I was diagnosed with bi lateral PE's after being taken ill on 12thJune 2008 I have now been on warfarin since 19th June (3 months) I have found that I am feeling more and more tired and I am now experiencing shoulder and knee pain has anybody else had a similar experience? the other thing I have found is that concentration is more difficult than before i took warfarin.
Very interested to read you experience thank you. I have exactly the same symptoms. Have been taking the wretched warfarin since middle of June with blood tests every two weeks. My INR level seems to fluctuate every time. It feels that it is just a computer printout that regulates my intake as I have no other contact with NHS or GP.
HI THERE HAVE HAD AN HEART PROBLEM IN DECEMBER 2008 IN MARCH 2009 AFTER HOURS OF INVESTIGATION HAVE BEEN DIAGNOSED AS HAVING AND IRREGULAR HEART RHYTHM.
I HAVE BEEN TAKING WARFARIN FOR SIX WEEKS, SLOWLY BUILDING UP THE DOSAGE TO 9 MGS.
I HAVE NOTICED VERY UNCOMFORTABLE KNEE AND SHOULDER JOINT PAIN WHICH IS WAKING ME UP EVERY NIGHT.
RESULTING IN INTERRUPTED SLEEP WHICH UNTIL I READ YOUR COMMENTS BELIEVED THIS WAS CAUSING MY GENERAL TIREDNESS.
I HAVE BEEN INFORMED THAT OTHER TREATMENT WILL BE NECESSARY LONG TERM, HOWEVER IF ANYONE HAS TIPS ON HOW WARFARIN CAN REACT I WOULD BE MOST GRATEFUL.
MICHAEL
I have been taking Warfarin for over 20 years after having a heart valve replaced and I am now in my 40's.
I had to give up contact sports, as on a couple of occassions whilst playing sport I have recieved a dead leg and a dead arm which internally bleed and caused alot of pain and bruising my whole leg was bruised and my arm from shoulder to hand was black from bruising, very painfull. I now respect what warferin can do to the body and that it needs to be regulated. I am on 14mg per day. Side effects ? To be honest I dont seem to have any apart from feeling tired but that could be my life style. I enjoy life, I do drink, I Don't smoke, and I take each day as it comes.
Just started warfarin a couple of months ago because of AF. I experience muscle cramps and joint pain that i didn't before warfarin. I mentioned it to the warfarin practitioner and she more or less dismissed the idea that it was caused by the warfarin. She suggested it could be down to statins, which i have been taking since 2005 after a heart bypass, why would that all of a sudden affect my joints? Now there is a alternative to warfarin I will be asking my doctor if i can go on to it, I know they won't be happy about the extra costs but as I understand it this will be compensated by the fact i will not have to keep being tested every few weeks. So Glad I wasn't immagining it.
Hi, I was diagnosed with a PE last July, and since then have taken warfarin. I was not admitted to hospital, and have since been back and forth to hospital as I feel worst now than when I was diagnosed! I've seen 4 different doctors, all telling me something different?? Anyone else had general feelings of poor health after months of taking this drug?
I’m 78 and apart from some occasional pain in my left hip from a long standing injury my other joints were pretty good and I could easily walk six or eight miles and over the local hills.
In May of last year I my aortic valve replaced and this caused Atrial Fibrillation. That led to me being prescribed the world’s worst two drugs Amiodarone and Warfarin.
I began to get pain in my hips and knees when laying in bed and stiffness when getting up after sitting.
I was doing cardio rehab and up to December was complaining that it was not taxing enough. Then the joint pain became increasingly bad and I also started to get back pain.
I did not put it down to Warfarin as I had been told that the only problem from it is bleeding. The packet insert did not have many side effects listed.
In September my atrial fibrillation was cured by Cardioversion. The surgeon said that after six months in sinus rhythm I could stop Amiodarone and Warfarin. However the Cardiology consultant disagreed about stopping the Warfarin.
My average dosage was increased over a period of time from 4.5mg to 7.8 mg as evidently other drugs interfered with warfarin. As the dosage went up my joint pain increased.
An orthopaedic consultant agreed that Warfarin can cause bleeding in the joints. He said that my knees on an X-Ray looked very good for my age and that my hip movement was quite good and I do not need a hip replacement. He put the pain down to inflation of the joints. Due to a history of ulcers I cannot take the usual anti inflammatory drugs and painkillers do not help.
My GP said that any such bleeding would cause great pain and greatly swollen joints and be a medical emergency. I feel that it can cause lesser bleeding enough to cause joint pain. I stopped taking Warfarin ten days ago and started taking aspirin again. There are many natural substances that can reduce inflammation in joints and I am taking Turmeric, Green Tea, Ginger. oily fish, blueberries
and broccoli. Hopefully in a few weeks I will feel some improvement.
To Pim.
"Now there is a alternative to warfarin I will be asking my doctor if i can go on to it, I know they won't be happy about the extra costs but as I understand it this will be compensated by the fact i will not have to keep being tested every few weeks. So Glad I wasn't immagining it"
Warfarin costs pennies and your testing about £10 a time whereas the new meds cost £3 a day.
Does anyone know if after stopping Warfarin that the joint pains improves and goes away completely.
I shall let you know in a week or so Derek, I have had SO much joint and muscle pain since starting on Warfarin.. I take a huge dose - 18-20mg per DAY - am on it because I am having a heart ablation for atrial fibrillation problem but my doc has agreed that I come off it for a period to see if my aches and pains go away.. he knows that this 'symptom' is not listed anywhere but also said that all folks are different - my pharmacist also said this to me last night and thought it was a good idea to come off and see what happens... if I wasn't ablation pending I would not be on it, so risk stroke not a priority for me at the moment (just saying this before someone points out the obvious) - will let you know what happens!
