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Am I a complete idiot to think that taking paracetamol for 10 years was ok??

It was only when I saw my RA nurse specialist on Tuesday, and he was writing down all my prescription medications, that I casually mentioned taking 2000mg of paracetamol daily (4x500mg pills). He looked horrified and said, "Every single day?". Yes, every day. "For how long?" And that's when I realised that I have been taking paracetamol every day for more than 10 years!!!

I've had years of illness, surgery and now the RA, so I just kept taking it. I had Diclofenic for 6 months after horrendous knee surgery and stopped that because it affected my asthma, so I thought paracetamol was ok. When I told the specialist nurse that I've had a permanent headache for a long as I can remember he said that I may have MOH... medication overuse headache.

So I know I have to wean myself off, and have gone from 4 pills a day to 2, but my god, I feel like I've been run over by a bus. Can this possibly be from paracetamol withdrawal?

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Oh heavens! 10 years..... it's a pretty safe drug, but even so! Well thank goodness you mentioned it to the nurse.

And a 50% drop can have a big effect. Did the nurse not have any advice about how best to reduce? I had a friend who had MOH many years ago, from over the counter codeine & paracetamol. But she hadn't stuck to the same dose and had increased way over recommended daily dose so got into a big mess. So at least you stayed well within the safe limit.

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God I think it's actually been longer than 10 years..... !! The nurse just said to wean myself off it gradually. Feel like all hell today.

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It's proberly been about 2 years since I started taking taking paracetamol at night. I took Volarol r for 30 years twice a day until my GP stopped it because it's a high risk cause of heart trouble. He changed it to Naproxen not quite as good. I don't suffer with headaches. I'm taking Gabapentin for my back and leg nerve pain. Started this in December does make me tired though. X

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Iv been takin it for over 30 years and im fine my blood work is good

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Yet A&E told me it's one of the worst to overdose on (not me), it's not that innocuous and very damaging to the liver.

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Yes if you take over the maximum daily dose it is very dangerous - which is why you can't buy too many packs at a time. It can be a killer.

However Jules was taking less than half the maximum dose, so well within limits.

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The real issue on long term at whatever level is it becomes less and less effective.

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Yes I get that now. Stupid me x

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Not stupid, sweetheart. Just like 99.9% of the population who think its harmless. I had no idea it could be so harmful even at less than max dose

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I wasn't overdosing but I just took it daily for a long time x

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Paracetamol overdose is a big problem and very different taking within safe dosage and under medical care. People with RA take drugs for decades, I’ve had RA for more than 3 decades and have taken pain relief and nsaids daily for that time. Regular monitoring will show up if there are issues.

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Once again... I have not overdosed on paracetamol. I am, and have only taken 1000-2000mg a day x

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I was only reiterating paracetamol at safe dosages, not that you were taking too much. Sometimes we take our drugs automatically without thinking if we still need them. Every now and then I try to miss doses of painkillers or anti infammatories and then remember why I went on them in the first place.

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I take a lot of paracetamol also but when your in pain what else are you meant to do? Due to high bp there is pain relief I can't take so paracetamol is my first choice. Unfortunately anytime we do complain about being in pain were always told just to take pain relief ie more paracetamol/ibuprofen an I'm sure in many cases paracetamol is considered the safest option. Hopefully this feeling doesn't last too long for you.

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I’m only on a basic 200mg dose of hydroxychloroquine - been on it fir about four years - and the endos I have seen have all suggested taking paracetamol if I need ‘something extra’.

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I hope so too. Feel utterly rubbish and now have no idea what to take for pain. I took a diclofenic this morning because my head was thumping so much

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I know it's terrible but 2 paracetamol is usually my breakfast as it helps me function to get the kids ready for school. Have you considered maybe using one of them external sticks on your forehead I think it's called 4head? I mind using this whenever I was pregnant, but I'm not sure if it would help you since yours is caused by medication overuse.

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Possibly. My h has been taking the same dose for around 4 years. It's the only pain relief he can tolerate & it works very well if taken at regular intervals. That said it only takes a tiny corner off the edge but it's better than the alternative! He takes it for his pain resulting from his ribcage that didn't heal properly after open heart surgery & going in again using the same scar to try to rewire his sternum.

You may need to take it slowly coming off them, depending on how you react. It's no different to any other med you become dependent on, withdrawal symptoms may not be as strong pain relief or triptans say but still you will feel rubbish if you taper too quickly, your headache may worsen for a while too but will improve further down reducing them. Med overuse headache is a real thing, paracetamol is a common suspect.

