my surgery, and cannot lose it, no matter what I do! I ride an exercise bike an hour a day, or walk a 3 mile route. NOTHING helps. I have recently said that if I had it to do all over again, I would choose a Bovine valve (even with the knowledge that surgery would probably have to be repeated later in life) just to be able to avoid the side effects of Warfarin. I have also experienced light-headedness, left sided chest pain, fatigue, coarse thinning hair, but by far, the worst is the weight gain!!

Hi, I am a 47 year old woman and started Warfarin and Lovenox June 29th as a result of blood clots in my left leg from knee surgery. I was able to go off the Lovenox July 4th (Yay!) because my INR levels were above 2. I thought the Lovenox was the cause of the nausea I experienced, but apparently that is not the case. I keep telling the clinicians at the Anticoagulant Clinic about the nausea and their response is that they haven't heard of it as a side effect. Thank you all for posting to this website, there is some comfort in learning you are not alone with these strange side effects. I also experience dizziness and have difficulty finding words. I think I will switch from Warfarin to Coumadin to see if the side effects are less, though many of you have written about weight gain ~ yikes. For those of you bruising with Lovenox I was told if the needle is dry when it goes in there is much less bruising. And to everyone my thoughts and prayers are with you. Oh yeah, I also have nerve pain in the bottom of my left foot, the compression hose do help website is ******

I am a 46 yr old woman. After developing 3 DVT's in my lower rt calf after major foot surgery, I was prescribed Coumadin/Warfarin. My doses have fluctuated between 1mg to 7.5mg (I have just lowered my dose from 6mg to 5mg as my INR yesterday was 3.9). I have noticed a lot of the symptoms listed above (others comments), but have bumbled along. The symptom that is bothering is my mouth! I can hardly eat or talk - my lower jaw especially aches constantly and even despite using an extra soft toddlers toothbrush, my gums bleed profusely. I only read of one other persons symptom regarding teeth/gums/mouth. I know it sounds melodramatic, but my mouth aches as though I had mouth cancer!!! I can't wait to get off this rat poison! Good luck to all.

My husband was taking coumadin and developed an infection in his leg. He was ordered Bactrim DS bid. By the third day of the Bactrim, his INR was 4.7 and he was having mental status changes and vomiting. A head CT Scan showed he was bleeding in his brain from the interaction of the coumadin and Bactrim. He had to have 2 bilateral crainiotomies to flush out the blood from his brain. He nearly died. He has severe headaches and short term memory loss.

Doctors really kind of hit and miss w/ all these agenda of telling patients that coumadin related symptoms are not at all what it seems..telling patients" it is all it your head"..what it seems and I know that doctors are 'tuned in" to tell patients "what they think they believe or read in textbooks and not listening to the real stories of these patients who are on these meds..they are therapeutic in a way to prevent blood clots in some conditions but in real situations those symptoms created by these meds are purely debilitating to some and having not to live life where discomfort won't hinder one from just living the normal life...free from all these adverse reactions,which are so crippling....I have made a decision to talk to my husband's cardiologist to have him stop taking this so called "rat poison" or surreal "human poison"...he was diagnosed w/ afib and had cardiac ablation..hubby's taking coumadin for about 8 months now-preventively...
but these symptoms had changed him into a very depressed individual..after reading all these tonight..I will take charge and will take control of our lives again and hopefully just live to be healthy again...thanx for all of you that posted these info.......

I started coumadin 2 weeks ago, for a clot in my leg. I'm dizzy and lightheaded. I guess I'll be on it for at least 3 months. I've had abdominal surgery and a wrist fracture repaired surgically in the last 6 months and have had breast cancer (surgery, chemo, radiation) 4 years ago. I'm on Arimidex now. All of this is to explain possible underlying causes which I am investigating.

Dizziness seems to occur within an hour of my taking it - in the morning, but subsides by the afternoon. I'm thinking of switching the time I take it to the night - before I go to bed - maybe I can be dizzy in my sleep then and wake up with some sense of normalcy. Any comments?

diagnosed w atrial fibrillation last jan 2009, prescribed coumadin,2.5 to start per day, now may 2009,leveled off to 10 mg 5days per wk,adn5mg 2days. also since feb prescribed rythmol, coreg & crestor. **but since late March have experienced weigh gain, mostly stomach weight & some upper body. also seemed tired earlier at night, have leg pains which the cardio dr.claims is from the crestor...but this weight gain is crazy.gained at least 5 lbs since mid to late march.

