AF Association
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Fed up with leg pains with warfarin

Has anyone given themselves a break from warfarin? I have been on it for 2 years with no issues but am now suffering from pains in the legs. I am a rambler but have had to give up walking and my doctor just told me to take co-codamol. As I am also a bridge player I cannot cope with my brain being in a state of fog because of the co-codamol so am thinking of giving up the warfarin for a while to see if the pains go away. Any advice out there?

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I am not aware of a link between Warfarin and leg pain.

You should not change any medication without medical advice from your doctor.

Pete

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Two yrs in seems unlikely to be Warfarin

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If you give up warfarin without medical advice and then suffer a stroke your bridge playing could be even more affected.

Could you try a different painkiller? Has your GP properly investigated your leg pains?

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Thanks Yatsura. No, my leg pains have not been investigated and my preferred painkiller is neurofen, unfortunately a no no with warfarin. Judeth

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I had leg pains ( calf pain ) after starting Flecainide after being on Lipitor for over a decade with no problems.

Best to have a word with your GP about other drugs that could be reacting with it as its know to do this if taken with statins.

Personally i would not take pain killers for a cause and effect if changing to another drug may stop it.

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Hi Judeth. The other posts are correct. Don't stop the coumadin with out your doctors being involved. There is not a lot of info re warfarin and leg pain and many sources incl docs believe there is no connection. I have had afib since 2011 and have been on coumadin for years (am almost 74). I also have restless leg syndrome. Long story short. I have a wondeful Electrophysiologist and after much trial and error with several different physicians, I believed warfarin was making my rls worse. I have self-tested at home weekly so I could keep my INR's tightly controlled. My EP believes the warfarin is not helping the rls so in January of this year I had the Watchman procedure done to enable me to wean off anticoagulants. After I've been off we will see if leg pain is helped. I had other reasons to get off also and I am doing fine so far and am very happy to get anticoagulants out of my life. Coumadin has been around for years, and has helped many people, including me, but it can be a harsh drug. Talk to an Electrophysiologist about your concerns. New info on coumadin is becoming available and some docs still think of it as the goldstandard for clot prevention. If it were me I would skip asking a GP or reg cardiologist my question and go straigh o the EP. irina1975

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What’s the watchman procedure? I hate taking Warfarin I think it causes dry skin and thins skin

My hands are like those of an 80 year old and I am 61

My hair is dry my skin in general is very dry and all since been I’m Warfarin but I couldn’t live with the threat of a stroke after a heart attack from a clot when they had taken me off it

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Hi Lainie. Part of the heart's anatomy is a small appendage just off the left atrium with a small opening into the atrium. It's called the Left Atrial Appendage (LAA) and research has shown that a high percentage of afib-related clots originate here. (There is also a right appendage I mention for accuracy's sake but we are not concerned with this now.) By inserting a small device (the Watchman device) to help seal off this small opening patients can stop their coumadin because the risk of clots is greatly lowered. The procedure is done using cardiac catheters so is considered a 'closed procedure' (meaning no surgical incision is needed to access the heart.) If I've made it seem simple I want to emphasize no surgery/procedures are ever just simple and should not be taken lightly. This procedure is not for everyone but it doesn't hurt to investigate. I would begin by asking my doctor about it. Not all doctors are fans or even up on the whole procedure as the Watchman procedure hasn't been around that long. Be aware of this possible bias and if you're really interested and hear "No!" too fast from one doc, it might be worth your while to get another opinion. Just a thought. Good luck with your research. irina1975

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Are you outside the uk

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Hi Lainie, Yes I live in Atlanta Georgia USA.Did you have specific questions? I'm happy to help if I can. One thing that might be of interest is that I understand that the need for this procedure must be approved in the UK by a committee. (I might not be correct in this) The procedure has to be approved here also but it is done in a different way. Each doctor who performs any procedure must document reasons he feels a procedure or surgery is necessary and it is up to the insurance company to decide if they will reimburse or not. Doctors here are very familiar with various insurance guidelines so they are reasonably sure before scheduling whether or not a patient meets his/her insurance company's criteria. When an appt is made with a new doctor the office will ask what a patient's insurance company and plan is. Each year it is up to a doctor's office to negotiate a new contract. There are quite a few good solid insurance companies that people know they are not going to have problems with. For example I have had the same insurance company and plan for supplemental insurance since I went on medicare . I pay a rate that is probably a little higher than other companies and plans available. But I want to be sure I will have the coverage I need when I need it. Also, I have the privilege of choosing my doctors, changing them or not using them. Not everyone is able to do this due to cost and deductibles-especially middle income families with children. It's not an equitable system or fair to everyone. I have out of pocket expenses as we all do here but because of my medical history I would rather do without something else and know I can choose my doctors and get the care I need. If this is more than you wanted to know re US healthcare, I understand. LOL Let me know if there is anything you DO want to know. Take care. irina1975

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Interesting

We drove through Georgia a couple of years ago on a 6 week American road trip for my 60th we love America coming to Florida in May for some sunshine after the cold British winter ha ha

