September 29th
2008
10:29 AM
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.....
-- By sallyjane | Reply | (3) replies | Private Message me
September 28th
2008
6:10 PM
Hello! After a 3 1/2 day stay in the hospital for atrial Fibb. which has since gone away and was likely cuased by extreme low blood potassium and sodium which has since been brought to all but normal levels.. I was taken off of Plavix a blood thinner which I had been taking since a heart attack in 2003, and put on the Warfarin, that was on June 22nd that I began taking Warfarin/Coumadin!. About 2 weeks ago I began having neck and shoulder pain, then slowly side and back pains deep down in the muscles. It is much worse in laying down position, have a hard time to sleep well, and if I trun or move while lying down the pain is very intense. I am going to assk the Dr. to take me off of the Warfarin and put me back on Plavix so I can see it it is the reason for the pains. I am quite sure it is! Please reply if you have the same symptoms as I do! Thanks, B.E.
-- By myself | Reply | (2) replies | Private Message me
August 27th
2008
2:18 PM
I have been on warfarin for approximately 16 years for DVT and PE x 2. i have my labs done and dosage adjusted as required. Now, I have been diagnosed with ALS or Lou Gerhigs Disease. It is such a rare disease that I have tried to find out if Warfarin for so many years may have contributed to my contracting ALS. I have asked "how long can a patient take Warfarin and what can happen with long time use?" No real answers to that question except that I would probably have died of a clot without the Warfarin. I really would like to know about long time use (15-20years) of Warfarin and any side effects or other complaints. Ken
-- By 300brutes | Reply | Private Message me
August 14th
2008
12:00 PM
Last week I had an issue with my INR - it has always been unstable, but this time was weird. My INR had been 6 and so I stopped the warfarin for 4 days, and went back on my regular 2 mg dose. Then we went on holiday to Washington DC for a week. 3 days in, my pee was the colour of cherry kool aid. Went to the local hospital (thank god for travel insurance). My INR was 7.89 - In the US this is considered critical and I was admitted, and treated with Vitamin K and 2 units of plasma. Within 8 hours my INR had dropped to 1.8 - now too low. The next day down to 1.25, and a week later I am still 1. I am taking fragmin now until I can get my INR theraputic again but Fragmin shots are even worse than warfarin.
An ultrasound showed now issues with my bladder or kidneys, but I do not understand why I was bleeding.
Guess that this just shows the importance of regular checking of INR levels while on warfarin.
-- By fiona | Reply | (1) replies | Private Message me
July 31th
2008
10:47 PM
I am a 39 year-old man who has been on warfarin for just under three years. To date, there have been no adverse side-effects for me that have really jumped out as being due to the drug. I have noticed that my memory is not as sharp as I once remember it being (no pun intended). One thing most of the posters have to remember is that once you are over age 25 or so, then things really start to go on our bodies. I feel horrible for people suffering from side-effects, but don't forget, not only are our bodies starting to show signs of aging, but most of use have gone through a major illness (which stresses the body) that forced us to be on warfarin in the first place. My illness was a DVT, which I thought was a leg cramp, that became a full-blown PE which almost killed me! I am surprised and thrilled that I haven't had the same side effects as many of the posters here. Don't forget to look at some of the positive things people have written too.
-- By coarepard | Reply | Private Message me
July 31th
2008
3:57 PM
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????????????
-- By katmarie468 | Reply | (2) replies | Private Message me
July 3th
2008
7:30 AM
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!