As a follow up to last pm message, I have found that taking the coumadin later in the day (i.e. 5 pm range) that the daily severe headache seems to come during the early a.m hours (4-5a.m).. and easier to manage/tolerate than interrupting my all day and evening activities. It does not alleviate them, but the timing is better?

The severe headaches EVERY day. that the doctor was sure were not related to the coumadin.. are debilitating. They are usually in the evening or during the night, as I take the medication later in the day. However, I do not know how I will be able to take this med the rest of my life. I am 66 and just spent time losing weight on weight watchers program.. only to see the scales climbing daily. I appreciate the insight on this site to let me know that I am not imagining all this and not alone.

I had a several small PEs in my right lung 2 weeks after cosmetic surgery. I just turned 37, run every day and in great shape. I was put on both lovenox shots for 5 days and Coumadin for 6 months. After 6 weeks the side effects with Coumadin were so severe (weight gain 14 pounds in 6 weeks, joint pain, tiredness, hair loss) that I took myself off cold turkey and started on NATTOKINASE. I am doing great! I would recommend searching the natural approach like Nattokinase, vitamin E, cayenne pepper, etc. I have stopped gaining the weight and it's starting to come off. All of my other side effects went away too. I've been off 4 weeks now. All of the doctors were mad and scared me when I went off of Coumadin. I had to do my own research and listen to my body.

Im 23 years old. One of the youngest people that is on coumadin I got sick when I was 22. I developed blood clots on my liver and stomach. Due to blood deficiency. I was told by the doctor it was inherited by one of my parents. My side affects are very fatigue, tired for no reason, skin blotches, slow memory, I get tired after 10 minutes of running like Im ready to collapse. Im always dizzy. =( I feel very fragile. I do get depressed sometimes because I feel like im very young at my age for this to happen. I found out I have to be on coumadin for the rest of my life. But we all move on....

E-mail me ******

Hopefully someone can share there idea's or another source of help.

I am a 43 year old female, I got a couple of clots in my left leg, caused by taking birth control. I was taking the bc to control my menstrual cycle, I took it against my better judgment, even though my dr. said it was not a high risk since I didn't smoke. Well that wasn't true.
The side effects are extreme dizziness, I went to walk down a set of stairs recently and almost fell down them, That would have been tragic, Thank god my friend grabbed my arm. I know for a fact that it is a side effect from the coumadin because prior to this dvt I had no dizziness, as a matter of fact I was very healthy, I exercised 4 times a week, boxing, weight lifting ect. I was "NORMAL" I can't wait until the doctor says ok, stop taking the blood thinner. I want my life back. I just want to get back to the way I was before my dvt.

This site has helped me feel like I'm not alone. Thank you to all of the previous people who have written in about Coumadin. I am not the normal DVT/pulmonary embolism survivor. I just turned 37, am a runner, organic/healthy eating Mom of three kids. I had a PE, two weeks to the day of my plastic surgery (breast augmentation and liposcuplture). I am currently on 7.5 mg of Coumadin daily and my INR levels have been pretty consistent. I just stepped on the scale tonight after feeling "fat" and was shocked to see I've gained 12 pounds in almost 6 weeks since starting Coumadin. Yikes! I am hungry all of the time. I've also had memory problems and my hair is more coarse. I hope I don't have to be on this for too long. They say 6 months for me. Good luck to every one.

Thank you so much for this site... I thought I was alone and loosing my mind. I started on Coumadin in Dec 2008... after 3 months I am falling apart... I can't seem to get anyone to listen... I am tired and cranky, gaining weight faster than I can keep up... I have dizzy spells and headaches, nose bleeds and just an overall feeling of not being me... like said above me... I miss me. The symptoms are so similar to being depressed its hard to pull yourself out... its hard to explain to other people how you are feeling because your doctor continues to tell you it is all in your head... I am a mess.

I had open heart surgery August 23rd 2006 for a conginital heart defeat (Aortic Valve replaced with mechanical St Jude valve). I wanted a bio valve but Drs insisted I should have the mechanical valve because of my age (45 at the time).

