Paracetamol does not work: Hi all Following on from... - NRAS

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Paracetamol does not work

PFKAAde profile image
63 Replies

Hi all

Following on from another post regarding paracetamol I noticed that almost every sub-thread includes at least one response along the lines of “safe, negligible side-effects, painkiller, better than x, just paracetamol etc etc ”, and despite posting a link to one of the most trustworthy research organisations there is that clearly shows paracetamol is not very effective and is actively harmful - nobody seemed to even notice.

So I have started another thread so that everyone sees it and maybe actually reads the link(s):

cochrane.org/news/effective...

evidentlycochrane.net/parac...

If you aren’t familiar with Cochrane, read up on it. They are one of the most respected research organisations there is, and they do rather large meta-analyses taking into account all of the relevant studies and pooling all of the data.

This is a quote from one of the above links:

“So how does paracetamol stack up against what people with acute back pain want? A Cochrane review is unequivocal – it doesn’t work”.

It doesn’t work.

That specific quote was about lower-back pain, but if you read the link you will see that there is almost no evidence that paracetamol works for any pain at all. And if it does, the effect is too small to be worth the risk. Particularly if you take it long-term or in high (read: normal maximum) doses.

But, but it’s safe, no? No:

“In England and Wales an estimated 41,200 cases of paracetamol poisoning occurred in 1989 to 1990, with a mortality of 0.40%. It is estimated that 150 to 200 deaths and 15 to 20 liver transplants occur as a result of poisoning each year in England and Wales.”

From:

en.m.wikipedia.org/wiki/Par...

So, it doesn’t work and it kills people.

Why do we carry on using it?

For myself I found NSAIDS to be far more effective against inflammatory pain. Even opiates make almost no difference to me when I am feeling RA pain. Diclofenic works a treat, but that is also really, really bad for you. As are the Proton Pump Inhibitors that are commonly prescribed alongside them — but at least they work! My Rheumatologist has always accepted that diclofenac is really not very good for you, but he realises that it is a balance between effectiveness and harm.

Paracetamol is not even effective, and is still harmful.

I will welcome any responses that show any eveidence to show that what I am saying is wrong, and please understand that I am saying this because nobody realises that it doesn’t work and we all take it thinking “at least it doesn’t harm me” and I’d rather people didn’t just take something for no reason.

🙏🏻

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hawker955 profile image
hawker955

Hdello PFKAde, you are correct about Cochrane reviews , they are considered highly reliable and ustworthy because their meta-analyses are so comprehensive. However one fundamental problem wth pain assessments is that they are so subjective and cannot be measured objectively. It is impossible to accurately compare one person's pain with another. Unlike, say, the degree of swelling of a leg for example that can be measured and monitored with a tape-measure. Or the time taken for a wound to heal. So the studies have to rely on the subjects being very similar and open about their sensations. Having said that, I can accept that paracetamol is not a very strong painkiller because that is the consensus of a lot of studies. The pain can be measured more objectively in animals perhaps by taking measurements of the way they walk for example , which supports your conclusion.

Thanks, that is an interesting and useful topic.

PFKAAde profile image
PFKAAde in reply to hawker955

It’s not ‘my’ conclusion, it is the result of multiple studies that take into account the subjective nature of pain, and meta-analyses of those studies (that also try to compensate for the shortcomings of the studies).

All pain relief is measured against the same criteria - paracetamol has been found not to work. However it is measured.

🙏🏻

hawker955 profile image
hawker955 in reply to PFKAAde

Hello again PFKAde. I am fully aware that it is a useful metanalysis that you are using and not specifically your own conclusion. But even meta-analyses have their problems. I know that paracetamol is indeed only claimed to be a weak pain-killer but I personally believe that it does still have its uses.