-- By sigmachideltachick | Reply | (6) replies | Private Message me
June 29th
2008
12:39 AM
Dealing leg pain and swelling fpr over 6 months - having 2 DVT test and 3 MRI's they finally found that I did have a DVT in my left leg and now I am taking Warfarin as of May 30th 2008. I now have severe joint pain, sore skin/sensitivity, my vision is going I can hardly read anything all of a sudden, so exhausted, sleeplessness - even after taking an ambien and getting some sleep, I can take a shower dry my hair and I am ready to go back and lay down because I am so tired. the doctor says thin blood does not carry oxygen as well so this is why I am tired. I am not anemic as I just had that checked. I can feel my muscles getting weaker. From reading what everyone else says it must be this drug, but I don't think I could live without it since my clot is so massive. I feel like my life will end soon I am getting weaker by the day...is this just my imagination? I know I am depressed but I do think all of the symptoms I am having is from the warfarin(besides the pain from the DVT which is still very painful)
-- By jjatl | Reply | (2) replies | Private Message me
June 28th
2008
10:18 PM
I've been an extremely healthy and active individual all my life until I injured my back at work recently. I'm 36 years old and had back surgery in February 2008. I subsequently developed a severe DVT in my right leg which then turned into bilateral PE's. I've been on Warfarin since April 2008 and continue to feel extremely lightheaded, dizzy, and very weak. My blood pressure and heart rate have steadily climbed. The symptoms have been passed off as factors of the PE's, but I have been off of Warfarin for a couple short periods due to additional procedures and have felt better. My doctors say that my symptoms are not due to Warfarin and I've been thinking that I'm dying from something else as they run test after test with no real results. I wish I could find out if Warfarin is truly to blame. I thought maybe I was going crazy about also having difficulty concentrating and remembering simple things. I can't deal with living like this forever.
-- By findsomething | Reply | Private Message me
June 23th
2008
2:04 PM
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..
-- By lisaspillowtree | Reply | (1) replies | Private Message me
June 17th
2008
3:29 AM
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
-- By judyems | Reply | Private Message me
June 13th
2008
8:18 AM
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; ******
April 12th
2008
10:52 PM
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.
-- By pacheco31 | Reply | Private Message me
March 31th
2008
1:26 AM
Natto Kinase is an alternative to Warfarin and I am now using it. I have had stomach upset and gas with Warfarin and do not trust most doctors anymore. I went to five doctors with pain and swelling in my left lower leg, and shortness of breath. I put the diagnosis in their pockets. I stated: "I'm on estrogen, couldn't this be a DVT?" Oh no, this is normal we women age. The US Health Care system is nothing more than about money. It is money-driven, not care-driven. The ultrasound was cheaper than the idiots I went to. I do not plan on staying on Warfarin and am delighted the Japanese can offer an alternative!!
-- By midas1 | Reply | Private Message me
February 11th
2008
5:14 PM
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
-- By tracy3577 | Reply | (1) replies | Private Message me
December 13th
2007
11:02 PM
I'm a 42 year old woman, been on Coumadin on and off for almost 8 yrs due to 2 DVT's after childbirth in February, 2000. The scar tissue has completely blocked the main vain in my left leg and am on Coumadin to prevent new clots from forming. Symptoms from the beginning have been: memory problems, concentration problems, fatigue, low libido, every muscle in my body hurts to the touch, my skin looks like I have smoker's skin (I don't smoke), anxiety, rash around my ankles, I have almost no patience on most days and continual hair loss. They changed my dosage 5 months ago to 10mg one day & 7.5mg the next 2 days. Since, then symptoms have gotten almost unbearable at times. My current Dr. claims the Coumadin isn't causing any of it and won't listen. 5 yrs. ago, during my second pregnancy, I was on heparin shots twice a day instead of theoumadin and I felt incredible. Why is it that when there are so many people that have problems with this medicine, nobody will listen and come up with a solution C?
-- By chrissi | Reply | (2) replies | Private Message me
October 29th
2007
3:18 PM
Can anyone help please? My partner, whom I love dearly has been taking warfarin for approx 7 months following a DVT in his right calf. He is tired all the time b ut more recently has been having trouble gaining and maintining an erection. This is causing him great distress. Has anyone else suffered this and does anyone know if this is a side effect of this drug?
Masterepiece
-- By masterpiece | Reply | Private Message me
October 6th
2007
5:55 AM
developed a dvt after a flight in june. very fit person running several miles a day. now in oct my dvt has not gone away and im developing more clots despite being on 7.5mg of warfarin a day. i have been told that i have to take it indefinately. no side effects to start with but did have blurring of vision recently that was investigated but nothing found. now my leg is itchy and im developing blood blisters on my hand for no reason. more worried about these blisters than anything. has anyone had anything like this?
-- By nessie | Reply | (2) replies | Private Message me
September 19th
2007
6:29 PM
I've been on warfarin since april due to a torn calf muscle injury that developed a DVT. Yes, I have seen several side effects, but after getting off the drug now for two weeks, I find out today at my yearly physical that I now have diabetes? I am 57 years old and hopefully can control this with diet only. Has anyone else heard of diabetes as a possible side effect?