Prior to my heart surgery I was a performer, singer/songwriter/actress/comedianne and I loved what I did. It was my life. Now, after 2+ years post-op and on Warfarin (7.5 mg daily for life) I feel like life has ended and I'm just a walking dead person. The effects I feel daily are as follows...

Dizziness
Severe Headaches
Blurred vision
Memory Loss
Fatigue
Weight Gain
Trouble concentating
Fluttering effect in my head/ears- Hard to explain
Hair loss
Unexplained pains in chest & left side of my body
Unable to sleep well
Tiredness- even when I've done nothing to be tired for
Nausea
Gas & Diarrhea off and on
teeth pain- Like I've drank something very cold
feeling in my head similar to a brain freeze- like you ate ice cream too fast
Night bleeds in my month- wake up with a mouth full of blood daily
What do think, is that enough??

I'm going in tomorrow for a cat scan because the headaches have been so bad they feel I need to be checked for brain tumor and/or internal bleeding. When I tell the Drs I think this is due to Wafarin they pratically laugh in my face as if to say, "Silly silly woman, don't be foolish! We know whats best for you. Remember, we saved your life!" Really? Did you?!

I want nothing more than to get off this rat poison and regain my life, but to do so could mean a stroke or heart attack. I would go under the knife again to have the mechanical valve removed and replaced with a biological valve, but do you think my insurance company (Kieser) would pay for a "silly" thing like that? Right!

Welcome to the greatest country in the world!

I'm going to start a website to help people like us. I want your stories, please send me your info, together we might make a change, what can it hurt to try? Email me ******

B.

Cannot believe that tiredness/fatigue is not listed as a major side effect! My Doctor believes that it is my Warfarin/Coumadin and he has other similar patient experience.

I still have my sense of humor though! (just in case you wondered!)

My mother, 70 years old, been on Coumadin for 3 years (doctor said best to take since she suspected heart palpitations). Mother developed gradual memory loss, over the 3 year period, we didn't think anything wrong!! just a part of aging process!! Then one night she fell on the floor, stroke, we took her to hospital - done MRI and CTscan - result: severe brain bleeding. From that time - 4 months ago - she is now diagnosed with Dementia. I cant even describe how I feel about god damn Coumadin. Wish they never given it to her in the first place.

Hi, I am a 47 year old female and have been on Coumadin since Nov 1997 after developing several DVT's after surgery for a broken kneecap. Coumadin makes me feel like crap and the only time i have felt good in the last 11 years is when i have come off the medication for dental work or surgery. Some of my side effects are cold chills and cannot warm up, upset stomach, retaining fluid, heavy periods, added weight and my fat looks flabby even though i work out 4 times a week, lethargy, a very heavy neck on occasions and the list goes on and on. My coumadin has become very sensitive to what i put in my mouth. With "nutrients" added to so many foods i find i am now reading labels more than ever. The worst "nutrient" is Omega-3. This can cause bruising and bleeding without any help from Coumadin. Several deaths have been reported in the Australian media. I believe there is research being conducted in Norway using Kiwifruit as an alternative to Warfarin. I hope this is so and they are successful soon.

My dad was started on warfarin for DVT's and PE's after his surgery. He said every time he took a 5mg warfarin he felt dizzy and lightheaded, got very tired and got headaches. My sister said by law, GENERIC medicine only has to have 85% of the medicine in it and can be 15% filler. So we got him changed to name brand coumadin and he hasn't had any of those side effects since. May be worth a try.......

Ive been on Warfarin for 4 months after being diagnosed with a blood clot in my leg. Cause of clot is really unknown. I was on 13m and last week was told I no longer had to take it because my levels have been high. I stopped taking the warfarin and my side affects since starting it has been the following. Joint pain in my hip and arms, swelling and retaining fluid, sharp pains that jolt thru the leg randomly, experienced some nausea and dizziness the first few days after not taking the drug. since Ive stopped the warfarin 5 days ago it feels like the clot is returning in my leg. Is this possible?

I am a 49 year old male. I had my aortic valve and a part of my aorta replaced 5-1/2 weeks ago. The valve had a congenital defect and it was replaced with an artificial valve. I was able to do aerobic exercise and jog right up until my surgery.