Also the fact it kills people is often because of deliberate overdose when people tragically deliberately overdose themselves. Then it causes irreversible liver failure and a slow wasting death. I am not sure that that is a good reason for us sufferers of RA to stop taking it when we need a mild pain-killer. We do just need to monitor our daily intake very carefully. At the normal dosage it does not do any harm to the liver so can be used as long as it is done carefully. Nor does it have the side-effects of non-steroidal drugs like ibuprofen or even naproxen, when used in either the short-term or long-term. If one's pain is not adequately controlled by paracetamol then another treatment is probably required. I think that the most effective pain-relief we have are the potent biological treatments to stop the auto-immune process at the start.

PFKAAde profile image
PFKAAde in reply to hawker955

Hi hawker955

I fully agree that we have to do anything that helps us get through the day. If that means taking paracetamol, so be it.

I took diclofenac and lansoprazole for over 15 years. Then I started reading up on them (I think I was in denial and would have swallowed razor blades if they’d helped, when it was first prescribed!) and I realised what a bad idea it was to take them for so long without even giving it a second thought. I firmly believe that a lot of us do just that with paracetamol, and as ‘safe’ as it might be (although if you read up on it, it isn’t ‘that’ safe), any chemical that we ingest for years is putting extra strain on our livers, kidneys, hearts etc etc.

Believe me I know that there is a point whereby the risks (like I take from taking Humira) are worth it due to the benefits we gain, whether that is less pain, fewer disease symptoms or whatever.

The point I am (somewhat clumsily) trying to make is that when it comes to paracetamol the benefits might be overplayed by the medical community. And a lot of us (myself included) tend to think that if every doctor says it’s ok, it must be. Therefore we might be adding to the load our bodies have to deal with and gaining little or no benefit from it.

When the research struggles to find a benefit from something as ubiquitous and well studied as paracetamol it makes me wonder why it is so widely used, and I can’t help but thinking it has more to do with its perceived safety profile (well, it won’t hurt will it...) rather than its efficacy as a pain reliever.

But like I say, if it works and isn’t hurting then by all means. I don’t want to stop people taking something if they need it or feel it helps, but if someone ends up taking it for the sake of it (like I sort of did with diclofenac) then maybe try a few days / weeks off. When I stopped diclofenac my hands and wrists were quite painful for a few weeks / months but I’d decided to stop so I put up with it. Now, a year or more later, I get less pain in my hands and wrists than I used to when on diclofenac. I can’t say for sure why that is, and they do still hurt (20 years with RA has seen to that), but I never feel like taking anti-inflammatories these days. That was entirely my choice because none of my doctors would have suggested stopping it. In fact they were all a bit surprised I wanted to, but also supportive because they’ve read the same studies!

Anyway, rambling now!

All the best.

🙏🏻

helixhelix profile image
helixhelix

Yes, cochrane studies are great.

I think the safety record of paracetamol is actually good as long as you don't exceed dosage limits. Your quote specifically refers to poisoning, which I take to mean taking over the recommended limit, whether deliberately or accidentally, not normal long term use.

As for whether it's effective... well little is effective for lower back pain apart from exercise. I find it's no use for inflammatory pain, but was helpful for period pains, and for painful chest from coughing, headaches, those sort of things. So it has a use. And for me especially for 2-3 days, more that and not much help. Whether that is the drug itself, or mere placebo effect I can't say. All I can say is that it does relieve certain types of mild to moderate pain for me.

PFKAAde profile image
PFKAAde in reply to helixhelix

Ok maybe the poisoning link is not relevant to people taking it within recommended doses, but it shows you that it isn’t exactly ‘safe’.

Regarding the rest, only a small part of it is about lower back pain. The consensus is that it doesn’t work, regardless of what the pain is caused by. Read through the links and the studies they reference. There is little to no evidence that paracetamol works for any pain.

I have no vested interest in paracetamol. I don’t work for the main competitor and I have no wish to deprive people of things that make their lives better. I hate diclofenac but will admit that it ‘works’ with regards pain relief. I’ve never had period pain, so can’t comment on that - but for everything else I have never thought, for example - oh no I forgot to take my paracetamol. When I was taking diclofenac daily I knew the second I woke up in the morning if I’d forgotten to take it the night before.

