Inr symptoms and conditions

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?

Had a mitral valve replacement with pigs valve in September 2008. Told I needed it and would feel much better. Two weeks later had Atrial Fibrilation and was put on warfarin together with bisoprolol (beta blocker). Was cardioverted in December but am still on Warfarin 7-8mg to keep my INR at between 2-3. I experience such awful side effects, that seeing thig site proved that it was not all in my head.
Symptoms, hair loss, bleeding gums, painful legs, weight gain, fatigue, headaches, blurred vision, tender skin, depression etc. etc.
I feel depressed and wish I hadn't bothered with the operation, as I feel worse that before!

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 All, Hope everyone is holding up well. I've been on warfarin for year and a half now and like most of you i find it has changed my life a lot. I'm only 22 and i hate taken warfarin. I have gained weight and feel depressed. The thing that scares me the most is that i was sick at the weekend and i found there was blood in my sick!!! Has this ever happened to anyone before as it scared me a little.

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!!

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.

I am 72 years old and in 1995 I had an artery blockage and had angioplasty.Upon my release from the hospital I was put on several prescriptions, beta blockers, cholesterol, Aspirin, Vitamins, etc. which I had been taking regularly for 13 years without any problems. In 2008 after having chest pain and going to the hospital my heart doctor advised me I had Atrial Defibrillation and put me on Warfarin and also told me to stop taking all the vitamins I was using along with my daily aspirin dose and one of my prescriptions. Since then I have had constant shoulder and muscle pain in my arm and leg. I have had several treatments by a chiropractor and several physical therapy treatments and the pain has not subsided. My memory has gotten worse also however I thought that was due to my age until I read some of the above side effects of Warfarin. I definitely have a lack of energy and also changed my diet due to the Warfarin. I have informed my heart doctor about the problems and he advised it is not due to the Warfarin. I don't agree with him after reading all the posts, but I am not a doctor. I will continue my prescribed dosage and Pt/Inr tests as schedule for a while, but if my pain etc doesn't get better I will probably do like the lady's posting and stop the warfarin on my own.

I'm 21 years old and I had a PE December 2008 (a week after my birthday) and spent the Christmas holiday in the hospital. They don't know what caused it. I started out doing lovenox shots (which was horrible) and then switched to Warfarin. I have not been able to stabilize my INR and I've had to go to get it checked at least every other week for 5 months. It's so draining. At first I did everything by the book as far as eating right, not drinking alcohol, not shaving my legs but honestly I'm getting fed up. I'm tired of having to restrict my diet so much and be tired and depressed ALL the time. I started shaving with a razor again a few months ago bc the electric one does nothing. I also go out to the bars with my friends a lot more but it's so hard to be a new 21 year old in a college town. I want to be like all my friends and go out and have fun without having to think about the consequences.
Supposedly, I'm finding out on June 17 whether or not I'll be on warfarin for life. Sometimes I think that if that is what the doctor says, I will tell him no! I just don't think I can do this forever. It doesn't get easier and none of my friends understand. They don't know how bad I wanna cry every time they say "At least you are alive." Give me a break...

Responding to a couple of posts: Low energy and leg cramps are signs of low iron, you might be anemic, ask your doctor to have your iron checked at your next blood test. Also, ask about taking a multi-vitamin, all of the literature about Warfarin mentions not taking vitamins but it’s more about consistency. I’ve been taking a multi-vitamin daily - with my doctor’s permission - and I’ve had very consistent PT’s and INR’s. I’ve been on 7.5 mgs of Warfarin daily for six months and am holding steady. It is very important to take it every day if you do take a vitamin, it’s important to be consistent.

And about the socks, they are called compression stockings and can be prescribed by your doctor, or some are also available at drug stores, ask a pharmacist at the store.

And also about headaches, it helps me if I stay hydrated. When I don’t drink enough water I tend to get headaches.

I’m back to exercising at my pre-pulmonary embolism rate, it took me six months to get there, and I started slow, but my body has gradually responded. I’m 52 and was pretty healthy before I got sick. Just keep at it, you’ll see results (and feel better too!).

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.

