November 8th
2009
10:34 AM
i am an active 63 year old man who had DVT about 6 weeks ago. i run about 10 miles a week and speed walk another 5 miles. also do weights once or twice a week. since starting Warfarin I have gained 8 pounds. my only solution will be to cut down on the extra calories. if it causes weight gain then rather than whining you have to deal with it
-- By flipper331a | Reply | Private Message me
November 4th
2009
2:13 AM
I'm a 47yo female & sorry for putting this as a reply to another post - new here:
Gosh.. glad I found this place - have been taking Warfarin for AF for about 2 weeks now and have been slowly sliding down hill. Thing is you just never know when to contact a doctor hey.
My symptoms, bloating, weight gain already, light headed, blurred vision, have had numbness & tingling in right arm and leg, and now I'm slowly getting colder and colder, and have a high sensitivity to light. Just started my monthly cycle and it's literally flooding, and I have an awful pain in the left hand side of my neck - it's sharp and unbearable at times. Some days when I'm driving home from work I feel I should pull over, not sure what my body is going to do to me next. I lack concentration, am crabby most of the time (and was picked up on that today at work) - and very emotional.
I don't like this at all - at what point do I mention any of this without seeming like a whinger?
I have a physical job, which has been reduced to 'light duties' due to the risks at the moment, which I'm grateful for. Today I bumped my thumb only slightly and it swelled up in a bloody lump - the blood has disappeared but the swelling is still there together with 'loose' skin where the originally larger swelling was. Everything seems just so weird.. I don't feel like ME any more - I want ME back :((
October 31th
2009
1:58 PM
I am a 48 year old female with a-fib. I am not overweight...just started falling apart since now I am menopausal. I've been on Warfarin for 6 weeks. My INR has hardly moved. I'm now on 8 mg and have my INR test on Monday. I started at a 0.9. Now I'm at 1.20 and have been there for three weeks in spite of upping the warfarin. I've not changed my diet except to exclude greens and green tea when I began the therapy. Everything else is consistent.
I just started exercising again a week ago. Something I haven't done in five years since I lost my sister. I bought a Total Gym and enjoy it. It has helped me get some energy back, has helped alleviate some of the mental fog, and has lowered the incidence of anxiety attacks. (I've been getting anxiety lately...since the mental fog and memory lapses...that bothers me since I love to read and write and the mental fog seems to be taking the joy out of it now.) The reason I decided to start strength training again is because of the joint pain I have been experiencing lately. I didn't have it before warfarin. I do now. Only one joint, though. The strength training does help, but every once in awhile, that sharp pain comes back to visit. It's just a little less now.
I plan to tell the doctor that I have begun strength training again. Not just because it's good for me and my heart, but it seems to help with the side effects of menopause and warfarin...without adding another drug like an antidepressant.
Warfarin...I believe is a life saving drug. BUT, I have to do my part too.
BTW, if I didn't have triple thick hair, I would complain about hair loss. Right now, it's a non issue for me. Just saves money at the hair dresser.
-- By karenwest1961 | Reply | (1) replies | Private Message me
September 18th
2009
3:44 PM
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!
September 2th
2009
10:34 PM
I'm so thankful for this forum as you really do begin to believe you're going crazy when every health professional says that warfarin is not the cause of weight gain since the start of your treatment. Whether it's the actual drug or how it interacts in your body or the cause of taking your warfarin, obviously based on all the testimonials here and on other sites, there ARE side effects that they are not willing to admit to. Or, they simply have not done the research or surveys to clinically support this. Regardless, while I hate this weight gain, I feel a little better knowing that I'm not imagining it. I work out 5-6 days a week and watch what I eat and still the weight creeps on. Siigghhh
-- By toronto1 | Reply | Private Message me
August 26th
2009
2:29 PM
I'm 48 and had a PE 4/2/09. I entered this site looking to see if hair loss was a common side effect to the Warfarin I've been taking and, lo and behold, not only do I now have an explanation for my thinning hair but the acne, the joint pain, WEIGHT GAIN (UGH!) and gas / bloating. The powers that be have decided that the cause of the PE was my Yasmin birth control pills (a huge law suit going on for Bayer now - the producers of Yasmin, Yaz and one other one) and put me on the Warfarin for 6 months to life - we'll see about the 'to life' part on 10/02/09. I think regardless, I'm going with 'Tannabo' and trying the Nattokinase once I'm done with the Warfarin. Thank you for this 'enlightening' website and everyone's input!
-- By sam624443 | Reply | Private Message me
August 23th
2009
9:33 PM
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.
-- By traby21169 | Reply | (5) replies | Private Message me
August 4th
2009
5:47 AM
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.
