Warfarin Sodium and blood clot

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?

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.

I am a 40 year old female and have been on warfarin since september 08 when i developed a blood clot in each lung.Doctor's reckon it was caused by my Crohns disease.I had also given up smoking 9 months before and was feeling good about myself but since starting on the warfarin i feel OLD and FED up with everything,6 weeks after starting warfarin i started getting tired all the time, my head doesn't feel like mine, i feel depressed all the time,i get strange pains in my head,my shins feel weird almost numb,can't concentrate,vision feels weird,excruciating pains in my joints to the point i couldn't walk and WEIGHT GAIN like you wouldn't believe and my whole body generally swollen.I thought i was going mad until i found this website THANK you to everyone xxxxxx

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 recently delivered a healthy baby girl (Feb 9th) in which 1 week later I developed a blood clot on my brain and was hospitalized for 1 week after experiencing 4 seizures. They told me it was pregnancy related and I would be on warfarin for 6-9 months until the clot dissolved. I too am experiencing: fatigue, extreme dizziness, light headedness, I am seeing spots all of the time, I am getting leg cramps and foot cramps a lot, I feel really weak, and just plain old. I will be 37 years old this July, and I feel way too young to be feeling this way all of the time. I can not handle going to the lab 2-3 times every week for blood work, my veins are collapsing and bruising really bad. I cry every time I leave, my husband must think I'm such a loser. It has been almost 3 months now and I just got my first period since my daughter was born. I thought I was going to bleed to death. My husband had to watch me around the clock to make sure I didn't have to be rushed into emergency. This sucks....I'm trying to remain strong, and doing lots of praying these days....Thanks for letting me share my story.....

I've been on Wafarin since September of 2008 because of a massive DVT stretching from my jugular vein to my right arm. Since the initial injection of Heparin and oral consumption of Wafarin I have experienced daily migraines. They seem almost like 'pressure-headaches' pushing on the sides of my head, temples, forehead and the bridge of my nose. My thrombosis doctors have sent me for Ophthalmology tests, MRIs, and plan to send me for Neurology tests as well to discover the cause of my headaches. They've put me on codeine, Tylenol 3's, Gabapentin, Naproxen, and Co Sumatriptan because of the fact that I'm so immune to painkillers in general (For the blood clot pains themselves, I was on Hydromorphone, Morphine and Codeine). Although the Co Sumatriptan along with the Tylenol 3's give me some relief, I can't help but wonder if the cause of my daily migraines are from the Warfarin itself.
My doctors are reluctant to agree with me, saying that they plan to take me of Warfarin within the next few months, but aren't certain of exactly when.

I was taking warfarin for about 2 months 8 mg daily due to a blood clot in my left arm, i also have witnessed headaches, dizziness, always tired and fatigue. I also told the doctor about all this and he said it's not the medicine, I don't know what else it could of been because i wasn't taking any other medication. my life remained the same as previous with the exception of the warfarin. Anyway, i discontinued taking the medication because it was killing me to take it. I will now have to take my chances.

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.

I have been taking Warfarin for 3 months after an Infarct Kidney. (blood clot in my kidney) was ordered to start taking Warfarin, within a week I started getting a very dry mouth like as if you would get after a good night of drinking! After about 2 months the dry mouth started to go away and is only slightly bothersome, however, now I am experiencing a light headed and a dizziness feeling, not to the point where I am gonna pass out, but very uncomfortable. I have a hard time concentrating, when I turn my head quickly to look or because I hear something is when I will experience a quick rush of dizziness. I have been taking about 7-9 mg per day depending on my INR level. Anyone have any ideas that could help me with this?

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 HAVE BEEN ON WARFARIN FOR 6 WEEKS SINCE A BROKEN FOOT GAVE ME A BLOOD CLOT FROM MY ANKLE TO MY GROIN. I'M ONLY 34 AND I HAVE NO ENERGY, I'M LOSING MORE HAIR EVERY TIME I BRUSH IT, AND I CAN'T CONCENTRATE. I'M SUPPOSED TO TAKE IT AL LEAST 6 MONTHS AND THEN HAVE ANOTHER ULTRASOUND TO SEE IF THE BLOOD CLOT IS GONE. THE DOCTORS SAID THIS COULD BE LIFELONG. I'M ON 5MG RIGHT NOW. IT SUCKS.

Hi, I have a blood clot in my arm,From mri dye.Since then my life has been a nightmare.On lovenox 2x time daily on my 20 with the shot. my stomach is black and blue and yellow from the shot.And i have big bumps in the stomach area.Now taking 6mg of Warfarin. Must a gain 6 lbs on that drug. I told the doctors about the side affect. They just look at you with a puzzle face.I go for weekly blood test. and my blood is still real thick.

