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Warfarin and Body Pain

jeanjeannie50 profile image
46 Replies

For the best part of this year I've had a lot of body pain in my hands, lower legs and back. It's like a sore aching feeling and I've always assumed it was arthritis. However, a few weeks ago I had to have a colonoscopy and was told to stop warfarin for 5 days beforehand. It was towards the end of these five days that I suddenly realised that my pain had gone. Now back on warfarin again the pain is becoming worse each day, to the extent that it is now disturbing my sleep during the night.

I do know that the 1mg tablet contains E123 which is banned in a few countries because of its side effects, so as from yesterday I have omitted to take this tablet and am making up my 4mg daily dose by taking half of a 5mg and also half a 3mg tablet just to see if it helps

Has anyone else experienced this?

Jean

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46 Replies
Rellim296 profile image
Rellim296

I find it staggering that our medication can be filling us up with dubious substances!

Much as I hated warfarin, I did quite enjoy the weekly challenge of selecting the colours to make up seven doses and at the same time use up the packets in a sensible way.

jeanjeannie50 profile image
jeanjeannie50 in reply to Rellim296

I've read that the effects of medication can cause more damage to our bodies than the health problem they are meant to be helping. Are you still taking warfarin or have you moved to one of the NOAC's?

Jean

Rellim296 profile image
Rellim296 in reply to jeanjeannie50

My GP moved me to Rivaroxaban three months ago. It has been like emerging into the sunshine when one has been underground for a long time. My husband says he's pleased to have his old wife back (old in the sense of original I think) and not the disgruntled one he had for almost two years.

I can't say how much I loathed Warfarin. I never achieved stability. Every INR test was a hurdle and I usually came away disappointed and unhappy about the INR, about the dose I was to take and not happy if I had to come back the following week and very bothered if I was sent off for 42 days or more, especially with an INR of 2.0. Whatever the INR, it was almost invariably unsettling and I would be questioning my every mouthful.

I no longer dread the arrival of 6pm. I can now eat like a normal person and I am gleefully stuffing myself with cranberries which are high on my list of favourite foods, along with grapefruit, spinach and ginger.

Oddly, Warfarin with the opportunity of taking Vitamin K if needed bothered me and I don't worry about Rivaroxaban at all. I didn't feel I needed to be on Warfarin when I was bullied into taking it. I was probably (or almost certainly) wrong but the effect on my sense of wellbeing of doing something I felt was not right was devastating. I lost an eighth of my body weight (64kg to 56) and had quite an issue with eating for a while. I gave up shopping as I saw cranberries on every shelf and instead ordered the same things online every week.

Of course the downside is that I'm now having to start to watch my weight or buy larger clothes. I enjoy eating and walk much less than I used to because I am not constantly seething. I once treadmilled 10 miles in a fit of pique - about two and a half hours - and six miles was commonplace. I just about manage three now on a daily basis. I must get my Fitbit out and see how differently I live. I sleep far better now.

Rant over!

jeanjeannie50 profile image
jeanjeannie50 in reply to Rellim296

Thanks for your reply. The more good reports I hear about Rivaroxaban the closer I'm getting to asking for it. In fact I think that's the way I'm going to go.

My INR has always been all over the place, but for the last three weeks has been ok. This time the nurse said right we'll see you in six weeks. I protested and got it down to 4 weeks, but am not happy about it. As it's always all over the place I rarely go without a check every two weeks. I can't forget the time my INR went to 6.5!

Yes, I think you are right about going to Rivaroxaban. Thank you for your rant - it has hit home with me.

Jean

PeterWh profile image
PeterWh in reply to jeanjeannie50

There are also other NOACs which may be more appropriate for you / others. Unfortunately a lot of GPs don't have the knowledge of the pros and cons and even different cardiologists have widely differing opinions!!!

Rellim296 profile image
Rellim296 in reply to PeterWh

My GP said Rivaroxaban was closer to an antidote than other NOACs.

One NOAC has I think a different dose for someone under or over 60kg, so that might be inappropriate for some.

I like a once a day medication as you have to remember to take one of the NOACs twice in a day.

