The Nocebo effect

[Scottishlad]

I have been thinking about this since seeing a piece on TV recently, I think it was the One Show.

Trial subjects were given a sugar pill and told that the might suffer a range of side effects. Obviously the sugar pill could not cause any side effects. A significant number of the people in the trial reported getting some of the side effects they had been told might occur.

There is so much attention paid to the potential side effects about many of the RA treatments. I wonder if some people unconsciously report side effects because they have been told they might experience them. The side effects will feel real to them.

Do we Google too much? Do the patient information sheets list too many side effects?

[VeronicaF]

I have cut out sugar, it makes no difference in me, but some it has on here cutting out sugar, its much healthier to have less sugar in your diet

[Scottishlad in reply to VeronicaF]

I agree we all should try to reduce our sugar intake.

My post is not about sugar but about people reporting sides effects that have been suggested to them but don't actually exist.

[nomoreheels in reply to VeronicaF]

A sugar pill is a placebo Veronica (a tablet that isn't real medicine but pretending to be), given to half the people in trials who are told it's proper medicine.

[AgedCrone]

How many times have people had a wonderful nights sleep and thought what a wonderful sleeping pill they had taken-until they found the pill on the bedside table ........ they had believed it would work so it worked !

[helixhelix]

I've read quite a few research papers about it, and do believe that it can be a factor for us. My first rheumy nurse said that in her experience (17 years) the people who did best were the ones that didn't overthink things and just got on with it. I mentioned that I was a bit worried about MTX and she told me not to think like that but just take them and not even consider that I might have side effects. I was fine.

[AgedCrone in reply to helixhelix]

Right on HH....I have obviously investigated all meds I have been given,& discussed them with my rheumy.....but once I decided I was going to take them, I swallowed them & got on with my life.

Obviously those that disagreed with me I stopped taking but only after consultation with my doctors & reasoning it out.

I think over thinking is a problem as there are many questions here on what evil side effects to ‘expect.’

Rather we should be asking what benefits will we get!

[Scottishlad]

I went onto my medications without thinking too much about side effects or doing too much research. I have only ever had minor problems mainly mouth sores when the MTX dose was at the maximum. However if I had a problem I would have done the research to check it out. Like the time a developed a rash rather like nappy rash while on penicillin, on Google I found a rare side effect called baboon syndrome. I can tell you that sitting down was rather uncomfortable. No more penicillin for me.

[Kerensa21]

Don’t see how a bunch of random, healthy people on the one show equates to people with a serious autoimmune disease. How many in this ‘trial’ & what’s a significant number?

We take some pretty scary drugs not sugar pills (that’s why side effects/risks are listed because some may be dangerous & you need to be aware).

Knowledge is power imho & I like to know the potential effects and risks of anything I’m putting into my body so I can make an informed decision about it. This does not mean I then imagine them.

Personally I found information about the disease on diagnosis somewhat limited which may be why people research/google it for themselves. Like to think I’m intelligent enough to be able to tell if that info is reliable/rigorously researched but who knows? People with RD respond differently to different meds too & it may be that compliant patients are easier to deal with. Again who knows but all sounds a bit anecdotal to me.

[helixhelix in reply to Kerensa21]

It's not anecdotal, but serious validated research using double blind studies. Exactly the same that has shown that there is a placebo effect. Which is not to say that side effects don't exist, and I agree everyone should be aware and understand the drugs being offered.

However our minds are very powerful, so being aware that you could be influenced is as important as being aware of all the potential side effects.

[Kerensa21 in reply to helixhelix]

Yes but that’s not what was posted; do you have a link as there is also some criticism of both placebo and nocebo effects when applied to real patients. Interesting post & bound to divide opinion I think so I will shut up now & see what others think 😉

[helixhelix in reply to Kerensa21]

Here's one paper that looks at a handful of studies. Not sure what you mean about difference when applied to real patients as a lot of studies are based on patient experiences in real situations?

ncbi.nlm.nih.gov/pmc/articl...

What I took from the discussion in this paper is not that you should keep things from people, or not disclose information, but that there should be more thought about how it is presented to minimise any possible effect.

[Kerensa21 in reply to helixhelix]

There’s one in the Conclusion to this to placebo effect (small sample, response to daily mail!) that warned about applying to real life situations & pain etc

nhs.uk/news/medication/the-...

Can’t find nocebo yet but seen it somewhere: i’ll read yours if you read mine 🤗 obviously haven’t read yours yet but

Original post referred to academic discussion of whether to inform patients of side effects, which I find a bit paternalistic tbh. I’m already used to having to find out everything for myself (yes I know they’re busy). It also smacked a bit of patients imagining symptoms too to me.

Second one like this I’ve heard this week (radio 4 ‘expert’ with flawed reasoning insisting CBT as cure for ME/CFS: it’s rolled out everywhere because it’s cheap & not without critics too)

[AgedCrone in reply to Kerensa21]

The One Show trial might have been small, but before drugs like those we take are licenced to be prescribed to the general public they are thoroughly tested in every way including placebo trials that sometimes go on for years. They are not only tested on those with the disease the pill is going to treat but on healthy people as well.