-- By kelly2009 | Reply | (1) replies | Private Message me
July 31th
2009
6:08 PM
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
-- By monifleur | Reply | Private Message me
July 15th
2009
4:12 PM
I am 26 years old. I've been on warfarin for almost eight years. I wish I had seen a site like this eight years ago when I started on warfarin (after DVT and P.E) I may have had some insight into the hellish two years that were to follow: hair-loss, depression, weight-gain. But I attributed all this to stress (it was pre-med varsity and I was under a lot of pressure academically).
Anyway, now my life is more settled, I eat right, exercise furiously 5 times a week...but I have digestive problems. Bloating, gas, overall discomfort in my stomach almost every night. I've cut out milk, wheat, coffee...nothing.
But tonight I started thinking...could it be the warfarin?
Does anyone experience or know about possible side-effects of warfarin on the digestive system, and does anyone have some useful advice????
July 12th
2009
6:51 PM
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!!
-- By palcook | Reply | (1) replies | Private Message me
July 8th
2009
4:43 PM
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 ******
-- By goawayclots | Reply | Private Message me
June 6th
2009
9:11 AM
I was diagnosed with Factor V Leiden after experiencing bilateral PE's in February 2004. Since then, I have gained A LOT of weight. Not that I needed to but dang. I am at my highest ever & nothing I do will make it go down. I am almost 80 pounds heavier than I was in 2004. Something is not right. I suffer from depression (have for more than 15 years). My medication doesn't seem to have the same effect. My joints are killing me so it's hard to exercise.
A side note, shortly after being hospitalized for the PE's for a week, I noticed my hair thinning. Doctor told me it was because of the "shock" to my system due to having the PE's.
I will have to be on Warfarin for the rest of my life. I turn 45 in November. Ugh.
Has anybody had the same problem with weight gain? Is there anything to do about it? I feel I am at the end of my rope & slowing losing my grip.
-- By stormie64 | Reply | (2) replies | Private Message me
May 24th
2009
12:14 PM
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.
-- By mariep | Reply | Private Message me
April 25th
2009
1:54 PM
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.
-- By tannabo | Reply | (2) replies | Private Message me
March 23th
2009
12:19 PM
Wow - I'm so glad I found this site. I am 43 years old and had a PE last August in both lungs - every test imaginable has been done and still no idea why I got the PE. I should be on Warfarin for the rest of my life but I can't stand it much longer. I have headaches every day, cold sweats, dizziness, can't remember things, can't concentrate at work and the WEIGHT GAIN! My doctor just tells me to eat healthier but watch those leafy greens! I get no support at all from her. She also put me on Cipralex for depression and I'm now considering going off both medications and seeing a Naturopath. I'm sick of feeling like I'm 80.
L.
February 24th
2009
2:33 AM
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.
-- By beverly4help | Reply | (8) replies | Private Message me
January 7th
2009
11:05 AM
I’m a 52 year old female diagnosed with bi-lateral pulmonary embolisms three months ago. I’ve been on Warfarin for those three months. The reason I’m searching this blog is because I experience chills at about 4:00 am every morning. It’s interesting to hear of others having the same issue. However, I have not experienced other side effects mentioned: weight gain, fatigue, hair loss, headaches, depression... One thing that I’ve not read about here is the actual physical effects from the embolisms. I do experience shortness of breath and fatigue but I attribute it to the healing process that is occurring in my lungs. I have a wonderful doctor that told me that the road to recovery will not be easy and there will be some set-backs along the way. She listened to my concerns about shortness of breath and prescribed a couple of inhalers that I use to make my breathing more productive. She told me me to exercise “gently” to help my blood circulate to aid the healing that needs to take place. I admit that it’s hard to exercise when I’m not feeling my best but the benefits are worth it. I’m now feeling better than I’ve felt in three months. I also reduced my calorie intake knowing that with my limited activity my metabolism would slow down and weight gain would be a risk. So I ask the people writing in with side effects to look at their situation honestly and see what changes they could make to help their bodies heal. Those with PE and DVT, are you exercising? Are you overweight and need to alter your eating habits? Do you still smoke? We need to take responsibility for our health. I am a healthy, active, non-smoker. My PE’s are probably the result of starting Hormone Replacement Therapy four months prior to my PE’s. I have no other risk factors. Once I’m off Warfarin my doctor will run blood tests to see if I have other clotting factors, meanwhile I’m doing all that I can to help my body heal. I wish everyone here well and hope that your health improves.
-- By bullette | Reply | Private Message me
October 6th
2008
11:14 PM
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.
-- By maggie14 | Reply | (6) replies | Private Message me
August 13th
2008
1:16 PM
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!!!