-- By hanks | Reply | Private Message me
August 22th
2007
3:53 PM
Have been on COUMADIN / Warfarin since 2001 for a diagnosed "LOW FUNCTIONAL S PROTEIN / DEFIENCY". Since then as a result, have been hospitalized for Pulmonary Embolism of the lung on three occasions not including a DVT in left deep vein (uptake vein to heart).
Presently take 12 mg/day.
July 3th
2007
8:03 PM
I am a 47 year old female. I had superficial blood clots in my left leg in Dec 05 and Nov 06. Developed a DVT in left leg and a superficial clot in right leg in June 07. Now taking 9 mg of warfarin (coumadin) a day. Suffering from extreme fatigue, heavy periods and I just discovered the hard way that warfarin makes you sensitive to the sun (got a severe sunburn on my face, forearms, hands and the top of my head, all places that I do not normally burn). Called the pharmacist and she said sun sensitivity is not a side effect. Went to several websites before I finally it upon one that did say that sun sensitivity is a side effect. My doctor did not tell me this and it is not a warning on the prescription label. Please be careful in the sun. Also, if you are a cranberry lover, I found several websites that said no cranberries in any form, juice, dried, herbal supplements, etc.
-- By mimosa | Reply | Private Message me
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 25th
2007
1:52 PM
Hot hands seem almost arthritic. I'm 36M post PE year ago. Had to wear padded gloves at work to drive. Cant workout 9weights /bike ride0 without padded gloves. Knees get hot and sore after long walks. Can't practice my guitar as long as i used to without pain for 2 days.Worst part CANT TAKE IBUPROFEN FOR SORE JOINTS ARRGGG. This is the only side effect that is really annoying me right now and it wasnt even listed as such. Glad everyone else is feeling it to .
-- By tashnsean | Reply | (1) replies | Private Message me
May 13th
2007
12:45 PM
I've been on Warfarin since Dec 2006. I'm a big guy, 6'2 265. They have me on 12 mg daily to keep my INR in check. Only recently did i get to the one month period between INR tests. I'm 36 years old, likely 40 lbs overweight, formerly very active- played ice hoceky, competitive swimming, baseball, etc. Anyway foot surgery in Nov 2006 caused me to be in a cast which led to extensive DVT's which led to an almost fatal very significant PE in my right lung. Lost 15 lbs on the hospital which I since gained back...think that was just portion control. anyway having a tough time realizing if the warfarin is actually giving me side-effects. Just walking for 45 minutes recently left my whole body sore. Sleep isn't what it used to be and my overall "focus" is not there. Also find my self forgetting things that I've always been quite sharp with. I'm scheduled to be off the coumadin in the coming months if my vascular surgeon says the DVT's are all healed. By the way, when I had the PE I never had real difficulty breathing. The doctors said I had very good lung capacity and that helped me. Anyway, just like some of the other posts I read- Can't wait to get back to being ME !
-- By eddiebrooklyn | Reply | Private Message me
November 8th
2006
4:01 PM
Hi,
This is the second time I've been on warfarin in two years (prescribed following a DVT in both cases). I've noticed that each time I've been on it, even when I'm in the zone I'm supposed to be in, I feel tired. Even when I sleep well, I feel like my eyes are dry and bloodshot and my face feels like it is sort of flushed or red all the time. I'm very fit and healthy but it doesn't seem like these side effects are really mentioned anywhere. When I tell my doc, he says those are not really common side effects. I'd love to hear from anyone else who has experienced something similar.
-- By cgerard | Reply | Private Message me
July 7th
2006
10:33 AM
I really do not have any side effects from Warafarin. I have experienced hair loss with Depo Provara, which is why I developed DVT and have to take warafarin in the first place. My problem is I might be pregnant. Any one know what affects this can have on a zygote, embryo, or fetus?
-- By jc78648 | Reply | Private Message me
November 12th
2008
2:17 AM
I suffered a DVT in 2006 followed by a venous cranial clot in March 2008. I have been on Coumadin since March. My experience has not been too bad, I have gained about seven pounds. The positive side effect is better erections. (Must be the thinner blood) I am a 52 yr old male.
-- By cp9800 | Reply | Private Message me