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oh dear

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This post is a shock as never even thought about it. Food for thought methinks so thank you.

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I never thought about it either. Just popped it after breakfast with all my other pills. I guess I have been on so much other medication that the paracetamol went unchecked.

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Here we are we easily just pop our pills and do not follow up updated info on them.

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You know... I used to check in with my pharmacist every year. Sit down with them and give them a list of all my medications and see if anything clashed or was flagged up. They are trained to know these things even better than doctors so think I might pay them a visit again x

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Good idea. One thing to think about as well is that infact taking many pills they may not interact but they all have their risks as an example hard on liver, many others may have the same risks for liver function. This may be an important factor when calculating daily doses(?)

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Sorry did I miss something as I thought it was compulsory to have an assessment with the pharmacist every year in the 🇬🇧. I get hauled in every six months. I could email my pharmacist now and get an answer the following day otherwise she would ask to see me.

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Just goes to show how different everything is! Each visit to GP and Rheumatologist, I am asked to confirm the list of every tablet I take, the dose and how often.

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I get asked that every time I go to the dentist or even the hygienist.

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Yip! At the dentist too. I have also had many operations over the last 5 plus years and at pre op , it's compulsory to inform the medical staff of all meds people take for anesthetic purposes. I believe any med taken long term should be discussed with GP.

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I do usually too, thats what flummoxed me. Until now no-one ever commented on my long use of paracetamol. They either just overlooked it or didn't think it was a problem x

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Think pharmacists like to do that because I believe they pick up a fee for it! They used to do that at our pharmacy but I haven’t had that offer for a long time. At my practice I have an annual review of meds with my doctor - they add a note t my repeat prescription telling me to come in and have a review. I don't know if it’s because I’m so old or if everyone taking a variety of medicines gets that.

I always speak to the pharmacist when I am given something new though to make sure it ‘goes’ with the meds I am already taking. I always ask my GP but I think pharmacists are probably more aware of interactions between medicines.

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I question why to everything

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Why do you do that 😂

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I always ask as I like to know . Have had bad experiences in the past with medications causing a bad reaction.

Oh what a brilliant day I have had today and can go home tomorrow if I promise to rest.

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I know Minty , was just joking

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I know that you are. They are changing my sweet selection again and putting me on leflunomide 20mg swapping it for sulphasalazine. I know that my pharmacist will be watching over me. Maybe I am just lucky to live under this area health authority. They all appear to be on the ball.

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That's good. Some folks aren't so lucky and I feel for them. I'm not lucky here in Edinburgh either. It's never easy. Always a wait or a problem of some sort but I persist if I need to be seen. It reminds me of that programme ' The Gladiators'

The barriers are always UP! You just have to be determined to break through them to see the person you need to see!

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I was first told when I went down this road to keep my book up to date and a copy of a recent script.

I am sure that treatment varies from area to area but I can honestly say the whole the north Devonshire rheumatology nurses team are excellent and cannot praise them enough. Gosh the amount of outside help they have organised for me is definitely beyond what I could have ever expected.

Some of the consultants have a poor bedside manor but then that is to be expected.

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Really good Minty and I wish that for everyone.

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I just wish that there would be a standard, I was speaking to the pre op team at another hospital under a different trust and they told me that hospitals do not share records out of areas and expected me to bring them with me,!doctors do but not hospitals, the lady said that is wastes time and money.

I hope that one day we can all obtain the same quality of treatment wherever we live. On a brighter note I am out of here today am on bed rest at home for a few more days but I am not going home he he. I am going to stay with a very nice lady 😉

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That would be ideal. I don't like this postcode lottery scenario! It should be standard and fair all round as you say.

Re your departure today - Be good! You sound very mischievous haha.

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Let just say I met a very professional lady in the hospital over the last week who knows of me and lives very close. She has made it known that she would like to get to know me 😉 😉

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And your moving in already!! 😮

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No I like my own 🛌.I might be staying for a few days as we are about twenty houses apart. I am certainly eating there today. Will probably be chained down later to make sure that I rest

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Sounds fun! Enjoy! :)

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Goodness no, you're not an idiot. After all, paracetamol is available anywhere and everywhere. It's in the corner shop, behind the counter, right in front of your eyes for 50p. You'd never know a long term low dose could be so damaging if you'd never really thought about it. All it says on the box is "Seek medical help after 3 days" and us creakers are always seeking medical help!

Helix is right about the drop though, 50% is way too much, I bet you feel like the devil's latrine right now. I'd go slow and decrease by half a tablet every week. Many studies suggest painkillers work more effectively if taken with a nice hot cuppa or even better, a coffee. It's the mixture of heat and caffeine which helps. So that might help.