-- By ndg | Reply | (6) replies | Private Message me
June 30th
2008
4:51 PM
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.
-- By laslaman | Reply | (1) replies | Private Message me
February 27th
2008
6:41 AM
Been on 5mg Warfarin for past 2 months. Developed severe headaches, resulted in MRI brain scan. Thank God all clear. Severe hair loss and dry coarse hair, sour smelling stools, weight gain.Fatigue. But Doctors and specialists reassure you, none are from the Warfarin!!! DON'T THINK SO!
-- By mharper | Reply | Private Message me
November 7th
2007
7:16 PM
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
-- By eavabug | Reply | (1) replies | Private Message me
September 4th
2007
8:40 PM
58 years old male with atrial fibrillation. 2 years taking 7mg of warfarin and several months ago began getting an itchy purplish rash on my lower legs. Very annoying and I often scratch my skin until bloody. Seems to be getting worse.... wife says it's better than a stroke.... I guess so, maybe.
-- By xtopher50 | Reply | (1) replies | Private Message me
August 16th
2007
11:45 AM
I've been on Warfarin since Feb/04. I had 2 blood clots form in my leg and traveled in my lung and was dignosed with APS. At first I was on 12mg a day for about a year, now I am regulated at 10mg a day. For the last 2 months my INR count has been high (blood too thin) and was on 5 mg for 2 days in July/07 and then back to 10mg. This month Aug/07 my dr took me off my meds for 2 days, then back on reg 10mg. I will go back and check my INR in a few weeks.
I haven't experienced hair loss, but I have experienced migraines, weight gain (a lot!), blurred vision, black out with vision, and slight memory loss. And I am only 40 yrs old. Just wondering if you or anyone else has experienced any of these side effects.
July 2th
2007
9:51 PM
I'm a 36 year old female who survived a DVT and pulmonary embolism.
I've been on warfarin for one year. I was diagnosed with a protein c
deficiency. (most likely congenital). I'm having a lot of trouble keeping my
PT\INR in between 2 and 3. My Doctor is a real jerk. I'm looking into see-
ing a different one. Anyway, my symptoms are: lightheadedness, hair
loss, weight gain(I'm hungry 24\7),fatigue,numbness in my hands and feet,
hot flashes,redness on my nose and cheeks, and some kind of rash on
my right ankle, tachycardia,headaches, and blurred vision. I never thought
life could suck this bad. I've been taking anywhere between 7.5mg to
15m.g\day. Oh yeah I forgot to mention the worse side effect of all:
My period for 7 to 10 days. The 3rd and 4th day being unbearable to take.
Of course my Doctor says your not bleeding to death because you're not
passing clots. What an ___!!! My sympathy's to all of you.
June 5th
2007
9:24 AM
I've been on Warfarin since June, 2004 after having a Pulmonary Embolism. At first no side effects. It took 2 years to regulate INR. I take 6mg per day. In the last year though, severe hair loss, bleeding in my lower legs (skin) when my legs swell. I am not able to store iron according to dermatologist that I saw for hair loss. I've just been diagnosed with APS, anti-phospholipid syndrome.
-- By teachermom1984 | Reply | (1) replies | Private Message me
May 11th
2007
12:48 PM
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.
-- By lisha | Reply | (3) replies | Private Message me
September 9th
2006
6:51 AM
MY HUSBAND HAS BEEN ON WARIFIN FOR EIGHT YEARS AND HAS EXPERIENCED ALL OF THE FOLLOWING
COLD SWEATS
(SHORT TERM) MEMORY LOSS - A BIG DIFFERENCE LATELY
DOUBLE VISION
BLURRED VISION
SHADED VISION
EXTREME SUDDEN HEAD ACHES
NAUSEA
FATIGUE
DIZZY SPELLS
LOSS OF BALANCE
POSSIBLE TIA'S
AND MOST RECENTLY A BIG ONE -- LIVER DAMAGE
(SIGNS OF WHICH ARE ENLARGED LIVER, YELLOW SKIN AND EYES, JANDICE, THROWING UP, -- BASICALLY THE SAME SYMPTOMS OF HEPATITUS -- BUT THE HEPITITUS TEST WILL COME BACK NEGATIVE.
ALTHOUGH NO eR OR DOCTOR WILL SAY THAT ANY OF THESE ARE RELATED TO BEING ON WARFIN
HOWEVER, LIVER DAMAGE AND JANDICE ARE LISTED AS SIDE EFFECTS
-- By candicelarsen | Reply | (2) replies | Private Message me
November 10th
2009
11:13 PM
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?
-- By cricket2 | Reply | Private Message me