That is why pharmaceutical companies try to charge so much money for their drugs because they have put so much time & skill into the research and development of that drug.

Professional placebo trials have proved what the One Show was trying to illustrate in an entertaining way......it was not suggesting it was a serious trial.

[Scottishlad]

This was a serious piece also reported on the radio. There is some academic discussion on the effects of warning patients about every side effect. Obviously we need to be warned about things which can make you very ill. But the kind of thing you see now is "less than 1 in a thousand may report a headache". Often there is no way prove the cause of the "side effect".

I do not deny that the drugs we take can have serious side effects. Because I take MTX I need regular blood tests to check on my liver and blood.

[AgedCrone in reply to Scottishlad]

But you must admit there are more questions asked here on about what dire side effects to expect rather that what benefits to expect.

I'm sure the majkrity of the general public don’t even unfold the PIL in their prescribed medicines....unless someone asks ‘Does it have side effects’?

[nomoreheels]

I'm sure it's possible you can imagine side effects if told what they are. It's what we used to call autosuggestion, tell someone who's susceptible something can happen & it mostly will. It's something I've questioned (to myself) many times when replying to someone concerned about them, & it's usually someone who has been googling. I think the one med that this happens with most is methotrexate, not only because it's often the first med prescribed on diagnosis but those who haven't had need of specialist meds are concerned that it was initially developed to use as chemotherapy. Understandably it can be alarming to the naïve, I'm not saying otherwise. Those of us who aren't new to it all know that when used in rheumatology in much lower doses & less frequently it is a DMARD... the side effects lessen the lower the dose but even so can be problematic at best. Also side effects are discussed so often here so that can't help either. Obviously some are genuine but if it were possible it would be interesting to see how many aren't.

Sometimes common sense flies out of the window with a diagnosis & those who otherwise would be accepting of things become concerned about everything. It's human nature. That said I was happy to take anything my Consultant considered right because I knew I needed help as I was familiar with RD. For others though it's a big deal & if little information is given there's a natural need to know. That's when the issue arises, they google the med, or the disease itself, & see all the bad & none of the good.

[Kerensa21 in reply to nomoreheels]

I’m not newly diagnosed nor am I on methotrexate now but biologics & there are risks you need to be aware of. I am pleased methotrexate works for you but that doesn’t mean others don’t have side effects: many are listed on the yellow card scheme site. As adults I’m sure we can all make our own choices on the information given as long as we do still have access to that information; don’t like the suggestion that some of that should not be disclosed.

[nomoreheels in reply to Kerensa21]

I'm not disputing we should be made aware of side effects & risks though I do believe judgment needs to be used as to how much a patient can take at a time. Information overload for someone who's already scared following a diagnosis isn't always helpful, we've seen it here many times. I am fully aware there's the potential for side effects with MTX, it's no different from any other med excepting it's two uses. This is why I specified it. What I do think though is that there are those who 'believe' or 'tell porkies' that the side effects are worse than they actually are to come off MTX for whatever reason. This I've found because having tried other DMARDs & progressed to biologics & coprescribed MTX again the side effects appear to no longer pose a problem. Maybe this is because further down the line they've had experience of other meds & appreciate the necessity to have a combination of a biologic & MTX for it to be more effective than the biologic alone. Of course there are those who genuinely have intolerable side effects, again I'm not disputing that.

[Hezekiah in reply to nomoreheels]

I'm glad you are not disputing that, nomoreheels, as I am happy to believe that my son suffered substantially while on MTX. He developed an antipathy to the yellow colour of the fluid in the injection mechanisms, which the rheumatologist said can happen, on account of the really sh***ty time he suffered after each injection.

[nomoreheels in reply to Hezekiah]

I've no doubt this can happen & I'm sorry your son was one to who it had. We had a member not long ago report that she had been on MTX a good while but a sickening fear remained of injecting her MTX, nothing she'd tried was helping the nausea & she'd tried lots. Her boyfriend had taken to injecting her because of feeling so sick just looking at the liquid. She'd forgotten it was MTX day but boyfriend hadn't & she was settling down in bed to go to sleep that evening, she was awake enough to know but he injected her. She had no sickness, had a good nights sleep & woke feeling fine.

[Hidden in reply to Hezekiah]

Mtx made me so nauseated, even the thought of that gross yellow makes me sick to my stomach. I had an awful time on it (recently went off, thank goodness... didn't help me one bit). In that manner, I quite relate to your son.

[Hezekiah in reply to Hidden]

Very well said, sadslytherin, it sounds as if you suffered in much the same way as he did. I wonder what percentage of folks are affected by MTX in this way? Not much fun when the treatment makes you feel so poorly.

[Hidden in reply to Hezekiah]

Truth!