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Love the ' devil's latrine' I also live on paracetamol but will try to cut down now and use your tip of taking reduced dose with a cuppa xx

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I bet there are quite a few of us that see paracetamol as the least bad thing we put in our bodies compared to the other medication but the length of time is my problem x

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"feel like the devil's latrine" I've never heard that one before..love it! :-)

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me too

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Yup I always took it with my morning coffee and then after dinner. Its funny cos my liver function is absolutely fine... having my monthly MTX liver and kidney blood tests shows I've been ok. Thank god.

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Why do they not sell the paracetamol with the antidote n-acetylcysteine built in. Or do you have to ask for it?

I get a little concerned on the amount of pills that I take as they all look so similar and it is easy to make mistakes when the medications is obtained from different suppliers

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Paracetamol is a common drug to overdose on, intentionally or not. Hence only sold in small pack sizes over the counter. The antidote is not built in.

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Just to re-confirm, I have not been taking too much paracetamol. Only 4 x 500mg daily. My RA nurse was commenting on the length of time I'd been taking it, not how much daily.

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Jules, there are many other medications that contain paracetamol. For example - Flu/Cold remedies and many others. Some of us perhaps aren't even aware of this and carry on regardless. I also take paracetamol but only if I can't cope with pain. I think it's wise that you are going to speak with your GP. Just for reassurance if nothing else. As always, prevention is better than cure. X

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No criticism intended , just replying to Minty

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I’ve been wondering this about ibuprofen, I take It at least once a day, in the morning, everyday, and have been for about 18months,

Which was before diagnosis...

And sometimes have 2 more in the afternoon... is that bad?!😬

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It's not "bad", bit you should always make sure your doctors know what you are taking and how much. And you should always keep asking yourself whether you need to take it.

I think what Jules might have been describing is that some people get into the habit of taking something and carry on doing so long after the real need for it is gone. Basically because they get into a dependent cycle. With overuse headaches the problem is that at first the painkiller works, but with constant use you can find yourself in a cycle where you get a headache, so you take the painkiller to get rid of the headache but it's actually the painkiller that is causing it.

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Its not great. Dr chris steele on this morning said that it shouldnt be taken any longer than 10 days due to the risk of gastric bleeding. He said a woman took it daily for 4 weeks and had internal bleeding. Is your stomach ok?

itv.com/thismorning/health?...

articles-mercola-com.cdn.am...

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My stomach seems ok, not sure how I’d know,think I’ll try to cut down to be on the safe side as it quite possibly is not needed now the hydroxy has kicked in - thanks x

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Sounds sensible. No problem. X

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I thought he had died long ago and was surprised to see him on the television recently. I remember him from years ago.

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No hes alive and kicking lol. Seemed well. 😀

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Ibuprofen is an antiflammatory and I was told not to take it for long periods. In fact the bloody reason I've taken paracetamol all this time is because it was the only one that didn't cause specialists to go... "Ooh, no". Even the pain clinic said, "oh paracetamol is fine". But I guess they didn't mean for ten years!

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😂 and there’s me thinking what I’m doing is fine... going to try to cut down and see if I can go without definitely😊

I would have spoken to rhumy... if I had had an appointment... seen them once at diagnosis then rhumy oc health nurse twice.... an “on waiting list” for appointment apparently... but not seen anyone since last summer.....☹️

Hope you get on ok cutting down too xx

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I saw my rheumy specialist last July, and it's been 7 months for me to see the nurse. When I asked if I'd ever see the actual specialist again I was told "only of it's really serious". Oh.

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🤯 just can’t get my head around the fact we don’t get to see a specialist often... even if it was annually.... I only know I’m on waiting list from speaking to someone in admin... left a message on rhumy nurses answerphone and she never got back to me! *sigh* ! Xxx

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Gosh that's bad. I have a rheumy nurse telephone service too and they usually call me back within a few hours. So that is reassuring. If I had a serious problem and told the nurse on the phone then they would make an app for me to see the specialist. But because all my blood tests were good and I had no serious issues, they didn't think I needed to see the specialist. Fair enough I suppose. I think the specialists are there for initial diagnosis and then to get you on the right drugs for you. When I was first diagnosed, I saw my rheumy every 6 weeks for 6 months.

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I want your rhumy nurse😂 x

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Where do you live?

Can you not email your nurse or consultant if you have a problem????

I am sure it varies from area to area but nothing is too much for my care givers.