The main problem that I have been experiencing has been numbness and pain in my arms and upper back. This has been present for the last 4 weeks. My right arm has been the worst. Most of my right arm is numb. Muscle strength has dropped in my right arm. Also for the last two weeks, part of my tricep muscle in my right arm does not "fire". I cannot move my arm in some directions. I was referred to a neurologist and he indicated that there is nerve damage. I will be having an EMG this coming week.

I am not taking a lot of medications. I take 100 mg/day of Metoprolo which I have been taking for the last two years. I am taking 5 mg of Coumadin, and I take some fish oil. I also took Amiodarone for ten days after surgery and then discontinued it.

Most of my muscle pain symptoms started 1-1/2 to 2 weeks after surgery (after starting Warfarin), and they have progressively gotten worse. Some symptoms can come and go. Symptoms include:
-Sharp pains in my arms, back, and legs
-Left and right arm aches, sharp pains in forearms when reaching
-Numbness in my right upper arm, left and right forearms, inside of my left leg, fingertips of the right hand, left thumb
-Loss of strength in my right arm. Tricep muscle does not fire (3-1/2 weeks after surgery)
-Skin is sensitive and feels uncomfortable on my arms, back, chest, and stomach

I realize that unexplained aches and pains are probably the norm after a major surgery. The numbness and pain in my arms seems to be out of the ordinary and chronic. The surgical doctors have not been able to offer any explanation, they referred me to the neurologist. Since the surgery went well, I feel that they are pretty much done with me. I feel that I am on my own.

I did try switching from Warfarin to Coumadin to see if that would make any difference. That was about 3 weeks ago and it did not seem to make any difference.

The surgical doctors do not think that the Coumadin could be causing my issues. I have read about rare, but serious Coumadin side effects that include muscle and joint pain, numbness. At this point, I am very concerned that I could lose more use of my right arm. I will be contacting my family doctor this week for advice also.

I suffered a DVT in 2006 followed by a venous cranial clot in March 2008. I have been on Coumadin since March. My experience has not been too bad, I have gained about seven pounds. The positive side effect is better erections. (Must be the thinner blood) I am a 52 yr old male.

I am not sure what to think now. I too have a Protein C deficiency and developed one clot per lung in Dec 2006. I lost about 20 lbs after leaving the hospital because I was under nourished and had messed up my metabolism over the years, so the consistence food intake and water was a good thing.

Now...I feel sluggish some times, and I feel like my mid-section is gaining weight. I have never been a small person, but I could always count on certain parts of me to look a certain way.

I have also noticed some elevated blood pressure...I was usually 110 over 60 now 120 over 70-75

Are you guys saying that exercise is futile?

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.....

Hello! After a 3 1/2 day stay in the hospital for atrial Fibb. which has since gone away and was likely cuased by extreme low blood potassium and sodium which has since been brought to all but normal levels.. I was taken off of Plavix a blood thinner which I had been taking since a heart attack in 2003, and put on the Warfarin, that was on June 22nd that I began taking Warfarin/Coumadin!. About 2 weeks ago I began having neck and shoulder pain, then slowly side and back pains deep down in the muscles. It is much worse in laying down position, have a hard time to sleep well, and if I trun or move while lying down the pain is very intense. I am going to assk the Dr. to take me off of the Warfarin and put me back on Plavix so I can see it it is the reason for the pains. I am quite sure it is! Please reply if you have the same symptoms as I do! Thanks, B.E.

Last week I had an issue with my INR - it has always been unstable, but this time was weird. My INR had been 6 and so I stopped the warfarin for 4 days, and went back on my regular 2 mg dose. Then we went on holiday to Washington DC for a week. 3 days in, my pee was the colour of cherry kool aid. Went to the local hospital (thank god for travel insurance). My INR was 7.89 - In the US this is considered critical and I was admitted, and treated with Vitamin K and 2 units of plasma. Within 8 hours my INR had dropped to 1.8 - now too low. The next day down to 1.25, and a week later I am still 1. I am taking fragmin now until I can get my INR theraputic again but Fragmin shots are even worse than warfarin.