This is a bug-bear of mine, the evidence that people usually ask for shows quite clearly that the way paracetamol is used at present is not appropriate given the results of studies that have looked into it. And yet doctors automatically say ‘take some paracetamol and...’ almost like it is used as a harmless way of shutting patients up. It isn’t harmless and it doesn’t work. That is my ‘beef’ with it.

If you can point me in the direction of a (good quality) study that shows it is effective above and beyond placebo to an extent that it is actually worth taking, for anything at all, then I’m all 👀 and 👂🏻

🙏🏻

AgedCrone profile image
AgedCrone in reply to PFKAAde

Think you got it in one PFKAAde...it gets the patient out the door.

Mmrr profile image
Mmrr in reply to AgedCrone

Indeed as do a prescription for antidepressants.

in reply to helixhelix

I agree helixhelix, I was going to say exactly the same. Also I need to add that although I also found nsaids to be more effective for inflammatory pain I am unable to take them.

Hezekiah profile image
Hezekiah in reply to helixhelix

"little is effective for lower back pain apart from exercise" - wholeheartedly agree with you there helixhelix. However, doing the exercise is the hard part it seems, both for me and other people.

BUDGIEBURDEKIN profile image
BUDGIEBURDEKIN

From what I’ve read and pregabin seems to give as side efects, the same symptoms as fibromyalgia.

PFKAAde profile image
PFKAAde in reply to BUDGIEBURDEKIN

The list of possible side-effects from pregabalin is beyond belief (particularly when you get most of them).

And it doesn’t work 😛

PFKAAde profile image
PFKAAde

Don’t get me going on pregabalin 😉

PFKAAde profile image
PFKAAde

Yeah, I don’t know about that. One thing commonly claimed is that paracetamol is a potentiator of other medications.

I don’t know if that is true or just dogma.

🙏🏻

wishbone profile image
wishbone in reply to PFKAAde

I've been told that by two different doctors.

Simba1992 profile image
Simba1992 in reply to PFKAAde

When taking a new med it is always essential to look at the already existing med load and their risks. If you are already taking meds that are hard on liver, heart kidneys you must see this as a whole. Its not possible to separate the risks without the accumulating effect on organs. A safe dose may vary greatly in different individuals depending on the existing med load, existing comordities, age, weight. Long term daily use is also different from occasional use. There is new research on this.

PFKAAde profile image
PFKAAde in reply to Simba1992

Totally agree. I guess it is this variation in response that causes so many problems, and the fact that drugs are not tested over the medium to long term before being released meaning the long-term effects of things like PPIs only become apparent many years later.

I have to be thoroughly convinced by my own research before taking any new meds these days.

🙏🏻

PFKAAde profile image
PFKAAde

Ha, I was desperately in need of some pain relief that would enable me to continue chasing after my two pre-school children for whom I was the main carer and my knee was in need of a TKR (too young at the time).

I was already on amitriptyline, morphine, diclofenac and many other drugs. My doctor suggested pregabalin and I agreed out of desperation without really looking into it. Last time I make that mistake.

It never helped in the slightest and was undoubtedly the worst drug I have ever taken in terms of side-effects, withdrawal-effects and lack of efficacy. Took me over 2 years of indescribable difficulty to taper off it. And then another year to fully recover. I know that sounds like an exaggeration, but it isn’t.

I always question everything that any doctor says now. Respectfully of course.

🙏🏻

daisychains58 profile image
daisychains58 in reply to PFKAAde

I’ve had 3 doctors want me to take lyrica (pregabalin) and refused every time. Last November after bilateral TKR the physio doctor wanted me to try Lyrica for the uncontrolled pain but I refused. I always research medication and the horror stories as you have described, particularly with the taper, are all too common with pregabalin. Sorry you had to experience that. I think maybe pregabalin is more for neuropathic pain where it maybe more effective, always good to respectively question doctors.

