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Nurse
Dalton, GA
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Susan92 wrote: Hi,I have been on warfarin for eighteen years as I have a genetic blood disorder Factor V Leiden Mutation Activated Protein C Resistance.This has given me four PEs, one major uterine haemmorhage and various other problems when I have needed operations.After suffering a severe fall and damaging the peroneal nerve in my leg I had to have a hip replacement and lo and behold just to add to my problems the surgeon stretched my sciatic nerve causing irreperable damage. I was very interested to find this site and read the posts as I have always felt that warfarin although keeping me alive was damaging my body. I have suffered tiredness in the past but in this last year I have become increasingly stiff in my shoulders,hips and fingers.Doctors look at me as if Ihave two heads when I point out that I think it is side effects from the warfarin. I am now on steroids for polymyalgia, feel like I am rattling with all the tablets I am taking. I would really like to what the general consensus is on the drug Cymbalta used with warfarin as this is another goody that the doctor feels would help with the nerve pain in my leg and foot.I have had the tablets for over a month but have not used them as they are anti-depressants and I wonder if my doctor is trying to tell me something.I think she believes my joint pain is all in my head? Well thanks for reading this post and I wish everyone well I totally agree that the joint pain is from the Coumadin. My mother has the same issues with it (on two different occassions). Then, I personally took a med called Accutane that permanently destroyed my joints. Doctors look at me the same way; however, now all of this mess with Accutane is finally coming out. I suggest "google-ing" "Coumadin and joint pain." I promise you will read multiple stories like yours. Also, there's a good web site called askapatient.com that will give you the good and bad of meds from REAL patients. Check it out, and God bless you as you struggle through this.=)
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Brittany
Wadsworth, OH
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I had surgery on December 21, 2011 to fix a avulsion fracture of my 5th metatarsal that had to have the tendon reattached to the bone, as well as the placed anchors in my ligaments of my ankle to fix the torn ligaments. At my post-op appointment I had mentioned that I felt like I had a severe charlie horse in my left calf. After having an ultrasound done, there were in fact 2 DVT's in my leg and I was admitted into the hospital and placed on a heparin drip and was given different levels of coumadin during the 3 days I was in house. When I was released I was given lovenox injections to give myself the next 4 days 2 times a day and a 2.5mg coumadin once daily. My first INR level was high at 2.9, but once off the lovenox my INR dropped to a 1.9, and my coumadin was upped to a 5mg dosage. And I have been steady at 2.3.
With this I have expierenced pain in both my wrists and fingers, elbows, and shoulders. Seeing as I am on crutches I don't know to blame it on that alone or if the coumadin has any involvement in the swelling/pain I am feeling in my joints. I have also noticed the pain in my toes and my feet feel very tight when moving. Understandably, I expected this in my left foot since I did have 2 procedures done one it prior to being diagnosed with DVT 2 weeks postop, but just an all over achyness I am not sure if this is from the coumadin or not.
I also feel very worn out, I sleep many hours a night, and then end up falling asleep for 2 more hours in the afternoon. I don't like feeling this way and really hope its because of this medicine and when I get off it I will feel better again. It is very frustrating.
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Beverly
Anaheim, CA
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Hello Brittany...what you describe sounds very much like what I felt, especially in the first month or so. Increasing joint pain, tiredness, lack of energy. For me, the joint pain has stayed, the ret decreased over the six months. I'm due to go off the meds, but have numerous long flights coming up, so I'm staying on it until the traveling is one. I am SO hoping for the knees to feel better when I'm done. Hang in there... Still better than the alternative!
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Massachusetts DVT
Scituate, MA
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Louise, I have Factor V Leiden also. Following a ski tumble I had my first DVT in my right calf. I was put on generic warfarin and had wild hip pain. I could barely walk. I was switched to Coumedin and the pain resolved and I was able to walk ok, discontinuing the Coumedin after a few months. Years later I had another DVT and was put on Coumedin immediately (and probably for the rest of my life). It took a few months, but the hip pain has returned and I walk like Walter Brennan. There are alternatives to Coumedin and warfarin, but they are only available in Canada and Europe. My primary care physician won't touch any alternative like that until it is accepted in this country. Coumedin has terrible side effects. You have correctly identified the problem. The solution is for the FDA to allow us a drug that will address the DVT issue and not cause the side effects. Lobby the FDA. Louise wrote: I have Factor 5 Leiden--a genetic disorder. My first clot came after the birth of my first son. Since then I have had 13 DVT's all in the left leg, and 2 pulmonary emboli. I have to keep my INR at 3.5 - 4.0. I've been on Coumadin for 40 yrs now and am experiencing Severe hip pain!Both hips. I've also had painful burning skin. Does anyone think it's related to the coumadin? Presently I'm taking 6 T'3s a day which I worry about liver problems--Any suggestions?