We started in Vegas and finished in New York but we managed Tombstone Arizona,Texas, New Orleans, Nashville Tennessee , Florida , Atlantic City , New Jersey , also squeezed in Niagra falls ha ha amazing time drove 3500 miles loved it

Regards

Elaine

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Yes you are correct about the UK- there are special committees to discuss watchman use- I think they are approved more easily now that initial problems have been dealt with but are still only used here if other aC isn't suitable

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Hi Rosy. You're right. We have to be approved by our insurance companies to be sure they will reimburse the docs. But each doc does this individually for potential patients thru documentation in his notes. Also before I started coumadin I did try Pradaxa which caused major G. I. upsets. So that helped me. It was a bit of a 'skirmish' with my insurance co but I prevailed.!!!

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Nothing is listed for leg pain in the side effect for warfarin. However you could switch to one of the new anticoagulants and see if that helps.

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Hi Judeth. It's me again- irina1975. I reread your post and something occurred to me I wanted to share. This is just my own opinion re why I believe there could be a connection between warfarin and leg pain. Of course no one wants a stroke, so we take anticoagulants. Bu the other side of the coin re coumadin is bleeding. Even though our INRs look good, my EP says they are only 'a snapshot in time'. So who knows what INRs are between testing we are not aware of. I believe it's possible to have little mini 'under the radar' bleeding from the coumadin. Small leaks-maybe GI related that don't cause problems and so are not diagnosed. But over time these could possibly cause our Ferritin levels to lower. And low Ferritin levels can be an indication of rls. Since most of the time (here in the US) if hemoglobin and hematocrit numbers are fine on our labwork no further investigation is done. So I've had to ask that my ferritin levels be checked. And sure enough they were low normal. There is starting to be info avail re this aspect of coumadin therapy though not a lot . Consequently leg pains. Not all docs agree re this but my EP did. All this is really my own thoughts but I believe it's possible and I'm happy to have an EP that listens to me even though I am sometimes 'off the wall'with my theories. Take care. irina1975 PS. One might say some of the newer anticoagulants may circumvent this problem as their action is different from coumadin and not as harsh. They may. But for me they have not been around long enough to really get the whole picture so I don't trust their short length of time they have been in use. We all have to make our own decisions. Mine was to get off all anticoagulants. irina1975

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Thanks Irina. I have never heard of ferritin but after googling it I certainly have the symptoms of a low level: i.e. lethargy, tiredness and headaches as well as the leg pains. I am just recovering from a severe bout of diarrhoea after a holiday in Egypt so that would fit in too. I don't really have an EP and just have my INR levels checked every 3 months at the local chemist but will ask my doctor for a blood test. Can't imagine that he will have heard of the Watchman procedure! Judeth

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Hi Judeth. I try not to respond in ways that refute a doctor's treatment or advice. But here goes. I really believe 3 months between checking INR levels is much too long. This means you have 90 days of your INR level bouncing around with no one knowing what your numbers are and what problems the coumadin levels might be causing. Can you ask your doc about it? This is scary to me. And when you talk with your doc, if it were me I would ask for a Ferritin level lab test. Try not to be put off about this. Ferritin is not the same as your hemoglobin and hematocrit numbers (H & H). They can be perfectly normal while your ferritin can be low. And I would suggest reading up on ferritin levels and rls. You may be told that yours is in the normal range but this doesn't always seem to be good enough for those of us with rls. Read some of the posts here on the ferritin issue. BTW one phrase I never accept from a caregiver after being told labwork results is. "Your labwork is normal." I want specific numbers _which I keep track of over time to see if I'm drifting too high or too low. I have a right to this info and so do you. A bit of humor: "Normal is a setting on a washing machine." Good luck with your ferritin research. Take care. irina1975

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Hi Judeth...if I may butt in here the Watchman device has been well public ised in UK but then again we can't expect our GP s to be aware of every new device for every ailment.

Irina s advice to have your ferritin levels checked is sound. I was found to have a low level so am currently on iron therapy. I have been taking warfarin for about 15 years and endoscopy showed bleed in stomach....very slow seepage from blood vessels..assisted by warfarin.

The symptoms you describe sound like mine before iron deficiency was diagnosed.

Sandra

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Hi Sandra. I couldn't have said it better (or more succinctly). I know I ramble trying to get everything said. Thanks. Take care. irina1975

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I haven't read all the other posts as they are a bit long.........but I have been taking Warfarin since 2012. I walk a lot, usually about 5 miles at least 3 times a week. I have never suffered from leg pain......one of the reasons why I refuse to take statins (my cholesterol tends to be a obstinate and always around 5.........but my query here is, I am sure I read that you weren't supposed to take Co-Codamol for pain relief, when you are on Warfarin??

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I think co-codamol is ok, especially as my doctor recommended it. Anything with aspirin or ibroprofen is banned, unfortunately as the latter is an anti inflammatory.

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Co codamol is ok to take with warfarin. I have had a prescription for quite some time to take as and when. I was also given this on ward following an ablation

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Thanks for that info!

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