Hi Susan,
I stopped taking warfarin on August 6th.and apart from my left hip that has had worsening arthritis recently my other joint pains have basically gone.
When I told my GP he said that I was the third patient that week who had stopped taking it for various reasons.
The cardiologist was unhappy about it. He agreed in theory that with my atrial fibrillation having been cured by cardioversion that aspirin is enough but added if it comes back for just a second a clot could form.
He was willing to give me one of the new anti coagulants but each was contra indicated after tissue aortic valve replacement. Reading BNF they all have nasty side effects as well.
When are you having your ablation?
Hi Derek, thanks for swift response - it was good to read. I have found over the years that cardiologists often have very different ideas re warfarin, I was told years ago by one (only 40 something at the time) that once you're on it you're on it for life! I was, at that age, horrified to hear that.. you must know the CHADS score that is used for measure risk of stroke, I only score 1 for being female hence why I don't HAVE to be on warfarin as a rule.. I have no other risk factors to push my score up.
My ablation was supposed to be early August, went in to the Brompton and an hour before the op they said that my INR was far too high it was a out of the blue 4.5! 3 months on I am still not in the 2-3 range despite the high dosage of warfarin I think I have hit 2.5 maybe 3 times, but last 3 readings I have been well over 3 which means they wont do the ablation any time soon.. so by coming off it for a few weeks won't make any difference to when I actually have the op and I am in so much discomfort with these aches and pains, to me, it has to be done - I am a contender for the other types of coagulants but ... the Brompton do not like patients to be on it just prior to the op. so am stuck between a rock and a hard place at the moment - I hope that this time week my aches and pains would have disappeared, if they haven't then we will be thinking again.
Hi Susan,
CHADS score always reminds me of the Chad graffiti during the war.
The graffito consisted of a cartoon of a small, round head with a long nose poking over the top of a wall, with a complaint about shortages like "Wot no bananas" written underneath.
Now it is our cardiologists saying, Wot no Warfarin to patients.
I know quite a few people who have been on it long term from the 80's seemingly with no ill effects. One was told by her consultant at St Helier hospital that no patient of his on Warfarin had ever contracted cancer. She evidently believed it enough to continue smoking after her heart surgery. It is also said that aspirin helps prevent some cancers.
I hope it all works out for you soon.
I have read with interst the various comments above and find myself in a similar situation.
I have been taken warfrin since 2007 following a aortic valve replacment. Over this period of time I have had various issues.
1 Hair loss, somthing I did expect and not sure if it is an age thing.
2 Always cold, even during summer months.
3 Cramps in feet when in bed, feet very very cold.
4 for the past few months I have suffered from exteme joint pain, mainly shoulders, elbows, wrist and neck area,
5 Extreme depression, stress and tiredness, and now on 150mg antidepressant per day.
QUESTION; I read that this might caused by internal bleeding, if this was the case would I not see blood in my stools or urine ?
Any other input or advise would most welcome.
Thank you.
Is this subject still active, or is it advised I try else where ?
Ask your question or make your comment and you will probably get a reply.
Thought I had asked the question below...
Sorry I missed your earlier post..
Unfortunately I have been back on Warfarin since December 13th. I needed to have a colonoscopy and either dehydration caused by the laxative or else the sedative used caused my heart rate and BP to drop alarmingly. A consequence of that was that my AF started again actually worse than originally. I need to be on warfarin for 8/9 weeks before they will do a cardioversion.
My joint pain in weight bearing joints is already back again but I don't get your other symptoms. As we are have had valve replacements the new anticoagulant drugs are contra indicated for us. There is an older drug called Sinthrome (Acenocoumarol) that has been suggested to me that may have lesser side effects but will probably turn my urine orange:-) I will ask my GP about it. The practice nurse and a locum had not heard of it. Coldness seems to be the most common side effect. One person I know wears an overcoat all year.
on warfarin since August 2013 due to blood clot in the head (sinus venus thrombosis). I am going through severe shoulder, arm and finger pain and stiffness through one hip. doctors don't connect it to warfarin although my drug fact sheets did warn of joint pain.
glad to know there are other people out there having joint pain and maybe it is related to drug. going off it is not an option for me at this time.
yes I do get very cold feet, even though the rest of me will be warm, have noticed extra hair loss but am not tired at all. in fact lucky if I sleep two hours in a night some of that due to the shoulder joint pain.
am trying acupuncture right now for shoulder while waiting for physiotherapy. it's not making it worse but is still a major concern. they are treating as frozen shoulder, I am now going to go back to neurologist and haemotologist with regards to side effect possibly from the warfarin.
I am a 58 professor at the Federal University of Rio de Janeiro and had a PE after a DVT in my left femural vein last Sept 30, 2013. Everything started one year before with a symetrical plantar pain in the feet, then achieving both calves, and a permanent state of mental fatigue. Earlier 2013 i had also had thrombophlebytis in my right arm. From Oct on i am suffering from joint aches in shoulders and hips that i had not before starting on Warfarin.
I had several appointments with medical doctors from my University Hospital: haematologists, rheumatologists, neurologist, pneumologist, however no one is providing a scientific dialogue among especiallists. I did a number of TC, PET, MRI and lots of blood exams; no explanation so far. Doctors deny my allegations about the possible side effect of warfarin on the joints. It is good to see many reports on the subject from colleagues in this forum. I am considering substituting Xarelto for Warfaring, as is the current trend for DVT patients. Does anyone had such an experience?