I have been on Warfarin since last October. My INR is not stable, I go in and out of range a lot. By choice, I wouldn’t take Warfarin, but I have not tolerated all of the NOAC’s.
I actually think that I am springing an intolerance to warfarin now, the timing is about right for me, 6 months.
Anyway, over the last 6 months, I have been getting a lot of hip, knees and back pain to the extent that it keeps me awake at night. I am wondering if it is the Warfarin causing it. I seem to remember it being mentioned on here but can’t find the post.
I don’t see me continuing long term on Warfarin, it is a pain. Support in my area is poor. GP won’t prescribe it, pharmacist will not issue if out of range etc.etc. Also I am getting the tell tale symptoms that I am not tolerating it which is severe nausea.
Anyone else suffered joint pains on Warfarin?
Val
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Mrsvemb
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Not in the last 16 years Val though old age has brought some pains.
Hiya Val,Well I have been on Warfarin for 11 years and no issues as you describe. Pain yes, shedloads, and at times intense pain but all due to Osteoarthritis in a range of joints. I have even had to stop/start warfarin to allow for a couple of medical procedures, CT Scan and knee replacement surgery and when I restarted it again no problems. That said I do tolerate it reasonable well. But then I self test and am highly supported by my GP Practice, so I can check on my INR anytime, any place, I bought my own device and NHS prescribes me test strips. AND THAT IS THE SECRET. That said, I do accept - for a range of reasons - self testing isn't for anyone/everyone. The one time I did have a problem with my INR - big time - was just after I first moved to Cornwall and the first GP practice I was registered with. Beyond useless !! Once I transferred to a GP practice that had its own INR Clinic and nursing team problems were solved.
Unfortunately, Warfarin gets blamed for any and every other medical condition and/or prescribed medication side effect, usually by GP's who have no idea of how Warfarin works. Bit like GP's who have no idea of AF - 'cos they don't have it !! If I had a real problem with Warfarin the first thing I would do - just as a start point - is to go to my pharmacist and have a consultation on assessing the impact of other medication I maybe on, ( including any supplementary stuff) on the performance/behaviour of warfarin. In this context the Pharmacist may well know more than a GP.
Of course if you are unhappy with your GP practice in Britain, you can always make a written complaint to your local CCG.
Hi John, thanks for your reply. It was always my plan to purchase the self testing kit, but have been waiting to make sure that I can tolerate the warfarin first. As mentioned, I think that I am becoming intolerant to it now anyway.Whilst I don’t have a problem in purchasing the kit, I cannot get the test strips and stabbers on prescription.
As I pay a huge premium for private medical insurance and that covers all of my cancer monitoring, cardiologist etc. (It wouldn’t cover warfarin monitoring) I feel very strongly that the NHS can pay for something.
As for my GP surgery, they are the best in the area. None of the local surgeries prescribe Warfarin. I have emailed the local CCG complaining and pointing out the difficulties, because the contract with pharmacists hasn’t been thought out properly.
I had a very prompt and sympathetic reply, stating that they are going to address this issue, but is has been delayed because of covid. They assured me that there would be a solution by the end of April. By my calculation it is now May!
As for the aches and pains, I guess I won’t know until I stop Warfarin. I want to take glucosamine/chondroitin because I know it works, but cannot take with warfarin.
I must say ( looking at your latest comments ) that much of what is going on with NHS at the moment is based on the concept that the NHS are playing the numbers game. That is, they are using CoVid as an excuse, NOT, to fulfill many of their more basic responsibilities ( Physio being but one, cataracts being another).
After 11 years with my good buddy Warfarin I have developed skills that not only enable me to self test, but to self dose, and adjust my own dose according to whatever happens with my INR - or to adjust my own vegetable/ fruit intake according to my INR.
That said, all my pain that I have is not in any way influenced by Warfarin. I keep my own personal statistics and have done over time because I am always having ( at times ) heated discussions with my GP. The Head nurse at my surgery INR clinic and I get on so well and I know she bats for me in any areas of conflict.
I have had problems even with my CCG in the past concerning earlier cataract surgery and in the end got nowhere and ended up making a formal, written complaint to my MP in Westminster. Gee, did that sort things. Job done.
Not for me to say, but I know what I'd do with your CCG on the matter of not prescribing test strips. Jabbers I can ignore, they are not that expensive but test strips are. As you say, the NHS can pay for something. Look, its like this - if the NHS can get away with NOT paying for something they darn well will.
Anyway, I hope things get sorted for you in the future.
Just reading your response regarding warfarin etc, I have to agree on lots of points you make about excuses y the nhs, who I must add have been extremely good for me in the past.14 months ago I was unlucky to fall backwards and damage my hip, taken to hospital and had new femur head inserted, did really well and was sent home, with crutches and a toilet frame, that was it.10 days later while exercising felt a clump and pain, called doc who referred me to hospital, had an X-ray and told nothing wrong I replied that I did not imagine it, when another surgeon said I had sustained a fracture and sent home with pain relief and an Easter egg!