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I get fed up with seeing mine and the nurse in between, see either one of them on a six week rotation

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Wow lucky you! I’m in the uk-Suffolk- have the phone number of the rhumy nurse.... but last few times she hasn’t got back to me...she didn’t have my prescription until 2 months after rhumy prescribed it...even then it arrived in post as he hadn’t signed it at my appointment... she also didn’t have my X-rays available in her screen either so I had to wait for 3 months TIL saw her a 2nd time to be told there was “synovitis” around my fingers and toes and that my chest X-ray was fine... had pretty much gathered that from the GP.

I’m lucky the hydroxy seems to be controlling things (along with the ibuprofen 😬😂) but I fo feel uncared for...

Sorry for going off topic a little there jules! X

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Sounds as bad as my hospital Ssmart. Maybe even worse. Uncared for is right. It's not on to leave patients hanging like that. x

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Thats ok.... everything posted brings up other issues so it's all good. x

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The pharmacists are very helpful too and generally have more time than the GPs to answer questions. Any concerns and they will advise you to see your GP.

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This is so interesting. I take 2 paracetamol with 60mg of dihydrocod 4 times a day and have done for over 2 years. Rheumy knows this and is fine with it, but I have been concerned about the dihydroco not the paracetamol.

Thanks for bringing this up Jules13

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I know.... I guess keep tabs on it thats all.

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Somebody on this forum said it is the percentage of drop or addition that is important to consider. 50% is huge drop and difficult. 25% can be difficult but possible. 10% is easy. If I am dropping and the pains come back I go back up a little, get things stabilized and then drop again. My rheumy got me to drop by taking less every 2nd time and that helped. Hope this is of help. Wish we did not have to take any of it but such is life. Maybe it is teaching us strength, wisdom and compassion.

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But I didn't think that meant with paracetamol. Its not an addictive painkiller... I think mine is more mental too, part of my routine. But I'm now going to do a week with 2 in the morning and one at night. Then drip again if I feel ok x

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Yep, longterm use actually causes headaches. I was told that forty years ago and it's a subject often mentioned in the media over the years.

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Your rhumytoligis nurse should of told you to go to the drs love they have people that can help with medication only and will guide you on reducing your medication don't worry love I'm sure your not the only one xxx

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I have been to the best pain clinics and they tried everything on me... patches, opiates, codeine based. Nothing worked. The slow release diclofenic after my knee surgery was great, and then when I got RA my doctor said to come off the diclofenic as it didn't go well with the MTX. Hence the only thing left was paracetamol.

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That’s Interesting Jules, I take methotrexate and diclofenac and have done for years.

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I was told its too hard on the liver to take both diclofenic and MTX so I now only take a 50mg diclofenic if I'm having a particularly bad day x

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Hi Jules,

I too mentioned thus to my liver consultant, as I also have autoimmune hepatitis. I've taken paracetamol daily and regularly for over 30 years!!! So don't feel alarmed. His response was that patacetomal in those doses would not cause irreparable damage. He said that there's worse things. However, if you overdose; i.e take a whole pack or more in one go, this can cause irreparable liver damage. So don't worry too much about it. Especially as you've now reduced your intake.

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Finally...some common sense!! I’d been reading some of these replies and worrying as I’ve been taken paracetamol ..for years also with my GP’s knowledge. Like others have said what else are you supposed to do when you’re in pain and can’t tolerate the medications as was my case for a while! I’ve been reading this up until now and panicking. Thank you

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Of course don't panic.

However the point Jules was making is that she has a permanent headache. So is most likely suffering from long term use - which is nothing to do with excess doses. If you don't have these symptoms then don't fret.

(Sorry Jules, I shouldn't really interfere with your post....but don't want people worrying)

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Ah ok thanks..apologies if I sounded blunt but as a long term user it did worry me! I looked it up online also and that calmed my fears too. Sadly, every time I’ve failed with a medication they’ve chucked painkilllers at me including tramadol which I resisted for ages. I can’t tolerate naproxen or ibruprofen except for very short term use. I would not be able to continue working without painkiller use.

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I cant take Naproxen either because I have asthma. In fact, thats why I cant take a lot of anti-inflammatories because of the asthma. Paracetamol was the "safe" one.

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No it's fine.... what I should have mentioned is that the paracetamol rarely got rid of the headaches. Not entirely anyway. I don't really want to be taking any pills unnecessarily so we shall see what happens over the next few weeks x

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Bless you. We can debate about drugs and side effects all day long as many people have such differing opinions. However, we are lucky enough to have access to highly qualified people in the form of consultants and GPs. This is who I speak to if I have any concerns or worries. We ourselves know our bodies best of all and what works and what doesn't. We are all different in how we medically react to things and what is right for one person isn't necessarily right for another. This is why it's always best to be guided by the professionals and yourself of course. Enjoy your Sunday everyone.