[AgedCrone in reply to Hezekiah]

It’s not only methotrexate that has these terrible side-effects two or three other Dmards had terrible side-effects for me-but I swallowed Methotrexate every week for 7 years & had no nasty side

effects at all.... in fact the only side-effect I can remember is that my hair started to go curly - unfortunately that didn’t last .

I think as nmh has already said, Mtx seems to be the drug most often mentioned when people report side-effects is because it is probably the most often prescribed drug for the newly diagnosed & as it has been around for 30 or 40 years it is probably one of the most successful drugs for RA. Although unfortunately not for everybody.

But when you are newly diagnosed and put on Mtx you might look everywhere for information on its side effects, and if you keep seeing reports on how badly it does affect some people, you are going to build up a picture in your mind that it might happen to you.

I wonder if there is info somewhere on the % of people who do suffer severe side effects on each Dmard?

[Kerensa21 in reply to nomoreheels]

Really? I found the assessments for biologics pretty rigorous & thorough & don’t believe people lie to get on them. Coming off MTX & other dmard in interim was no picnic either: relief from vile side effects but huge flare. Bios are not symptom free for everyone nor risk free but then we are all different. Going to have to agree to differ on this one I think.

[nomoreheels in reply to Kerensa21]

No, you're misunderstanding. I don't believe people lie to get on biologics, quite the opposite. By the time biologics are considered necessary people have been on other meds, DMARDs, necessity is no longer the same issue. I hope this clears what I'm attempting to say. In a similar vein to this article from NRAS I suppose nras.org.uk/keep-taking-the...

[Kerensa21 in reply to nomoreheels]

Right, sorry but it read like that to me 😊

PS I did stick it out for a year so was ‘adherent’ but miserable on copious drugs to counteract side defects 😖

[nomoreheels in reply to Kerensa21]

Maybe I didn't explain well enough, but we are in agreement!

I think a year could be considered more than adherent. If it's misery making it's just not worth the taking. I've been fortunate, there have only been a couple of meds I've really struggled on but like you I gave them long enough before I eventually said enough, sulfasalazine being one. MTX at higher than 20mg is a no no for me, again fortunately at that & lower doses I can cope. It is becoming a bit more problematic though so quite how long I'll remain on it at 20mg who knows.

[Kerensa21 in reply to nomoreheels]

Didn’t cope on 20/25 myself, you have my sympathies 😉 mind you benepali has started to cause sleep issues, mild nausea lately after 6 months of being fine so I do wonder if it’s disease too?? or breaking through, not a happy 🐇😐

[AgedCrone in reply to nomoreheels]

Another problem of course is here we are prescribed Mtx for RA...but many of us have other conditions as well...& that can make a big difference - it can make understanding why Mtx is good for you, but not for me....very hard to grasp.

That is why taking your doctor’s advice, when you want Drug X , because you have heard how well someone has reacted to it, and he wants to give you Drug Y....all doctors spend a long time learning which drugs help which patient, & as we are all different, we all react differently,

No way can I take Prednisolone...but for hundreds on here it is a life line. I have received some very strange looks from doctors who have glibly said ‘you can just take a short course of Pred ‘ & I have refused...but the side effects it has on me are certainly worse than the pain it is supposed to relieve.

[Pawz4me]

I'm a huge believer in both the nocebo and placebo effects. These are well studied phenomena. It has zero to do with how intelligent one is or isn't. The human brain is incredible, and the nocebo/placebo effect is really kind of a side effect of having a human brain. That said, my general approach is to do enough homework that I know the pros/cons of any medication. But once I decide to take it I try to forget about those side effects and just get on with things. But if something weird does pop up I've got enough info tucked away in the back drawer of my mind that I'll hopefully recognize a harmful side effect for what it is, and before it becomes too troublesome. Does all that make me immune to the nocebo (or placebo) effect? No, not at all. But knowing those two effects exist, what they are and what they can cause is a good bit of knowledge for everyone to have.

[Scottishlad in reply to Pawz4me]

Pawz4me your comments are very much in line with my thoughts.

Some people do suffer real side effects from drugs. I have had cases myself, two antibiotic reactions and mouth sores from MTX. In my case I did not know about them before being affected.

Perhaps there needs to be some thought by scientists and regulators about how much information goes on the patient information leaflets. There are side effects we must be told about because they can be serious or life threatening. The auto-suggestion effect is involuntary and does not reflect on the person affected.

[AgedCrone in reply to Pawz4me]

Tbh, if a placebo works - because the patient thinks it will & it’s just a harmless pill....why not?

Obviously not for a life threatening disease, but we all know people who read Dr Google & believe they have what they Googled ....but in fact they haven’t, because nine times out of ten the small print is missing on Dr Google....where is the harm in giving them a blue Smartie...they are happy are ‘cured’ & continue a healthy, happy life. Surely that is win,win & better than having someone devote their life looking to cure something that doesn’t exist?

Please don’t start a lengthy thread on medical ethics...it’s just a thought!