🙏

PFKAAde profile image
PFKAAde in reply to daisychains58

Thank you for your thoughts.

Yes it is supposed to be for neuropathic Pain, and even that is ‘off label’.

Interesting that you were offered it to for non-neuropathic pain...

nomoreheels profile image
nomoreheels in reply to PFKAAde

Hiya Ade. Whilst it's true there was a directive that only Lyrica was licensed for & the specific brand could only could be prescribed for neuropathic pain that has since lapsed. When I first started pregabalin for it my GP had to conform to the directive but since Pfizer's patent protection has ended generic versions can be prescribed. I'm now prescribed Lecaent made by Actavis, same price as Lyrica, & licensed of course for treating peripheral & central neuropathic pain.

PFKAAde profile image
PFKAAde in reply to nomoreheels

Hi nomoreheels

Yes I was on Lyrica when the patent lapsed (in the UK - they had an extension in the US) and was immediately changed to generic.

Pfizer have been fighting the patent ruling in the UK and have recently lost their case.

pharmaphorum.com/news/pfize...

Couldn’t have happened to a more deserving company (not sure how familiar you are with the history of pregabalin, but it makes for interesting reading) considering they have been repeatedly sued for miss-selling it (pushing it for off-label uses that it isn’t licensed for in the US) and were the first pharma to be hit with a multi multi million dollar fine for precisely that. Just checked and it was $2.3 BILLION, and they still made a profit that year.

theguardian.com/business/20...

Didn’t stop them though as they make an absolute fortune from it.

🙏🏻

PFKAAde profile image
PFKAAde

Sorry, not trying to worry anyone. It works for some, apparently. Just not me. I noticed when I forgot a dose, so if you’ve ever done that and didn’t feel like you were about to die — you might be alright!

🙏🏻

Shalf profile image
Shalf

I did read the article and found it very interesting.

I couldn't quite get my head around why anyone would keep taking paracetamol if the symptoms were ongoing.

Thanks for kindly posting this info.

Xx

happytulip profile image
happytulip

I think that everyone's pain is so individual that what works for one person won't work for another. There are a couple of comments on here about how pregabalin wasn't a success for some but I have found it a total life saver. On the other hand I've heard great things about duIoxetine but I couldn't tolerate it at all. I know if I don't take paracetamol my day is more painful and harder to manage. Unfortunately I can't take NSAIDs but wish I could.

Paracetamol won't necessarily do much for inflammation, an NSAID would work on that depending on the level of inflammation, drug and dose. Nerve pain is unlikely to respond to paracetamol, again that's where things like gabapentin and pregablin often come in. Fibro and systemic pain can respond really well to lidocaine infusions. For some they work, others they don't.

I find the best relief for lower back pain is gentle mobilisation and a tens machine, but that's just me.

Its easy to say that something doesn't work because of valid research and I agree with your point but I just can't agree that paracetamol doesn't work for me personally. My example, period pain and the hell that I went through with it in my teens. Paracetamol was my saviour and was the only thing that could get me through my school day.

Bottom line I think everyones disease is different and if you find something that manages your pain and works for you then great.

PFKAAde profile image
PFKAAde in reply to happytulip

Absolutely, if it works for you that is all that really matters.

Yes I understand that different meds work better (or not 😀) for different pain, and I’m glad you find pregabalin to be useful. All of these ‘off label’ meds seem to suit some and totally not suit others.

I totally agree about mobilisation for back pain, that and physical exercise is what has worked for me (after the surgery!).

All the best.

🙏🏻

hawker955 profile image
hawker955 in reply to PFKAAde

Hello PFkAde again. Interesting that you mention surgery for back pain. A few years ago I attended a professional conference about pain management in man and animals. An American professor as a guest speaker stood up and said that in the USA the medics turn to surgery for back pain much more readily than here in the UK. He then remarked, What we have found in he USA with all of our surgical experience is that there is no back pain hat is so severe that surgery cannot make it worse!! A scary comment that made me decide never to have back surgery if have the choice!