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Yes, absolutely! Like I said we can use our own common sense or ask the professionals?!! I know I take more painkillers than the average person but I’m certainly not an idiot and it’s all done with my GP’s and Rheumatologist’s knowledge..what else are we supposed to do, especially when on a waiting list for an operation?!! I wasn’t panicking..just concerned as I’m sure others were who use paracetamol long term. I just don’t think that Jules’s nurse reaction was at all helpful or understanding, especially if it’s made her feel like an idiot! It’s a question really for trained medical professionals.

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That's exactly my point. My RA nurse's reaction was quite extreme. He was shocked and horrified and I felt like an idiot. Not helpful. But all in all he was very helpful.

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No you are not. I thoink tht the hazard from paracetamol is an excessive dose in one day. They are often sold in strips of eight, which is the maximum dose within 24 hours.. My rheumatologist's nurse added that taking them more often than three hours is harmful s well, noy jst the total dose in a day. Overdose is highly damaging to the liver and the only permanent cure for a serious overdose is a liver transplant!. At a normal dose they are the safest mild analgesic with negligible side effects. Note that the soluble version, or the one that I had some time ago are loaded with salt which is not very good. My nurse-friend tells me of extremely tragic suicide attempts with paracetamol where the victim fades away over weeks from liver failure and have time to change their mind about their suicidal urges! Terribly sad.

I am happy to take them as being safer than non-steroidals but only mildly effective to be honest.

Back to the original question, I don't think that long-term use is harmful to the liver at the proper dose.

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Well anything long-term is not advised especially if you've become immune to it, which I think I have x

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I disagree, many people are on long-term pain relief or other meds for chronic conditions. Paracetamol is probably the safest drug on the market and when taken regularly it I'd highly effective. It is less effective if taken sporadically. And if there was a question that an accidental overdose had been taken you can receive an infusion called NAC which is the antidote, but you'd have to take an awful lot to be over the treatment line. Its only when people take a massive intentional overdose, and then don't seek help for days that liver failure is caused because although you might feel fine, paracetamol keeps on working.

If anyone thinks they are at risk if an accidental overdose then of course they should get checked out but that wouldn't be the case if you've taken 2g a day for 10 years. Unless you have been specifically told not to take it for some reason.

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Please don't worry. Such an odd thing for a nurse to say.

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Very well said! I do take it on a regular basis , I can use my common sense on cutting down (but that’s not the case at the moment )and my DOCTOR’s advice! 😊

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I've never overdosed. I've taken 500mg x 2 in the am and the same in the pm. It was never me taking too much in one day, it was taking them for such an extended period of time.

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I know i would never suggest that you had overdosed. I was more trying to follow up from Hawker995s comment about overdose and provide further information. But for some reason HU had me replying to you. Sorry for the confusion.

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Thats ok. People keep using the word overdose and it's not helpful x

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No, you are not an idiot, taking painkillers becomes a way of life and it is the first thing doctors recommend if you complain of pain. A 50% drop is a bit drastic, I would definitely have a longer term plan reduce gradually. I know from weaning myself off steroids that I couldn't have dropped that quickly. Good luck.

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yup. Noted x

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It is so hard to know what to do over taking pain killers. I am in such dreadful pain from RA, OA, PsA and fibro and was on tramadol plus paracetamol 3 times a day. I was told that I should cut down on the tramadol because it can be dangerous and have got down to just taking it first thing in the morning. I now take paracetamol with the tramodol in the morning, once in the middle of the afternoon and then again when I go to bed. I was told that it was safe to take this where as tramadol isn't. As others say, what are you supposed to do when your pain is so bad?

I am also waiting to have a new knee and possibly a new shoulder and I expect I will need some strong pain relief for that.

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My knee surgery in 2015 was what increased my pain meds from just paracetamol to diclofenic on top. The the MTX was added for RA and so I had to come off the diclofenic. Arghhhhh. I don't know whats left. I cant take a lot of things and so am back to square one.

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I feel just the same Jules. It is so hard to know what to do and which way to turn now. I can't take Diclofenic or anything aspirin based because i have asthma and a hiatus hernia. I went out to a book meeting this afternoon and felt that I stand out there because of walking so slowly, struggling to get up into the front door because there is a step and there are older people there who are so active. I had a job to stay awake and then when I wanted to go to the loo I was trying to put it off until my husband came to collect me and bring me home because I would have to go up the stairs to get to the loo there. We have had a stair lift put in here thank goodness. People mostly have no idea just what we go through and how difficult life can be. One person asked me if I was better now (as if you can get better from RA, OA and PsA etc).