These of course may not be sound medical reasons for a preference, but as we are saying in this thread, there's more to a drug than its medicinal efficacy.

PeterWh profile image
PeterWh in reply to Rellim296

When I was on apixaban I did not worry about having to take it twice a day because I have always had to take something in the morning and something in the evening. Currently Bisoprolol and Digoxin in the morning and Warfarin in the evening.

Rellim296 profile image
Rellim296 in reply to PeterWh

Nice if it works out like that. It used to take me ten minutes to put nine pills x 7 in my little boxes when I took flecainide and warfarin. Happily I'm just on 3 pills a day now: rivaroxaban at breakfast and losartan and atenolol at night. It does seem odd to be taking nothing at 6pm.

Rellim296 profile image
Rellim296 in reply to jeanjeannie50

Well, good luck, Jean. Those who have a stable INR have no idea how hard and discombobulating taking Warfarin can be. 6.5! My highest was 3.7 but it was at the end of the only 56 day gap I had between INR tests. I expressed concern but deep down it was a bit of a triumph. I had made no deliberate attempt to raise my INR. It just never seemed to get anywhere near stable.

I wake up in the morning now and take Rivaroxaban with my breakfast and think how lucky I am to be free of the Warfarin way of life.

seasider18 profile image
seasider18 in reply to jeanjeannie50

Did you ever switch to Rivaroxaban or are you still enduring body pain?

in reply to jeanjeannie50

I may now ask for it.

MammaCass profile image
MammaCass

Jennie, why don't you ask if you can go onto one of the new anticoagulants. I started on Rivaroxaban several months ago, it's one tablet once a day, no blood checks, no hassle and my hair has started to thicken up again

jeanjeannie50 profile image
jeanjeannie50 in reply to MammaCass

Hi Mamma, thanks for your response. Yes, I may well do that. I think my surgery likes to prescribe Rivaroxaban. It would be nice for my hair to thicken back a bit too.

Jean

Tobw profile image
Tobw

Very odd that it's only the 1 mg tablet which has E123 in it. Although they've not been as bad as yours sound, I've been having back and upper leg pains for about eighteen months now which I just put down to getting older and I've not heard or read anything before to suggest that Warfarin can be a cause of such things, but I think I'll mention that about the 1mg tablets to my GP next time I see him.

I'm on 7mg of Warfarin for all but one day a week and, off hand, I cannot think of a way I could take that dosage without having a 1mg tablet even if I were to break the pink and blue ones in half, but there'll probably soon come a time when my dosage is altered and I'll try giving the brown tablets a miss then.

jeanjeannie50 profile image
jeanjeannie50 in reply to Tobw

Hi Tobw - Thanks for your reply.

Well, for the last two days I've not used the 1mg and today I'm feeling so much better and my body pain has faded lots. I can now close my hands without pain.

Have you Googled E123? I think it's the colouring in the 1mg warfarin that is the problem. There are half mg tabs but for some reason doctors do their best not to prescribe them, don't know why. The reason the 1mg could have had such a strong effect on me is because I recently started taking 1 of these tablets every day. I'm seriously thinking about going onto one of the newer NOAC's. If only we knew what their long term health effects were I'd change to them in a flash.

Jean

Tobw profile image
Tobw in reply to jeanjeannie50

Yes, I did have a look on Google Jean and saw it could be linked to asthma. I've had a cough for about three years now which is a nuisance, but, generally is something I can live with. The doctors say it's probably down to the Beta Blockers I'm taking, but maybe it isn't and I could have another reason for packing in the 1mg tablets?

Rellim296 profile image
Rellim296 in reply to Tobw

Do we think that taking 8mg (5 +3) one day and 6 (2x3) the next would be a way forward? The quirky thing about warfarin is that you can always make slight adjustments with your diet.

Tobw profile image
Tobw in reply to Rellim296

I'd be reluctant to do that off my own bat, but I'll mention it to the nurse when I have my next INR.

Barry123 profile image
Barry123 in reply to Tobw

Half a 3 plus half a 5 plus a 3 = 7

However I am led to believe that it is not a good idea to break pills in half as the doseage may not be equally distributed within the tablet.

