Warfarin Sodium and lungs

I'm a 70 year old male, never had health issues but 9/30/09 had blood clots in my lungs that nearly finished me had not I had on hand DMSO which my wife applied liberally to my chest while I writhed on the floor gasping for air. By the time the ambulance got me to the hospital all symptoms gone, never returned. Quit warfarin after a week. Feeling fine. Check out the research of Stanley Jacobs, MD on DMSO and keep it handy. It does dissolve clots without side affects.

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.

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’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.

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.....

About 8 weeks ago i was doing a really hard training session and had to pull out because of severe chest pain. i was taken to hospital where i was for 2 weeks and told i had multiple 'quite substantial' clots in both my lungs which had caused tissue death through lack of blood supply - pretty scary for a fit and healthy 18 year old. since then ive been having INR blood tests twice a week and been on Warfarin. they say i have to be on it for 6 months then they can test to see if its a genetic thing and if i'll have to be on it forever. im doing just as much exercise now as i was before it happened but i've put on about 5kgs. have other people been told they can't drink while on Warfarin? i asked my doc if he meant moderation or zero and he was like 'do you want to have a stroke?'
what 18 year old gets PE? it's such an old person thing, and seriously stuffed up my life, hopefully only for now.

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 have been on warfarin since April 2008 when i had a clot in my left leg. since, i haven`t really had much going on until last week. i was rushed to the hospital by ambulance. i got dizzy and had a very cold wave rush up my body twice. when it was over, i couldn`t hear anything and my temples were tingling and my heart rate was elevated along with my bp. the er drs didn`t seem concerned with any thing that had to do with the dvt or the warfarin. their response???????? you drink too much coffee. WELL. i haven`t had a cup of coffee for almost a week, and have also quit smoking. i am still dizzy. my head feels heavy. i get little cool rushes that almost take my breath away, i don`t feel like ME. i feel like someone has taken over the me i knew. my family doctor has done liver, mono, hepatitis, b12, folic acid profiles, all negative. had a ct scan yesterday, normal. having an echocardiogram next week and having a holter monitor put on for 24 hrs to monitor my heart. i have done nothing but sleep since this episode. my husband is scared to death i`m gonna die during the night, he wakes up just to check on me. i haven`t been sleeping very well, as i`m afraid i`m not gonna wake up. i am only 40. i am not ready to let my life go to pot because of a drug that all the doctors insist is "safe". well i don`t know. call me stupid, but if its so safe, why do they kill rats with it????????????

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.

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.

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 am 31 years old. I was first on warfarin when I was 15. I was on the BCP and a smoker as well. just 2 months of being on the pill I developed a DVT in my left leg. I was on the warfarin for about 2 years then came off. I reember being tired alot but that was it. Then again when I was 22 I developed yet again another DVT in my L leg.. as well as 3 PE in my lungs. I was prescribed warfarin and I was on that for 2 years .. was taken off due to dizzy spells. Now again I am on warfarin .. for the rest of my life. I have a genetic disorder for clots and had a mini stroke. By the grace of GOD I only have a limp in my right foot... the side effects I experiance now are dizzy spells, headaches, blurred vision, and muscle aches and spasms. If your docot is denieying these side effect they really just dont think its serious enough to take you off. All my doctors over the last 16 years have all told me of these side effects. What you eat and drink has alot to do with it and other meds you may be takeing. I am also on chantex and beleive the two together are to be the cuas se of my syptoms. I also experiance tingling for shor periods. I have been on it now for one week. My doctor told me once it is regulated to a point where I dont have to up my dosage or lower my dosage and I am pretty much at a steady dosage the side effect will cease, until then I think if you dont like your docotor and dont beleive hes looking out for you in your best interrest yo ushould find another one.... Thats important... you must have a docotor you can trrust and one whom will listen to you.

In July my calf hurt for over a week I went and had it checked out and they found a small DVT I was sent home and prescribed Lovenox and taken off my birth control. The next morning I had trouble breathing and went to the ER I had multiple PEs in both lungs. I was in the hospital for 5 days and sent home with a non-therapeutic INR, Lovenox shots and warfarin sodium. I have to regularly increase my dosage I am now up to 15mgs 6days a week and 10 the 7th day. I have recently started seeing small unexplainable bruises, even though my INR is still not and only has been for a short time since my release from the hospital. I have had severe chest, leg and other body pain. I have been to the ER so much I have just stopped going. I have horrible headaches and fatigue especially after they re-up my meds. My periods have been off the charts as well. I think I am done with this and I am really considering taking myself off the meds

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.

Had a PE in both lungs 10.07 on warfarin 5mg a day, very sore ,aching joints, tried, HOT FLASHES day and night , just tried hard to find excitement. I'm 46yrs was very active, had lots of engery. Can't drink alchol. Feeling very old. Carpal tunnel worse in elbows feels likes the needal goes right threw the bone.

Headache, a slowly seeping oily rectal discharge, cooling sensations in my head and chest, anyone else experience this? It is frustrating and I don't know what to do about it. I am 35 years old and had some blood clots after delivering my baby 3 months ago.

I had a PE 2 weeks ago,ended with cloths in both lungs,had injections for first week,now just on warafin 10mg daily.Only yesterday I thought I was going to black out,like a huge rush thru my body,and always feel light headed,like most the doctor said these are not side effects of warafin,but prior to taking warafin I never had dizzy spells.Just like to thank all you people for sharing your thoughts,as I feel now that at 42 I have to live like an 80yr old,and its comforting to know im not the only one.

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????

Thank God I'm not the only one! I was actually relieved when I found this site. I was an active 60 yr. old female until hit with blood clots in lt. leg that went to lungs. I've been on Warifin for almost four months these are my side effects: extreme fatigue, back and leg pain, over-all weakness,decrease in flexability of limbs, dizziness, vision changes even from day to day, memory loss( I've always been known for my great memory). I did mention these to my hemotologist last month and he sent me to ER. Cat scans of head, chest and abdomen all were normal. Every doctor I have seen says Warifin is not to blame but all this has developed since I began taking it.