PFKAAde profile image
PFKAAde in reply to hawker955

Yes totally agree. It is a very difficult decision to make — whether to have surgery or not. I didn’t have much choice as a disc had prolapsed into my spinal cord and I couldn’t feel my legs. Then it happened again further up.

The surgeon who did the ops was concerned that I might need a fusion but was very reluctant due to the risks.

Since having these issues I have realised that I am actually quite lucky in a sense, because failed back surgery ‘syndrome’ is a thing, and not one that you want! Adhesive arachnoiditis, for example, sounds like a lifetime of pain.

Good to hear that that particular surgeon was also reluctant to operate.

🙏🏻

hawker955 profile image
hawker955 in reply to PFKAAde

Yes, but if you had loss of sensation in your legs due to a prolapsed disc, that is one very good reason to go ahead with surgery. As an emergency in fact. If there is a lesion putting pressure on the spinal cord, such as the disc or some other physical pressure, then that pressure must be relieved as soon as possible to prevent long-term damage. Pressure on the spinal cord = very bad. The only warning I suppose is that one might have more pain after the surgery than before. I'm pleased for you if it sorted your problem with no complication! I will always be wary though but hopefully will never have to make the decision. Best wishes...

PFKAAde profile image
PFKAAde in reply to hawker955

The first surgery was amazingly successful and the day after I could move my legs and toes (almost) normally again. Second time (a couple of months later) — not so much. Both surgeries were emergency and done the day I saw the surgeon (much to the annoyance of the people who were cancelled to make room!). Still, I’d have happily swapped places with them... for

A lot of the problem was muscle loss, and three years of hard work in the gym hasn’t recovered all of it, although some bits are good! 💪

There is permanent damage, but the surgeon thought I’d end up in a wheelchair, so by that measure I’m very pleased. Compared to ‘before’, not so pleased.

🙏🏻

Shalf profile image
Shalf in reply to happytulip

It was the teenage years and horrendous PMT pains when Paracetamol became my friend. It was no placebo, it definitely relieved tummy and breast pains.

PFKAAde profile image
PFKAAde in reply to Shalf

I will have to defer to your greater experience of that specific use!

Glad it works for you.

🙏🏻

juneann profile image
juneann

I do think Paracetamol has a place on our medicine shelf alongside Nsaids, like anything over used it can become ineffective. I tend to take one Paracetamol and one Ibuprofen which work well together. We can read every report and spend our days worrying, but without a suitable alternative and if used sensibly they can provide such relief of chronic pain. Some drugs like Paracetamol can be over used and although long term use of Ibuprofen is not advised it does need to be taken regularly to be effective and not just 'as and when'.

PFKAAde profile image
PFKAAde in reply to juneann

Indeed, ibuprofen has its own issues, but I find it to be a better painkiller that paracetamol for pretty much everything (that I use it for).

But then my GP insists I take lansoprazole with it and for that reason, I’m out! Although again if I was in a flare currently I would still take whatever it took to enable me to function.

🙏🏻

Simba1992 profile image
Simba1992

A good one P👍🏻

We have so much pain and discomfort in Ra.We are offered so many different meds to take away different symptoms and we are often happy to find relief, even when just temporary,without relizing that these meds often make the underlying inflammatory state worse. What we perhaps seldom do is weigh the benefits and adverse effects of the meds. If there is any way to minimize doses or meds it's always a good thing. I have been able to eliminate all pain meds without RA meds. I do have pain but very seldom reaches a level where an alcaselzer wouldn't help.

PFKAAde profile image
PFKAAde in reply to Simba1992

Yes, and when we are in full-on flare mode then give. Me. The. Drugs.

I guess I’m more thinking of people in a similar position to myself. I had been on various meds for so long that I just found myself taking them without questioning it too much.