An ultrasound showed now issues with my bladder or kidneys, but I do not understand why I was bleeding.

Guess that this just shows the importance of regular checking of INR levels while on warfarin.

I stumbled onto this site while trying to find a reason for these headaches I get sometimes for no" apparent" reason. Imagine my surprise to find your testimonies about your lives on warfarin sodium.At 38, I had surgery to repair a congenital defect of the aortic valve and had to have a hema-shield graph to repair an aneurysm of the aorta. That was in Oct.2002. Warfarin has been a part of my life since then. I was also put on anti-depressants because my family Dr. thought I was depressed since I repeatedly complained of not feeling well.(I took myself off the anti-depressants a couple of years ago.) Extreme fatigue , serious memory issues, thinning hair,dizzy spells and numerous other ailments continue to plague me.Add to that a large weight gain ...and, well, you get the picture. If anyone knows of an alternative to taking this "poison", PLEASE, PLEASE let me know. I just WANT MY LIFE BACK!!! I actually cried after reading this blog. As I explained to my husband, I suppose it was from the sheer relief of knowing I was not going insane!!!

horrible...started taking coumadin in November of 2007--it is now July of 2008 and in recent weeks I have had the most horrible bruising all over my body--deep maroon and deep purple and HUGE! One covers my hip on my back completely and I have others all over me. I have been having severe fatique, widespread pain to include my entire abdominal cavity, my lower and upper back, my sides, sudden headaches, and a general feeling of malaise, weakness in extremities...I am not taking this medication EVER again and I have an appt with my heart doc in a few days. I feel like I've been run over with a paver and aspirin is obviously a better choice for me. What's the use of preventing clots if your quality of life is s__t. After all, it is basically rat poison. Seriously, folks...look at the ingredients on both.

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:
******
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 was on Coumadin for a blood cloth I had last year(I originally started on 2.5mg and kept getting bumped up higher and higer as my PT/INR tests kept coming back).

I had most of the symptoms described here. The three worst being fatigue, memory loss and hair loss.

I remember constantly being tired on this medication. I had to go back to work after a few months and I remember not being able to lift much of anything and being extremely tired.

When I would take showers I remember running my hands through my fingers and literally pulling out clumps of hair. Each and every time. I thought I was going nuts.

The worst was the memory loss. I had severe short term memory loss like you wouldn't believe. I would be fine one minute and then space out and I literally could not remember what I had done the day before.

I am 24 years old and I had a pulmonary embolism last month. I was on the birth control YAZ for only 3 months, and that's what doctors seem to think caused it. My insurance only paid for me to be in the hospital for three daysand I was sent home with lovenox shots and Coumadin pills.

One month later, my INR is still unstable, fluctuating so much that they are checking it twice per week. My dosage is constantly changing. I have a red, painful rash on my buttocks - it hurts of sit for more than a few minutes. I am losing clumps of hair. I have lost my libido. I am very irritable and snap at my husband several times per day. I have a headache almost daily and frequent nausea.

I hate these side effects!

I've been on Coumadin for one month after having a pulmonary embolism (caused by birth control). I have painful red patches that look like clusters of pimples. I also have fatigue, nausea, headache, loss of libido, and irritability. I am 24 years old and just got married 6 months ago - these symptoms are ruining my "honeymoon period."

My father is currently in the hospital for his second internal bleeding from coumadin. He had a GI bleed and was discharged a month ago, put on coumadin AGAIN , supposedly monitored and wound up in ICU again, this time he had trouble breathing and was intubated and sedated for two days. I really thought Coumadin killed my father and in reality it almost did.....Now the hematologists are saying he is extremely sensitive to it, and his only other option is heperin shots which he refuses to do (that also has risk of bleeding). he is going to live with the chance of stroke rather than take coumadin a thrid time which is what they are suggesting. (idiots) . he has atrial fib and needs to be on blood thinner but at this point he would rather take his chances or take aspirin even though the doctors are saying it won't work as well. Hopefully there will be new anticoagulants out in the market soon like there are in Canada and Europe.

Coumadin KILLS....8,000 people a year bleed to death from coumadin......yes, it helps people too but judging from this site the side effects are awful...if you can avoid coumadin you should...