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'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 am a 36 year old female, and have been on warfarin for about six months now, I was also on it back in 2004 for six months I had a blood clot in my left lung in 04, and was off of them after six months. But now i Dec 07 i had a clot in my leg, and several in my lungs. I have to be on it forever now according to my docs. It sucks, I am having very bad memory loss, blurred vision also, I get dizzy a lot, and as of last week my levels are not high. I was on a smaller dosage the first time around, but I am currently on 7.5 mg, and it sucks, I want to be off of these. So I also do experience the same symptoms as the rest of you. Memory loss is really affecting my everyday life. Also depression is a big symptom also, I have always been a happy person, not any longer.

I have been on Warfarin for two years now and on it for life, i had a blood clot in my left leg. While i was reading everyone's side effects, it was like i was writing it myself...I experience the same symptoms........Foggy mind, short term memory loss (i even have a notebook now wherever i go now), fatigue, thirsty all the time, headaches, strange sore sensations in my legs/body especially when its cold.....all of which i am told Warfarin has no such side effects and that im imagining it.........i have been told this over and over and over. Im soooo glad im not crazy lol and that there are also people out there that are experiencing the exact same stuff that i am.

Hi
I had a blood clot in my l. leg. I had an angioplasty and was put on 4mg of Warfrin daily.
Since I started on Warfrin I have developed a hearing loss and a rather severe feeling of soreness when I rise from a chair. I really feel like I can't make it thru another few months.
Maybe the warfrin is not the problem. I have heard of no other warfrin users getting hearing loss.
Love to hear your Warfrin experiences
Ernie M.
Canberra, Australia

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.

Female, 27, 6 months on Warfarin 7mg daily.

Diagnosed with functional protein c deficiency (congenital) in May of 2007 after suffering a blood clot that travel down into my toes. I’ll have to take warfarin for the rest of my life but I have been extremely lucky with lack of side effects. In the beginning I was tired, depressed, leg cramps, moody and slight weight gain. I’m happy to say that all of those symptoms besides the leg cramps have subsided. Of course after reading some of these posts and seeing that the side effects could occur years later has me a little worried. I’m interested in learning about any kind of herbal remedies if anyone has any suggestions

After sinus surgery March of 07, I developed a large superficial blood clot in my left thigh. The doctor started my on 1 Lovenox shot and 5 mg of Warfarin a day. After 4 days, I felt a pressure and heaviness in my chest, and was diagnosed with bilateral pulmonary embolisms. Was in the hospital for 3 days and Lovenox was increased to 2 times a day. After being discharged, it took me nearly 2 months to feel normal again, but I still had to remain on 5 mg of Warfaring for 4 more months. Everything was fine until mid August when I missed taking the Warfarin for 6 days. Once I started taking it again, I started feeling terrible......pressure and squeezing feeling in my chest, anxiety attacks, dizziness, feeling hungry, diarrhea and nausea at times. One evening I went to the ER because I thought I was having a heart attack. All the tests showed I was not having a heart attack, and the D-dimer test showed I was not having blood clots. Even had a cardiac CT scan that was completely normal. It is time for me to get off the Warfarin now, but my doctor doesn't want to take me off it until these other symptoms go away. The doctor now has me taking Lexapro (for anxiety) and Prevacid (for acid reflux), and I am going to see a Gastroenterologist to see if I have acid reflux. I don't know if Warfarin is the cause of my problems, but until all this happened, I was a healthy 59 year old female. I just want to feel normal again!

I have been on Coumadin for about 2 months now after surviving a cerebral sinus venous thrombosis (blood clot on my brain - akin to a stroke). I am s 34 yo female who races triathlons and leads a very active healthy lifestyle. My side effects seem to be mild compared to what I read of others. I am on 5mg/day, except 1 day a week I take 10mg. My INR has been pretty stable. The side effects I notice are mild forgetfulness which I am hoping goes away as I start my 3rd year of law school next week! I also had some weird skin peeling on my hands, but that has subsided. I seem to urinate more often than normal and soda pop tastes weird to me now. Anyone else experience the frequent urination and/or taste issues?
Thanks!
Dana :)

I have been on Warfarin since December 2003 for peripheral vascular disease. I was on the same dosage, 7.5 mg, up until I started seeing a different DR. last year and he upped me to 9.5 mg a day. I noticed I started losing a tremendous amount of hair. Dr put me on prenatal vitamins with no improvement. Hair is very dry and brittle. Have had alot of lightheadedness to the point where I feel I want to pass out but don't, now it affects my driving and work. My head feels like it wants to explode sometimes and have lots of migraines. Anyone else????

My second run in with a blood clot resulted in passing out on my way to pick up my 8 yr old daughter and being rushed to the ER because of a PE (near death), I'm thankful to be alive however (no reason for PE and being on coumadin for the rest of my life) I feel so tired now, I don't want to go to work, I can't concentrate, I suffer from dizzy spells, I'm always hungry (weight gain), nausea sometimes. before passing out I was working out, doing Taebo, the balance ball thing, walking. Now I feel like I'm and old woman. I'm 32 yrs old and taking #5 coumadin and I feel so bad the majority of the time and yes the doctors say "it's shouldn't be the coumadin" but I think it is my whole world has changed and I'm just trying to get back to being the fun, outgoing, active me. I miss myself so much, its like I'm depressed. I MISS MYSELF.