When I had some bad experiences with various drugs (pregabalin, amitriptyline, morphine etc) I decided to do an ‘audit’ of my regime and after a testing few years am now on Humira and a (slowly) decreasing dose of dihydrocodeine (which is more to do with how difficult it is to get off than pain now). Once I finally get off the dihydrocodeine I will be happy.

And I’m certain that if I had carried on taking them all, they would still be prescribing them all and I would be taking things that, it turns out — I don’t actually ‘need’.

My GP was amazed that I had voluntarily reduced the dose of morphine I was on by a factor of 10. Which makes me think that not many people do just stop...

🙏🏻

Nanna71 profile image
Nanna71

I had to look up what that drug is and here in Canada we call it acetaminophen. This drug is used extensively for mild pain, fever reducer, etc. etc. It is about as useless as a, well, I won't say that. It must be making someone a wheelbarrow load of money for how it is promoted here. The pain it addresses is so minor I would not even consider it and just put up with the small irritation. This is my personal experience.

It has such terrible side effects that I wonder why anyone would use it? Here, they give it to children (parents do) like it was nothing. Which it exactly is. Big Pharma squashes the bad news though. Like I said, I think someone is getting rich off it. Why else would they promote such a loser of a drug.

For me, during the pain of RA onset, even morphine didn't touch the pain but I would not throw morphine under the bus like I would acetaminophen.😮

hawker955 profile image
hawker955 in reply to Nanna71

Pracetamol is an effective anti-pyretic, that is for bringing down a fever. Non-steroidals work on pain through blocking the inflammatory process and pain is one feature of inflammation. Paracetamol is not anti-inflammatory and controls pain at a central level, in the brain. I expect that is a profitable drug to sell on the grounds that it is cheap to produce and because it is sold in such high volumes, being an over-the counter rather than needing a prescription. from your doctor.

Steroids are not a pain-relieving drug, though being very potent at stopping inflammation they indirectly reduce pain. Note that It might be highly dangerous to take NSAIDs at the same time as steroids.

PFKAAde profile image
PFKAAde in reply to hawker955

Actually that is one thing (bringing down temp) paracetamol is effective for — particularly in children.

Good point 👍

PFKAAde profile image
PFKAAde

Yes I think that is one of my problems with it, that the pain that it may (or may not) be useful for tends to be mild pain, and for mild pain I don’t bother or else I’d take something everyday.

Having taken a very high dose of morphine due to back issues alongside diclofenac, I can state with 100% certainty that NSAIDS are more effective than morphine for RA inflammatory pain. For me that is, in case anyone finds that not to be the case.

Children’s paracetamol (common brand name Calpol here) is given to children very commonly, and there is eveidence that isn’t a good thing. Also by dissolving it in a sweet syrup and flavouring it like strawberry also seems to inflate the price by a few hundred percent...

Not sure anyone is getting rich of the generic paracetamol / acetaminophen as you can buy it for 25p a packet in the UK, although brand name formulations are much more expensive (for the same thing!).

🙏🏻

juneann profile image
juneann

Ibuprofen isn't necessarily better at getting on top of RA pain over Paracetamol, the difference is it deals with inflammation which is causing the pain. If my inflammation is extremely low I need no painkillers, unless existing damage is causing pain .

PFKAAde profile image
PFKAAde in reply to juneann

I’d have said that it was precisely the anti-inflammatory aspect of ibuprofen that makes it better than paracetamol for RA pain...

Paracetamol does nothing for me if my joints are swollen, NSAIDs do - diclofenac is more effective than ibuprofen (and worse for you), but they are all better than paracetamol IMHO.

🙏🏻

Shalf profile image
Shalf in reply to PFKAAde

Agree!

Hezekiah profile image
Hezekiah

Interesting thread, PFKAAde. I can't really comment on the value of paracetamol, or not for that matter. But I did find the excursion/sidetrack into back pain, surgery, etc, fascinating.