Barry

ILowe profile image
ILowe in reply to Barry123

The difference in distribution, if it existed, would be miniscule, especially in a 1mg tablet. Also, you tend to use the second half of the tablet the next day, so it averages out.

Because of the way warfarin works, and changes happen slowly, once you have been on warfarin for some time, the body is remarkably balanced about small changes. I think the burden of proof to produce the evidence is on those who think breaking warfarin tablets is a bad idea.

I have been breaking tablets for decades.

Vony profile image
Vony in reply to Barry123

Hi Barry, good point about breaking tabs in half but it is fine as long as there is a break line in the middle. If there is a break line, they can be broken. If not, it can indeed affect the efficacy of the medication.

PeterWh profile image
PeterWh in reply to Vony

And the break is fairly clean.

ILowe profile image
ILowe in reply to Tobw

That is easy to do without 1mg tablets. 3mg. 1.5mg and 2.5mg.

Also, check different suppliers. More than one company makes warfarin. Just an offchance there may be a difference.

seasider18 profile image
seasider18 in reply to ILowe

In the UK we seem not to have 1.5mg or 2.5mg.

ILowe profile image
ILowe in reply to seasider18

I get all my supplies from UK. Sorry I was not clear. Breaking once gives you the range: 0.25. 0.5, 1.5, and 2.5 which adds greatly to the standard supplies of 0.5. 1, 3. and 5.

Last year, while on Amiodarone, I was incredibly stable using 3.75mg and I got there by breaking 5mg twice.

seasider18 profile image
seasider18 in reply to ILowe

Back on it now for three months and without the 1mg have not had any joint pain. At least 1mg maker's 3mg ones have a groove in them to help in breaking them. The nurse at the practice says that they don't agree with splitting them

jeanjeannie50 profile image
jeanjeannie50 in reply to seasider18

That's good to hear. I hate taking any tablets really, but we're caught in a trap!

seasider18 profile image
seasider18 in reply to jeanjeannie50

We do as well. I stopped Statins about three years ago due to muscle pain and Bisoprolol is another No, No for me. I've twice stopped Warfarin when being back in NSR after cardioversions and relied on aspirin. This time I had been back in AF since January of last year and only started Warfarin again in February as I want one of the left atrial appendage occlusion procedures either in a trial my name has been submitted for or privately.

seasider18 profile image
seasider18

I posted on this in another conversation recently. The 1mg uses Amaranth as a colourant and people using Amaranth in other ways report joint pain.

I was twice on warfarin and each time had joint pains as does a neighbour. I was always suspicious as to why the patient information slip highlighted that it contained amaranth.

jeanjeannie50 profile image
jeanjeannie50 in reply to seasider18

Thanks for making me aware of this. Can you please send me the internet link that says Amaranth can cause joint pain.

Jean

seasider18 profile image
seasider18 in reply to jeanjeannie50

Sorry for the delay in answering but I had missed your reply. I did not keep a link to the medical articles on it. If you Google Amaranth and joint pain you will find many patients who highlight it as a problem and may also find a link.

The problem with Amaranth is that there are over fifty types of it from ornamental plants, beneficial leafy plants similar to spinach and others where the seeds are used as a grain.

It was not clear which version is used to colour the Warfarin tablets but it seems to accepted by many to be the cause of joint pain.

There is another similar drug to Warfarin called Acenocoumarol (Sinthrome) that has been around for a long time but is rarely prescribed as many doctors seem not to have heard of it or as an arrhythmia nurse said to me, We know a lot more about Warfarin so stick with it. I've not had any success in getting it prescribed as yet.

ILowe profile image
ILowe in reply to seasider18

The other anticoagulants which are like warfarin have shorter half lives, and are therefore people using them are more likely to be unstable in their INR. While the time delay in changing the INR can be a pain to work with, in the end, it is to our benefit most of the time. 

seasider18 profile image
seasider18 in reply to ILowe

I have asked various people about ACENOCOUMAROL as an alternative some cardiologists had not heard of it. The sister at the anti coagulation clinic said we don't prescribe it as we know more about warfarin.  The NOACs are contra indicated with my tissue aortic valve.