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I get asked that all the time. Even this morning a close friend asked me if I was in remission. I said, well I'm in drug remission which means the pills are working and controlling the inflammation in my body. I'm not in remission from the actually illness because that would mean I don't need any medication anymore.

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They just don't get it, do they? xx

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Wow that’s a long time Jules good luck and long term you’ll feel the benefits xxx

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Hi,

I'm not sure we are the best people to ask if you have been an idiot or not Jules because we don't know your health background and are not specialists or medical doctors. I would speak to my GP about it. I think that's the most sensible and appropriate course of action. X

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My RA nurse looked at me as if I was an idiot!!!

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Your RA nurse needs to get the facts straight. Many people, including me take paracetamol 4 times a day. So 8 tablets, total of 4g . I take them at 6am, noon, 6pm and about , 10:30-11pm.

It is only dangerous when more than 8 tablets are taken within a 24 hr period or, there is a more significant risk if you weigh under 45kg. I don't know why your RA nurse has got you so alarmed at this, unless you have serious liver problems. I used to regularly give regular paracetamol to post op liver transplant recipients as it is such an effective drug when used regularly.

Paracetamol does not carry the risks that NSAIDs do so your RA nurse may well know about RA, but analgesia clearly isnt their speciality.

A GP or practise nurse should be able to reassure you.

You're not an idiot. No point in being in pain. If it helps you be mobile and live a life then take it.

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Its not the dosage its the fact I've taken them every day for over 10 years

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What does your GP say about that Jules? ( Taking paracetamol everyday for 10 years)

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Haven't talked to my GP about it, but its on all my notes. The fact that it isn't prescribed means it's actually not on your medical records and therefore not flagged up as a problem. Paracetamol is 30p a pack in my supermarket so it's the cheapest painkiller around, and cheaper than a bag of sweets. In fact a bag of sweets a day is far worse for you I imagine!! I will talk to my GP.

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Ok, I see that it is a long time but if it hasn't caused you any damage in ten years then why the alarm from the RA nurse? If it's been fine for ten years its unlikely to become problematic now. Its all about cost vs benefit. If you have had benefit from the paracetamol but no ill effects then I can't understand why the concern.

Ten years is a long time but RA/RD is such a painful condition and paracetamol is such a safe drug compared to others that I am surprised at her reaction. No drug is without risk but I certainly wouldn't reduce your intake and cause your pain to return just because of the length of time that you have been taking it. I've been on it regularly for years and I know it is one of the most effective painkillers for me. Also, in my career I've come across so many people who take it for years and as long as you stick to the correct dosage and instructions, and your GP is aware as to why you are taking it, then I can't see the alarm. But reassurance is a great thing and if you speak to your GP about it then I'm sure they can advice you.

The only time I dropped my dose to three times a day instead of 4 was when my liver function was slightly elevated due to MTX but it resolved within days and was likely due to a virus.

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What Jules is trying to explain is that despite taking Paracetamol for 10+ years....she STILL HAS AN ALMOST PERMANENT HEADACHE.

It is a known fact that taking this drug long term can cause headaches....maybe not for everybody....but it could be the cause of her headaches.

Therefore she has been advised to slowly reduce taking it, in the hope that her headaches will cease.

I'm sure she will keep in touch with her medical team& take their professional advice.

Let's hope she soon loses the headaches.

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Yes, there is evidence to prove that persistent paracetamol use can induce and feed a headache, as can codeine which is more of a culprit,

But Jules asked the question, was she an idiot to think that it was ok to take paracetamol for 10 years and in my opinion, she isn't an idiot at all. Question asked and answered. In my opinion.

Others may have different views on other peoples opinions and I respect that.

There are many causes of a persistent headache and all need to be considered. But I agree, paracetamol can feed a headache.

It would just be a shame for others to stop taking paracetamol regularly and be in pain because they had read of a potential bad reaction that one person may be having.

I very much hope that Jules' headache resolves by some means as soon as possible.

But I would respectfully ask you to not respond to my opinions in capitals as it comes across as aggressive, whether that was the intention or not. Thank you.

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So.... yes, I did think paracetamol was helping and yes, I also still have headaches, even after taking the paracetamol, so the RA nurse said I could have MID, Medically Induced Headaches.

If the paracetamol took my headache away completely then it would be working, but it hasn't. So the fact that I still have pain, even after taking, flagged up that the use of paracetamol for so long, was probably causing the headaches and not taking them away.