I wonder could you say any more about how you came to have/develop prolapsed discs (age, health, lifestyle, etc) and about the "emergency" nature of the first operation, as I was not aware of this condition giving rise to emergency surgery. It's well off topic though, so don't worry if you don't wish to go there.

I took a right cocktail of drugs when I suffered a very bad bout in 2011, so much so that I manged them using a spreadsheet for 3 months or so. Sadly I can't find said spreadsheet at present, and time has blissfully wiped the drug names from my memory. One was a muscle relaxant certainly, another a strong pain killer, and towards the end of it all, a well known heating type gel which I rubbed into my back which seemed to give good relief. At a guess it may well have been Ibuprofen gel. Strangely the gel seemed to work really well although I had been taking Ibuprofen tablets previously and they seemed to have no effect.

I did a lot of investigation into back pain and its causes at that time, and have a fair bit of documentation about it in my "Back to health" folder, although not the aforementioned drugs spreadsheet sadly.

I trace my first back pain back 40 years ago when I was in my galley kitchen with a largish kitten on my neck/shoulders acting as a neck warmer (we've all done this, haven't we?) when I sneezed. Shouldn't have sneezed, or shouldn't have been wearing the kitten.

PFKAAde profile image
PFKAAde in reply to Hezekiah

Hi Hezekiah

You sound far more organised than me, but I wish sometimes I had kept a spreadsheet over the years because things do get a bit blurred I am finding.

I can’t get a straight answer about my back. The best I can come up with is that my left knee was progressively becoming more deformed (a vagus deformity I believe it is called), for which the only solution was a total knee replacement. I was told I was ‘too young’ (was early 40’s when it started) and to put up with it for as long as I could. As I looked after my 2 pre-school children at the time, I needed to be able to move around. Therefore I ended up on quite a large cocktail of drugs.

I had also been on other medication for over 15 years due to the RA, so long-term multiple medications. Coupled with walking with a lean towards one side. This seemed to start off the initial symptoms (drop-foot, 1 slipped disc, sciatic pain that subsided) — and then I had anTKR.

The op was a total success and I was up and about in no time. However I was suddenly upright with no lean, and my discs had adjusted to me walking with a slight lean. Within 12 months of having my knee done I had (approximately) 8 discs go.

They’re the only reasons I or any doctor prepared to guess has ever come up with. A combination of mechanical stress and long-term medication side-effect. Some drugs, for example, affect calcium absorption which in turn can affect fracture risk. There are many other effects of long-term med use that are poorly understood, so it’s not that surprising that a doctor can’t say that it is the cause, but my rheumatologist thought that the most likely scenario.

Hope that answers your question.

🙏🏻

Hezekiah profile image
Hezekiah in reply to PFKAAde

Yep, that answers my question very well, thanks.

It is unfortunate that your TKR which in theory you expected to improve things had the knock on effect of worsening the situation for your spine. I wonder if the health services ever anticipate that kind of outcome, and whether they could take any steps to manage or reduce it?

As regards record keeping, I can't remember why I did it. It may just have been that I wanted to keep track of every pill I was taking so I didn't overdo or underdo them. Or that it said 4 hours between doses so I wanted to be precise to the minute, as the pain was such that I couldn't wait to take the next tablet. Not organised though, as I can't find the file now. However it didn't give me a taste for investigating medical conditions via the internet, and trying to better understand how to get and stay healthy. It was also interesting in terms of interactions with doctors, physios, work, etc and I became aware that the quality of these interactions is extremely important and must be properly managed by the patient (me) in order to get the best result (for me). I also felt that the best result for me was (almost always) the best result for everyone. So, if I got healthy again, I wouldn't be wasting/spending my doctor's time so they can use that time to deal with trying to help someone else to get better.

PFKAAde profile image
PFKAAde in reply to Hezekiah

Absolutely, learning how to ‘manage’ your medical team is one of the skills that we suddenly have to acquire in order to ensure the best outcomes all around.