I suffered a Pulmonary Embolism December of 2005. Following, I found out that I have Factor 5 (later we found out that all my siblings have it as well as my father). I have been on Warfarin since. I have been told by a few doctors that I will be on it for life. I have also been told by other doctors that I should have had filters put in my lungs so that I don't need the Warfarin anymore. Prolonged use of Warfarin is terrible for you, they say. At the time I started taking Warfarin, I was 39 years old. After 6 months of use I began to loose my hair as well as the curls diminished. I also developed discoloration on my upper lip, face and forehead. 8 months later I was told that I was pre-menopausal...my hormones were changing....night sweats, dizziness, nausea, severe abdominal pain, digestive problems, bowel problems, severe weight gain. They then told me that I had Vertigo and that they were not sure why it began. I am now suffering severe memory problems. When watching a movie, if a commercial comes on I forget what I am watching. I can't read without nausea and dizziness. I get headaches, terrible leg and arm pain. My concentration is very poor. I can't remember what happened the previous day or who my customers are. I don't know what to do. If I stop taking it I will run the risk of another horrible embolism (20% survival rate). My children, 12 and 15, have already lost their father to cancer. They are very concerned of loosing their mother.

I'm 46, female.. developed blood clots on my lungs for apparently no reason, found them when going to ER and complaining of bad headache, nausea and left shoulder and back pain. I haven't had a recent surgery, nor was on birth control.

I'm dealing with anxiety, depression, unusual headache, horrible back and upper shoulder pain, itching of head, hair falling out during shampooing, , tightness in chest, trouble swallowing, really bad pain in hips, legs and feel like feet swell. I don't sleep well, even on Ambien.. doesn't keep me asleep. I awake in the mornings around 4:30 with diarrhea, nausea, headache and feel awful. Never get a good nights sleep. My hips hurt as well as dealing with parathesias down right arm and into hand.. feels like needles sticking in my hand. Most days I feel wiped out in the afternoon.. as I try and drag myself out of bed to get some excersise.

Does anyone deal with parathesia's down their arms or hands.. what feels like nerve pain?

Has anyone ever tried Aggrenox, also known as Dipyridamole instead?

Or actually tried the real Coumadin, instead of the generic Warfarin?

Has any other woman out there been told not to use a tampon when on her cycle, as this will cause more menstrual bleeding?

I'm so tired of Dr.'s not having personal experience of their own with this drug.. and telling the patient that they are crazy and need to be on anxiety meds or anti-depressants. I just found out that Warfarin is the main ingredient in RAT POISON..

Has anyone EVER gone the totally nutrition route, juiced and gone radical, telling their Dr.'s that they were getting off of all meds?

Does anyone suffer from feeling like their ears are full, or hearing loss?

I'm so tired of feeling afraid.. and tossed around by Dr.'s who really don't want to do the research, nor listen to their patients.

I'd love to hear from anyone who has some insight..on any or all of the questions..

Hi,
I have been on Warfarin since 2002. I suffered multiple pulmonary embolism's in both lungs. My first was in May 2002 and even though I had excruciating pain in my left shoulder area & could not lay down as this worsened the pain, the NHS x-rayed my torso!!!! & sent me home with medication for a kidney infection. I gave it a few weeks but the pain did not go completely & was moving to my right side, I was coughing up 'tablespoon' size clots of blood. My GP was not happy & spoke to a colleague at the hospital. I was sent straight in,(July) thorough tests done & I was found to have suffered multiple PE's.
I tried to sue them for medical negligence but it was turned away by the court as there was not enough evidence on my notes ie; some info was not written down & most was unreadable to even other medical professionals.
Since Aug 2002 I have been on Warfarin & am on this for life.
A blood test showed that I had a genetic blood disorder called 'Factor V (5) Leiden heterozygote'. This causes my blood to form clots much easier & quicker than the average person. If you have this disorder, as a woman it is important that each time you have a child you are treated with Heperin after each birth. I had 5 children & was not treated therefore I suffered with my PE's.My children have been tested for this & 3 of them have it. My daughter was glad she found out before having children as she hasn't had to suffer what I went through.
I ask one thing.... Please TELL your GP that you want a test for the above disorder. As I suffered my PE's & that I have this blood disorder I have to stay on Warfarin for life.
If you need any more info I will tell you as much as I know. Feel free to ask questions. my email is; ******