I'm going to slowly reduce and see what happens. I know that coming off paracetamol may also cause headaches because my body is used to having them. So it will be an interesting experiment.

If I come off them slowly over 4 - 8 weeks... and the headaches are worse than ever, then I know the paracetamol is actually helping.

It's similar to when you have a food intolerance... you have to cleanse your body of caffeine, dairy, gluten, sugar, alcohol, in order to see what exactly is causing the intolerance when you slowly reintroduce that food. I'm sort of going to do that. I eat cleanly, I exercise, I drink lots of water, I don't really drink alcohol, have low gluten and hardly any sugar, so my body is pretty clean. When I slowly take away the paracetamol it will show what and what isn't working.

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Well good luck with it and I hope you get some resolution. Headaches/migraines are awful to live with.

Two colleagues of mine were told they might have medication induced headache and they had to stop their meds, one was on codeine and paracetamol and one just on paracetamol.

The one who stopped codeine and paracetamol felt benefit from stopping the codeine but still had a long term headache. She was eventually diagnosed with a low prolactin level and a degree of Intracranial hypertension and was discovered and treated by an LP and medication. She had regular LPs to keep her pressure down.

The other one had no response from coming off paracetamol and was treated successfully with propanolol by her GP although it took a while to get the dose correct but she seems to have got there in the end.

I really wish you good luck with it. And I hope you get some relief soon.

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I guess it's mixing with other drugs or whatever that we have to be careful of.

Many of us have other conditions requiring medication in addition to RA.

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Agreed, and if those medications can cause organ damage then correct monitoring should be followed as per NICE guidelines, for example MTX but that is monitoring liver function and isn't contraindicated with paracetamol. But as someone who can prescribe and administer medications as part of their profession I would be concerned that someone is left in pain because they have cut down on their analgesia without good cause. We're all individual as you say and all have different regimes which is why I agree with you that Jules should seek advice from her GP.

But paracetamol is essentially one of the safest drugs for pain as long as its taken responsibly.

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Totally!

I have had faith in paracetamol for years. It's been the best analgesia for me especially through the PMT times! It's helped relieve the pain in my wrist/hand more than diclofenac has

It's raising awareness I think. As you quite rightly say, many analgesia tablets are available 24/7 in most shops nowadays. As is fags and alcohol and cannabis on the streets.

Common sense to what we put into our bodies.

I have no idea if there is any issue taking paracetamol everyday. I take it only when I have pain I can't cope with.

I take red wine when I feel like it ( often) 😁 and I can't get any bloody street cannabis just now as they have run out! Hahaha

I wish! 😉😜

Xxx

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Indeed common sense is key! You bring up an interesting point (and a sore one for me). I used to love a glass of red wine or a G&T but made a choice to give up alcohol when I became unwell as I am on many drugs and have several AI diseases and it became pretty obvious that alcohol made some of my symptoms worse and I knew I would be putting myself at risk with my meds and alcohol.

But I've just taken the time to read the leaflet in my paracetamol box after reading through this thread and it advises that you don't have alcohol when taking paracetamol. I suppose it's each to their own but its something that most people might not consider.

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That's right. You shouldn't drink alcohol with paracetamol and I don't.

I've heard a lot of people have given up alcohol since diagnosis of RA. What a thought! 😕 ( for me I mean).

I love the Mediterranean diet and that goes with red wine :)

I don't drink much else apart from a cool cider in the summer on holiday or in a lovely beer garden.

Everything in moderation - I think!

We can all become a little obsessive with things and in turn it can cause depression if our expectations and efforts don't materialise.

My RA has definitely caused me to adjust lifestyle. Not dramatically but I know what's going to give me grief and what's not.

I think it's important to accept our condition. We need to because our bodies have changed.

This has been a great thread Jules and Co. Very interesting, informative and helpful.

Xxx

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I gave up alcohol, more or less, pre RA diagnosis due to high bp. Then post diagnosis completely esp cos on mtx. On my recent visit to the rheumy nurse i commented that, after losing both parents within 11 months and a son moving abroad on top of the Ra bombshell, i had felt like having a few drinks to take the edge of but of course could't. She laughed and asked why not? Apparently if your liver n kidney bloods are ok then its fine to drink within the gov guidelines and not do any harm. Hello again to the occasional pinot !!

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Marvellous Thingybob!

I think life can be trying enough without additional restrictions!

It is a case of moderation and common sense. When I do have a red wine or three, I drink a large glass of water inbetween. Just to keep the kidneys working healthy and to flush out everything. It works! Had no problems in that department for years.