Did my exercises but never seemed to get better, spoke to doc who asked a physio to contact me, he called to the house but could not come in due to covid restrictions, he gave me more exercise to do which I did, but unfortunately 14 months later I still cannot walk unaided my left side is so weak it does not hold me, I am also waiting for a vitrectomy operation for cataract and a hole in the macular, so you can imagine I am at a very low ebb, I have had no other help and feel like the great unwashed, and unwanted,
I understand why we oldies are at the back of the queue .
If only I could turn the clock 15 months, I keep hoping!
Hi ValIf you need AC you have to take one of the choices! A rheumatologist I know says a lot of people have had joint flare ups. not serious, after the vaccine
Hi Rosy. I was interested that you mentioned a rheumatologist who said a lot of people were having joint flare ups after the vaccine. I’m wondering if this has happened to me. I have gone from a fit active 72 year old to feeling like an aching 90 year old. Worst first thing in the morning. I am going for a blood test tomorrow. Now hoping aches and pains will go on there own.🤞
I had to stop that stuff. Every part of my body hurt really hurt unliveable pain. My doctor treated me as if I was crazy. I'm not , Really that stuff is poison.
The first anticoagulant I was put on ( by hospital cardiologist ) was Préviscan a vit K antagonist that is used here in France more than Coumadine ( Warfarin ). I had terrible pains in my legs every night that used to come on about 2 hours after taking it. As I was under 65 and had no comorbidities my own cardiologist said I could come off it. The pains disappeared. When afib returned after major bowel sugery I tried Dabigatran ( horrible indigestion) and am now on Apixaban. This makes the joint pain from my osteoarthritis worse. I know because I have reduced the dose to experiment. Also before my hip replacement I was off it altogether for 8 days and a couple after. I had bridging Lovenox jabs and a big improvement in my pain despite still feeling my hip weakness. Some people just have poorer tolerance for any anticoagulants than others. Bottom line.
Hello, yes I have taken warfarin for 17 years and have really bad pains in my joints, however I cannot see a connect with warfarin. Have you asked you GP about the other tablet-that can be used that only needs testing annually.I have arthritis and osteoporosis which I find is sometimes not too bad and another it’s excruciating, so the pain fluctuates.
One thing I have discovered it’s vital to keep moving, sitting for too long stiffens the joints and makes them worse.
Warfarin was actually my last resort. I initially refused it when first started on anticoagulants. Firstly, I had Apixaban, then Dabigatran, then Rivaroxaban , then Edoxaban for just one week and back to Rivaroxaban. All caused severe nausea after a few months of taking them. Edoxaban contains a filler that I know I am intolerant to.
Rivaroxaban caused erosive gastritis and a gastric ulcer. I can’t take PPI’s so I am in a no win situation.
If I have to suffer nausea (can’t tolerate anti sickness tablets either), then I would sooner go back to one of the NOAC’s than remain on Warfarin.
Yes I have tried ginger. The only thing that relieves the nausea is to eat something. That helps for a short while. Sometimes I wake in the night with bad nausea and sit up up bed and eat either a banana or some biscuits.
Hi mrsvemb, my mum was on warfarin for a long time & had awful trouble with her inr. At one point it was 11. Had awful pains in her shoulders & couldn’t lift her arms. Eventually found out that warfarin was causing bleeding into her joints to the extent of having to drain them. 😳 said she wasn’t taking it anymore & didnt, that’s 20 yrs ago she’s now 90.
I know you say that you didn’t get on with the NOACS, but have you tried apixaban? I was on rivaroxaban and didn’t get on with that, but apixaban is fine.
I too h e lower back and pelvis and top of the legs pain and worse when I sit on something he’s, but with me that think it is old age. Lockdown hasn’t helped either.
Apixaban is where is started. Only lasted on it 3 months before getting severe nausea. I didn’t get any aches and pains on any of the NOAC’s. I don’t think lockdown has helped me either.
Yes I know they are important. I am going to try and sell the idea of rotating because I usually am ok for a few months before the nausea sets in. Possibly start on Dabigatran, then as soon as nausea starts change to Apixaban, then change back. And so on.I can’t see a problem with that. At least I would be covered by one or the other.
I am sorry to hear you are having so much pain which you attribute to warfarin which I have taken since 20004, I also have terrific joint pain but it’s arthritis, most days it’s a nuisance but during a flare up can be really badHave you been tested for arthritis?
Thanks for your reply. No I haven’t been tested for arthritis. Waste of time contacting GP at the moment. Will just get told to take paracetamol. I am not necessarily blaming warfarin, more I just wondered if anyone else had experienced this, as it is a possibility as far as timing is concerned.
Today I have started Dabigatran and will be rotating that with Apixaban to try and avoid the nausea.
Obviously have now stopped warfarin so once it is out of my system I should have an answer.
I also asked the haematologist if I can take glucosamine. He said there are no contra indications with the NOAC’s so yes I can take it once Warfarin is out of my system. A definite no with Warfarin.
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