Last Christmas (07) I was diagnosed with pneumonia in the the right lung and x rays ordered. Xrays revealed an "unknown mass", or so they thought... they decided to redo - confirmed them and ordered CT scan... mass was gone, but there was PE in both lungs... so started the coumadin. I am type 2 diabetic as of Jan 07... have been managing my diabetes with healthy diet and regular exercise (A1C 7.4 to 5.4 in 9 months) ... no drugs... so the prospect of coumadin for life bothered me. However, my doctors all made a great case about how safe it is compared to other drugs... I lost 35 lbs in 07 after changing my lifestyle... and felt great. I am here today because I gained 20 lbs in 4 months of coumadin therapy (no change in how I was living), have aching muscles, chest pain and shortness of breath, and thinning hair.

After 2 days on the web I find only doctors and pharmacies say no side effects, but the hundreds of testimonials of actual coumadin guinee pigs like myself are finding a lot in common. For me, Im off it tonight.

I've been taking Coumadin for five years without many side effects. I've never gotten a rash from it, but my new girlfriend breaks out in a rash whenever we come into contact. Could she be getting the rash from my Coumadin?

I am a 33-year-old female. I was taking YAZ birth control. I woke up on a Friday morning with a bad cramping feeling in my left calf. By the end of the day, I was limping. By the middle of that night into Saturday morning, I woke up in such excruciating pain. I could not walk without help. I went to the ER. They ran an ultrasound and found nothing. They said I had a "pulled muscle" and sent me home. Went to my PCP on Monday. He said it was "phlebitis" and sent me home. He told me to return in 3 days. Did that. This whole time I told them my left foot was cold, the leg was discolored, and that I could not walk! Hello! I went back in 3 days, but this time he was finally alarmed when he couldn't find a pulse in my left foot (never checked that in the first place) and sent me back to the ER. The same jerk ran another ultrasound, and there was the clot. I've been on warfarin since February. In the beginning, I had TERRIBLE HEADACHES (which have since subsided). Now I am dealing with this: CONSTANT BODY PAINS (especially my back and ribs), OVERALL BODY SORENESS (kind of like when you have the flu), FATIGUE, DEPRESSION, ANXIETY, BLOATING AND GAS (I wake up with a huge painful puffy stomach every morning), CRAMPS (like having a period without one), sometimes DIARRHEA, STOMACH ACHES. When I reported the initial body pains to both the specialist and my PCP upon my follow-up visits after being discharged, both looked at me like I was crazy or making it up or something. I came home in tears after seeing the specialist. I thought he would be the one to know about this stuff! Instead, he made me feel like an idiot or crazy person. I was totally insulted and cried on the way home. I am so annoyed and have lost all faith in doctors. They should all have to retake their Anatomy and Physiology courses so they can be reminded what their ears are for. Why don't they listen to their patients? This is insane! I am so disgusted with this whole mess. I just want to give up.

Needless to say, Warfarin almost killed me. I was put on it after an apendectomy gone wrong which then turned into a bowel resection. In between the two surgeries I ended up with pulmonary emboli. I was put on Warfarin and also had a vena cava fiter put in. I'm a 40 year old female and have never felt so sick in my life. I was exhausted, constantly throwing up and had chronic diarrhea. Also my INR elevated to an 8 after constant vomiting causing the need for a plasma transfusion. Ugh! I kept telling my Drs. that I thought it was the coumadin but no one seemed to listen. As a result of my last hospitalization (7 admissions since 12/5/2008) they finally took me off of the coumadin (Warfarin) and now I am a totally new woman. The stuff took a week to get out of my system but thankfully I feel great. I hope this is helpful to anyone suffering.

My father has been taking Warfarin for 13 years now 2.5mg a day. He's been complaining of headaches, heavy feeling in his head, dizzy spells, extreme fatigue,swelling of his legs, spontaneous numbness of his fingers, blurred vision, cold hands and feet, loss of balance and memory loss. I have spoken to his Doctors and no one believes him that the Warfarin is doing this to him. By the way, he was diagnosed with AF 13 years ago.

Does any one experience the same symptoms? what can he do? he is 77 years old.