Enjoy your wee tipple. Maybe some music and a dance will follow....

:) Xxx

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Just responding to your thread title Jules!

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I know.x

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But your not an idiot, if you don't know, you don't know !

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I absolutely agree with your comment 😊

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Hi jules you are not an idiot .lots of people take meds for long term it is under doctors guidance can understand your thinking though and you do get different views have you zpoke to your gp who does and moniters your prescriptions and ask their views . .hope you get things reduced and less withdrawal symptoms if thats wots causing it .your meds you are takeing for the long periods im sure you will be fine with that also .doctors reiview meds constantly it is procedures and law .which ever doctor who it is who do you prescription will be doing this and moniter presciptions some countys even put it on presriotions now to phone doc if doc is not happy etc .hope you improve soon

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I have a problem with paracetamol. No, I’m not addicted - but ever since I found out ‘the truth’ about how effective it is, I have never taken it since.

I must admit to never really noticing it making much difference, but it is so freely given and is pretty much always the first go-to painkiller suggested by the medical profession. So it must work, right? They wouldn’t just keep giving it out when it can harm (kill) people in relatively low doses of it just didn’t work - would they?

Guess what? It doesn’t work. Not for acute lower back pain, not for chronic neuropathic pain, not for any pain to any significant degree.

The thing is with paracetamol it has been around so long, and so many people think of it as a ‘safe’ ‘painkiller’ that when the evidence emerges that says, actually we have been wasting our time and money for the last 50 years, and not only that we have been harming people unnecessarily for all of that time - nobody takes any notice. It is incredible really that globally we consume ‘thousands of tons’ of paracetamol a year. For little, to no reason.

I’m sure a lot of you will be wondering why I have this opinion because nobody ever seems to have heard this - so I will let the good researchers at Cochrane UK explain:

uk.cochrane.org/news/parace...

I would really, really recommend reading it too.

🙏🏻

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I just want to clarify what I have been saying to medical professionals for the last 30 years and why my RA nurse reacted the way he did.

I have had a persistent headache for as long as I can remember. I have been tested, poked and prodded to get to the bottom of the cause of these headaches... everything from MRI's for possible brain tumour, x-rays for spinal damage, eye tests, hearing tests, I've seen osteopaths, acupuncturists, physiotherapists, and even seen a shrink to see if its all in the mind!!! When none of these came back with any explanation, I just started taking paracetamol. It never really got rid of the headaches, but it seemed to dull them a little. I've had quite a few surgeries, so amongst all that I've been on stronger painkillers over the years but I keep taking the paracetamol for the headaches.

On Tuesday I saw this particular RA nurse for the first time. It was the first time he had seen me or my notes and was checking all my drugs. I added that I always have a headache and I take paracetamol for it. And had done for over 10 years. I told him that it didn’t really help all that much anymore and he told me that it was probably the long term use of paracetamol that was actually now causing the headaches. 


He referred to Medication-overuse headache - a dull constant headache which is often worse in the morning. It is present on most days or part of every day. Only people who are prone to headaches develop this syndrome, generally those with migraine or a family history of migraine (my mother had migraines for years). It is generally not seen in people taking painkillers for reasons other than headaches, such as arthritis or back pain.

It is a vicious cycle and even if the medication is stopped, withdrawal symptoms are commonly reported including chronic headache. The need to alleviate these withdrawal symptoms perpetuates further use of painkilling drugs and can result in a cycle of medication overuse.

So that’s what he thought might be happening.

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I should have started with all that and I do apologise if I wasn't clearer.

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It's a complex subject with lots of different opinions.

I wonder if you have considered anxiety as being a cause for headaches.

I am an HSP ( highly sensitive person). I have anxiety. I was born this way and accept who I am. I get headaches too, not migraines but just headache especially when under stress or anxiety due to various things. My 'medicine' is away from crowds,noise, people, hassle and so on. A quiet beach/forest walk, hillwalking or a drive somewhere calm and peaceful. Meditation outdoors is great for mental balance. It's worth considering especially given the fact you have had the full monty tests from a physical point of view.

I wish you well.

Xxx

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Anxiety every day for 30 years?? God, I don't think so. I'm not really an anxious person. I have bouts of ups and downs (as most do) but I would still have a headache when I was lying on a beach in Costa Rica for a month. So don't think it's that. x

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Ahh ok. Anxiety doesn't occur everyday. Whatever your problem is and reasons to take daily meds seems a mystery.

Let's hope it settles.

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Oh crumbs ... Good 🍀 🍯 It'll take time, but you will be all right x

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