ILowe profile image
ILowe in reply to seasider18

It is in the National Formulary which everyone in UK uses. But I am not surprised that most health people have not heard of it. Acenocoumarol is also known as Sinthrome. I saw a table of equivalences somewhere. I have used it for a few years. But, common consent is that it is harder to manage because of the shorter half-life. A haematologist in UK, a good doctor, knew it well, and he changed me over. So I think your best bet is to stick with Warfarin.

seasider18 profile image
seasider18 in reply to ILowe

My GP had to look it up in BNF when I mentioned it.

ILowe profile image
ILowe in reply to seasider18

It does not say much except that he can prescribe it! You know more than he does from what I told you about half lives. But, in principle, it is good to see that other options are available. Even if only 1 in 100000 need it. There may be circumstances when an alternative to warfarin is useful. And, it has the advantage of being as cheap as Warfarin. FYI it is widely used in other countries.

seasider18 profile image
seasider18 in reply to ILowe

Seems to be preferred in some. It's a funny old world. 

cassie46 profile image
cassie46

Nohing to do with warafin but been taking bisoprolol since jan 2014 - over the ensuing months I felt better some months than others. Tabs came from two different manufacturers - I had a good look at the ingredients and I notice that one of them contained Tartrazine (a food colourant) which has been banned in quite a few countries. It can make you hyper. I stopped using this one and have felt much better since no ups and downs, even GP agreed it was probably the cause. So you never know!

Cassie

jeanjeannie50 profile image
jeanjeannie50 in reply to cassie46

Hi Cassie - Gosh, you wouldn't really have thought about the contents of bisoprolol having different ingredients from one make to the other. I will be sure to check all drugs I take for variants in ingredients now .

Jean

PeterWh profile image
PeterWh in reply to jeanjeannie50

Jean

Minor variations often occur with drugs that are no longer protected by patent and become generic.

If you look at paracetamol or ibuprofen tablets they can vary slightly from manufacturer to manufacturer. However there is always a licence number on every packet. You will also pick up that a particular manufacturer can produce different "brands" (especially for different supermarkets)under the same licence number. Sometimes you can see extra or best for a particular type of condition and these can be double or treble the price!! However when you read the licence number it is identical and then you read the contents it is identical!!! For some the plus maybe adding caffeine or something else - the labelling plus does not have to be standard across manufacturers or brands!! Drugs that are coloured differently will always have different the numbers even if the rest is identical.

Most people don't realise this but I was taught this from an early age (probably about 7 or so) by my mother as her sister was a pharmacist. 50 years ago different brands were much less common but even then there were generic ones and for instance she would always go to Boots and look at their own brand medicines and decide. Often saved quite a lot of money.

After prescription charges wee introduced if it was for her or my dad she would also check to see how much it would cost to buy something rather on the prescription she was given. Sometimes the savings were quite good by buying, particularly if small quantities!!!!

PeterWh profile image
PeterWh

I have 1mg made by Bristol and they use E172 for colour pigment NOT E123. 

jeanjeannie50 profile image
jeanjeannie50 in reply to PeterWh

That's interesting. I've just found my old Warfarin tablets made by Crescent Pharma and they list in contents Amaranth (E123) for the 1mg.

PeterWh profile image
PeterWh in reply to jeanjeannie50

Ask your pharmacist what they stock now and what the colouring is.

jeanjeannie50 profile image
jeanjeannie50 in reply to PeterWh

Have a look at this

gluten-dairy-free.co.uk/Foo...

Oh my, that's a very interesting observation. I've just posted about feeling ill the whole 3 years I've been on warfarin, now having trouble with legs, jumpy and twitchy, no real pain, just very weird sensation. I was wondering about the beta blocker, hadn't seriously thought of warfarin. In my health area they will only supply the brown 1mg tablets, I think we don't have 3 or 5 dose, (I think someone confused the dose). I'm going to ask about this.

jeanjeannie50 profile image
jeanjeannie50 in reply to

What dose of warfarin do you take? My symptoms were an aching body and I don't get it at all now.

Jean

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