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Ally
Fort Lauderdale, FL
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coumadin/warfarin is rat poison and known to cause severe pain among other negative effects. My mom is in severe pain after using coumadin. she will try nattokinase and phenyl butyrate to thin the blood and inhibit platelet aggregation instead.
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Stan
Rensselaer, NY
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Thanks to everyone submitting their experiences on this site. I have been on Warfarin for almost 2 years to dissolve a clot in the heart. Gradually, since last fall I have experienced increased hip pain and leg pain. I suspected that Warfarin was the cause, now I am certain, after reading all the comments. Does anyone know of safe available alternatives? I have a doctors appointment coming up and I will ask about getting off this rat poisin. Thanks for your comments Louise! Massachusetts DVT wrote: Louise, I have Factor V Leiden also. Following a ski tumble I had my first DVT in my right calf. I was put on generic warfarin and had wild hip pain. I could barely walk. I was switched to Coumedin and the pain resolved and I was able to walk ok, discontinuing the Coumedin after a few months. Years later I had another DVT and was put on Coumedin immediately (and probably for the rest of my life). It took a few months, but the hip pain has returned and I walk like Walter Brennan. There are alternatives to Coumedin and warfarin, but they are only available in Canada and Europe. My primary care physician won't touch any alternative like that until it is accepted in this country. Coumedin has terrible side effects. You have correctly identified the problem. The solution is for the FDA to allow us a drug that will address the DVT issue and not cause the side effects. Lobby the FDA. <quoted text>
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Beverly
Anaheim, CA
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Been off coumadin now for about three weeks. Have not noticed any lessening of the joint pain so far, but I'm still hopeful. Hang in there, all of you!
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Ann
Savanna-la-mar, Jamaica
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I recently did a pelvic surgery and later developed a clot in the left calf. I was hospitalised and went through a treatment of Warfarin and Clexane and released after five days. In the last week I have developed pain in the toes, ankle, calf, knee and thigh. They entire leg is sensitive to touching certain surfaces and is very tender at times. I am worried out of this world. Worried that maybe some very terrible has gone wrong. Is this normal or is something else wrong with me? Help me, please.
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Nurse
Summerville, GA
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Ann wrote: I recently did a pelvic surgery and later developed a clot in the left calf. I was hospitalised and went through a treatment of Warfarin and Clexane and released after five days. In the last week I have developed pain in the toes, ankle, calf, knee and thigh. They entire leg is sensitive to touching certain surfaces and is very tender at times. I am worried out of this world. Worried that maybe some very terrible has gone wrong. Is this normal or is something else wrong with me? Help me, please. I sure hope you went back to the hospital. It sounds as though you have another clot. Did the docs prescribe Coumadin for home use? One always has to take Coumadin for at least several months (6) after having a clot.
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connie
Hermitage, MO
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last year i had a blood clot in my left leg , it was red and swollen, the doctors put me on coumadin 5 mg, now my cholestrol is 334/ my good is 66. is it safe to take coumadin and lipitor together, please let me know thank you
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Michael
Yuba City, CA
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I am 43 years old and developed a DVT and bilateral PE about one month ago. I was put on Warfarin while in the hospital along with Lovenox. My blood tests read positive for Lupus Anticoagulant and Factor 5 Leiden. Since leaving the hospital I have developed joint pain in my knees, lower back, elbows, shoulders and wrists. I have tingling in the tips of my fingers and cramping in my calfs. I informed my doctor about the problems from the onset, and he said it had nothing to do with the coumadin. You don't have to be a Rhodes Scholar to recognize a relationship between the onset of the pain and the ingesting of the drug. I'm 43 and I move like and old man. Prior to all my health issues, I ran marathons and was a very active individual. There has to be some alternative to this drug. If anyone has experienced an alternative drug, and is actually taking it with a positive outcome, please let me know.