I am 37, and developed a DVT in my left calf possibly due to birth control pills. I was tested for Factor 5 Leiden and since I was positive that may have been a contributing factor as well. Waking up in the middle of the night and first thing in the morning with excruciating pain was a daily occurrence and finally after 2 weeks of Lovenox injections and warfarin the pain subsided. I still experience post thrombotic pain in the back of my leg three months after starting the medication. My INRs are inconsistent and my doctor keeps changing my dosage. I have been avoiding all food that that can interact with the meds, it is extremely irritating. I have been doing an hour of low impact exercise daily and am looking forward to when I can finally go jogging and increase my cardio workouts. I can't wait till I can finally be off the medication it affects everything I do.

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.

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.

24 yr female diagnosed with PE and DVT. I have been on Warfarin since may of 08 and it has turned my world upside down. Weight gain (20lbs in 3 months), major hair loss, very bad acne, and memory loss. Not to mention i can't shave my legs or anything else for that matter with out getting major in grown hairs. I NEVER had any of these problems before. I am loosing muscle mass and feel as if I am a 70 year old woman. I don't know what to do but cry. The doctors keep telling me its not the medicine but I feel it is, my body is telling me it is. things are not easy, and it is affecting me I feel for the rest of my life.

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 have been on Warfarin for 12 years and I am only 18 years of age. I was born with a congenital heart defect and have had many operations in the first 6 years of my life, including 3 open heart surgeries.
When I was 6 years old I had my last open heart surgery where they put in a St Judes mechanical valve. I don't know what my dosage was when I first starting taking Warfarin, but I am now on 7.5mg with an INR between 3.2-3.5

Sometimes I feel like I have a little bit of memory loss. I would forget the most basic words.. but I'd slightly remember what it looks like. I'd have to sit and think for a while until it would pop into my mind again. I really do hope that I don't get other side effects such as hair loss :(

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.....

im on warfarin 3.5 mg everyday since nov 2007 because a pulmonary embolism and a second one on jan 2008 while on therapeutic INR. in march 2008 i had a massive bleeding in my ovary and had an emergency operation to remove the blood from my belly. I have serious anemia, 2 years now, and i am feeling that my life is being wasted away!!! I have serious pain on my neck and back and my left arm is really sore i cam barely move it. I have no energy at all and i am surprised of how i have been trying to get extra energy from where there is nothing left!!!.
I am not sure that those symptoms are relted to warfarin, all I know is that I didn't feel this way before!! And I don't really know how bad it is to have anemia and at the same time be on warfarin.

I also want to be me again!!!

i started on warfarin 10 weeks ago for a single medium P.E. on my left lung (this could be because i have had difficulty in moving around for the past three years following spinal surgery). However, at first i felt fine on warfarin, but in the past four weeks i have noticed changes. Sometimes i get fluttering in my chest but only last for about 2-3 seconds then goes away, Doctors told me this is how my body reacts to the clot. I also have some aches in my limbs and back (put this down to the new job). Furthermore, i have noticed hair loss and damaged, fragile hair.
When this P.E. occurred i was walking with a stick due to the spinal surgery. But once i started taking warfarin my back has recovered so much so that i have returned to work after 3 long years. The job i perform now is doing removals and H.G.V. driving.
I am only 34 years of age and i am taking 9 mg of warfarin a day (with a INR of 2.6) and 30mg of Lansoprazole a day for my stomach (you can feel a bit bloated sometimes).

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!!!

I started Coumadin back in March and it wasn't too bad. We got my INR straightened out pretty quickly and everything was fine. About midway through May I began having stroke symptoms, and a hard time breathing. Just this past month, I was completely numb on a regular basis, I couldn't exert myself in any way without my body becoming tingly and numb, I also have had a non stop headache for nearly two weeks.

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!

my body is weak my neck hurts I cant keep my inr up My eyes and nose leak water and my face and left hand and foot stays swollen. PE and Dvt and Factor v homozygous and cushings syndrome. Nausea I lost over 20 lbs in one month tachycardia all the time. CANT CONTROL BLOOD SUGARS I HATE THIS DRUG. I AM 41 FEMALE