It is a good point about that situation being managed in some way, but the fact that it seemed to surprise / confuse most of the doctors I have seen makes me think it isn’t all that common. Maybe I had some disposition towards disc problems, maybe it was largely the medications, maybe being younger and running around after kids I was more active and therefore had more mechanical stresses than the ‘typical’ person waiting for a TKR, coupled with having to wait for 5 years due to my age.

I don’t think I will ever have any definite answers, but I seem to regularly confuse the docs (like when three metatarsals snapped in my foot one morning for no apparent reason - still got the kids to school!).

Spontaneous idiopathic fractures, slipping discs, auto-fusing vertebrae, sero-negative RA with inflammatory markers “as high as I’ve ever seen” said my rheumy and major erosions (and despite being ‘in remission’ still lead to a TKR). Finding the link between these things is beyond my medical knowledge, and seemingly that of my doctors — at least as far as they’ll admit!

And other than not waiting as long (which didn’t seem to be an option for me) I’m not sure what they could do, although I wish I’d started seeing a physical therapist before I had the TKR — so maybe I’ve answered my own question.

🙏🏻

Hezekiah profile image
Hezekiah in reply to PFKAAde

You did well to get your kids to school!

It does seem that you are capable of unusual things - let's hope your doctors enjoy a challenge

rosie1928 profile image
rosie1928

Hi. I remember a GP suggesting I take just paracetamol for pain for RA and I told him I would be climbing the walls in pain. I'm an ex nurse and it's true that Panadol can be toxic and dangerous if more than the prescribed dose is taken. When I am in pain taking Paracetamol is akin to swallowing a sugar pill.

PFKAAde profile image
PFKAAde in reply to rosie1928

I hope you have a different GP these days!

rosie1928 profile image
rosie1928 in reply to PFKAAde

I certainly do! How can some doctors be so ignorant?

PFKAAde profile image
PFKAAde in reply to rosie1928

Way back in the mists of time, when I was new to the world of RA and every joint in my body was swollen, my GP told me that he too had ‘arthritis’ and the answer was to have a really hot shower in the morning.

I’ve never looked back since and never had a need for expensive and risky medication, all I ever needed was a hot shower! 🚿

🙏🏻

Shalf profile image
Shalf in reply to rosie1928

That's atrocious Rosie! Hope he takes paracetamol for his ignorance! Not that it will help! 😂

Hope he gets struck off for being stupid!

rosie1928 profile image
rosie1928 in reply to Shalf

Wait until he ages and gets aches and pains. Nothing like walking a mile in someone else's shoes.

Shalf profile image
Shalf in reply to rosie1928

Oh is he just a wanna be professor? Paracetamol for RA! My word! Surely he's not that stupid. Maybe trying to impress the NHS saving fortunes!

What a Bampot!

Mmrr profile image
Mmrr in reply to rosie1928

What a choob ( I've wanted to use this word again).

He most probably doesn't know what RA is, the level of ignorance in those who are meant to look after us medically is scandalous.

rosie1928 profile image
rosie1928 in reply to Mmrr

I did try it and I was climbing the walls. lol

rosie1928 profile image
rosie1928 in reply to rosie1928

What is a choob. New word to me.

Mmrr profile image
Mmrr in reply to rosie1928

an idiot (choob = tube) 🤣

Shalf profile image
Shalf in reply to rosie1928

😂

rosie1928 profile image
rosie1928 in reply to Mmrr

What is choob. New word to me.

The ONLY EFFECTIVE pain relief for RA sufferers was Co-proxamol! Unfortunately MHRA BANNED THIS REMARKABLE DRUG for additional monetary gain!

Search Co-proxamol on ‘What do They Know’ website.

mumsyme profile image
mumsyme

As a subjective opinion, paracetamol does not touch the sides when I'm in pain, the drug is useless. Also, back in 2004, I remember the matron in a nursing home I worked in told me that it only takes 4 paracetamol to potentially kill someone.

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