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Hmmmm
Summerville, GA
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Michael wrote: I am 43 years old and developed a DVT and bilateral PE about one month ago. I was put on Warfarin while in the hospital along with Lovenox. My blood tests read positive for Lupus Anticoagulant and Factor 5 Leiden. Since leaving the hospital I have developed joint pain in my knees, lower back, elbows, shoulders and wrists. I have tingling in the tips of my fingers and cramping in my calfs. I informed my doctor about the problems from the onset, and he said it had nothing to do with the coumadin. You don't have to be a Rhodes Scholar to recognize a relationship between the onset of the pain and the ingesting of the drug. I'm 43 and I move like and old man. Prior to all my health issues, I ran marathons and was a very active individual. There has to be some alternative to this drug. If anyone has experienced an alternative drug, and is actually taking it with a positive outcome, please let me know. Are you saying you tested positive for Lupus at the same time you had to go on Coumadin? If so, doctors would guess that to be the cause. I'm with you, though; If the pain began after or at the time of Coumadin, it has to be the medicine. I would get a second opinion. That never hurts. It's a catch 22 because you definitely can't live with the clots. They will get you for sure. Try to find the lowest therapeutic dose, and take it for the prescribed amount of time. There are other alternatives. Ask about injections at home.
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FiFi
Rotherham, UK
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I thought I'd dislocated my big toe a couple of months ago, the pain was so bad. I've had to walk on the outside of my foot and managed to twist my knee because of it and the pain is getting worse by the day. Rest is not helping at all. My doc thinks it may be the start of arthritis but no connection to the warfarin has been suggested although I did wonder if it would have caused it. I've been on warfarin since July 2011.
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Dee
Port Orange, FL
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Been on Warfarin for about a month. About 2 weeks ago started to wake up stiff and sore, mostly hips and legs. It happens too when I've been in the car, even on short trips. The backs of my heels hurt when I walk, and my fingers in my right hand were stiff and sore most of the day yesterday! My shoulders have been sore on and off as well. I had multiple small PE's in my left lung and was hospitalized for alomost a week. I'm 37 and have Crohn's disease which my GI says can contribute to blood clots!! I'm now up to 5mg of warfarin and my INR is still not where it's supposed to be. When I left the hospital I was on 3mg and it has been increasing since then. I'm worried that the increase in the warfarin is causing the increase in these side effects!! I'm calling my Dr today, but I'm worried he is going to brush it off! I am not imagining this!!!!!!
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Beverly
Anaheim, CA
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Dee, you are not imagining it! The soreness and stiffness happenned to me too. I've been off warfarin for about 3 months--- sore joints are lessened, but not gone. Not sure if there's an alternative---this is not good, but better than clots!
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Dee
Port Orange, FL
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Thanks Bev, I called my Dr, and he denied any connection!! Plus, he said to take tylenol sparingly, as it could effect my INR!!
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Sue
Overland Park, KS
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I think my rat poison will only be temporary, long story but I am supposed to be off it by September of this year. I was first started on it in March. Anyway, I am having so much pain myself and especially in my feet, pain, plus burning on the tops of them. I just know all these strange symptoms are from warfarin, because I didn't have them before. Can't wait to get off it and wish that everyone here could get off it as well. There are natural blood thinners you know, ones that are healthy for you. Depending on the severity of your problem, some might check into those things. Also, replying to the one woman who said she snored loudly. I say, get checked for sleep apnea. Your Doctor is right, though he doesn't seem to have a clue, just calling it disrupted sleep, but I think you might have it, as snoring is a major symptom, plus fatigue and this disorder can cause many, many health problems as you are never really reaching the REM stage. I have used a machine since 2002, my husband said before that I snored like a Pit bull. LOL It can't hurt to be checked out for it, that's for sure. Blessings to everyone here.
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Annie UK
Abingdon, UK
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I have been on Warfarin for about 5 weeks now because of an irregular heart beat. I am on 3 mg. and my last INR test result was 2.3. I was told it should be between 2 and 3 so hopefully no increase needed. I have been experiencing joint pains, well knees and have difficulty walking. I look like an old lady. Now this is relative since I am technically speaking 'old' at 71, but my knees were pretty good before the Warfarin intake. If there is a healthy option to this drug then I would love to here about it.
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karin
Austin, TX
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I have been taking warfrin now for about 2 month and I do have Joint pain and Hair loss asking my Pharmasist He said Warfrin does not have any side effects! Boy is he wrong ! I have an appt. with my Dr. in 2 weeks will talk to her also "something has to give".I can't handle all this !
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