When are side effects of medication unacceptable?
Trying to...figure out the line. Often alone.
Do you know that bit in the doctor’s surgery where they list the potential side effects of a drug they are prescribing and then reassure you that there is a very small risk of whatever grim thing might happen to you actually happening? And if it does - not to worry as “it should pass”? And to make sure you should read the leaflet. And see how you go?
That dynamic and usually pretty imprecise exchange is what I want to focus on today.
In the last 18 months I have tried the Mirena coil, four different combined contraceptive pills and a daily high dose of bio-identical progesterone all in a bid to dampen down my endometriosis and adenomyosis. And live a better quality of life. All of these doctor-guided experiments have ended in dismal failure and with my confidence in medical care for my conditions on the floor. And me on my knees.
But let’s park that. It is something to which I will properly return. I raise it now as I am woefully familiar with doctors, as well-meaning as they might be, telling me to “wait it out”; "see how you go”; “it should pass” and my favourite: “that doesn’t usually happen” or “I have never seen that before”.
With sadness and frustration I accept that I have two diseases no one knows how to cure or treat. Everything is guesswork and the least worst option. But it’s the space of knowing what’s tolerable and what side effects you should and shouldn’t have to cope with that doctors, even with illnesses about which scant is known, can do much better on. Or drug companies or someone in the middle - with intimate knowledge on the drug you are being given, could improve. Is it a pharmacist? I simply don’t know. And that’s the point.
How on earth are patients and especially unwell ones, meant to know what’s normal and what’s not? And what will “pass” and what won’t. And crucially - the biggest question of all - how long to wait? How many days, weeks or months should you give a drug that means you can’t lie down without the room spinning? I had that one with the contraceptive pills I was asked to take and try to tolerate - for weeks. It didn’t improve and I managed 6 weeks. It was torture, alongside other hellish symptoms - and coincided with our summer holidays. Parenting through that I would never recommend to anyone - especially not in extreme heat.
And while you navigate this limbo land, there is no expert to hold your hand. Not one when you really need it. Living in the spaces in between, sitting with yourself and family, is the hardest. You turn to unwell friends, forums, strangers and random websites. It’s properly awful.
But at least I knew what had caused my vile symptoms. I wasn’t just suddenly dizzy, sad or nauseous for no reason.
I share all this out of extreme sympathy and concern for the people suffering from Restless Leg Syndrome (RLS), which causes an irresistible urge to move, who have been prescribed a partial dopamine agonist drug to help them live better. But then, sometimes a whole year on from taking their meds, can find themselves acting very out of character and understandably do not link it back to a drug they started taking 12 months prior. So they just think it’s them and a new awful way of being.
And when I say out of character - I mean really out of character; losing their sense of risk and wanting to engage in dangerous sexual activity or suddenly start gambling large sums of money they do not have.
No one told these patients that their desire for “deviant sexual activity”, to quote one of the women who spoke to my journalist colleagues, Noel Titheradge and Curtis Lancaster, could be a risk of this treatment plan.
Another woman’s sudden lust for risk led her to turn to gambling - racking up debts of £80,000. Again she wasn’t told why and this change of behaviour could be linked back to medication for her RLS.
You can read their stories via this excellent and essential report here - a story that has got totally lost in the major world events of the last week. But to me this should be essential reading for everyone.
Can you imagine? Medicine that helps you live with a terrible set of symptoms, changes you to that degree.
It is utterly scandalous.
In the bid for health - a right we all should have - lives have been destroyed. And people had no fair warning.
All responses from the drug company GSK are in here but so are the vital contextualising points from professors familiar with this type of drug.
Patients need support from prescription onwards. Giving us a drug should be the first step of a hand-in-hand journey until we get to where we need to get to.
I also can’t stop thinking about Thomas Kingston - whose parents I interviewed a few weeks ago. He took his own life after he stopped taking anti-depressants they believe he never should have been prescribed. Now they want changes in prescription protocols when it comes to SSRIs.
Working where I do, I am respectful of doctors and very familiar with the strains of our ailing health system. But this isn’t working in the private sector either. I use both and can attest to it.
Patients are largely left alone to cope when the doctor has seen us. Something needs to change.
If we are expected to go off and cope with a drug we have never taken before - we need proper and better guidelines; things to look out for and clear deadlines for something not to be working by. And information about how to safely come off drugs too. If these things don’t exist or aren’t known - we also need to know that.
What happens in the spaces between medical appointments are our lives. And sometimes our sanity.
Thanks for writing this Emma. I have been struggling trying to get HRT right after a hysterectomy and oophorectomy. It's completely trial and error. Even 'specialists' seem to know very little. Helpfully every difficult symptom I have can be the result of too much oestrogen or too little oestrogen. It's so frustrating. As I heard on a podcast last week, women are owed decades of research. Hope you get there in the end. Knowing I'm not alone is helping me to carry on, so, much love for all your writing and advocacy work.
Patients are the experts in their own illness or condition. One of the most important medical skills is listening to the patient. Endometriosis is not taught much to medical undergraduates. I assume you have tried Relugolix combination therapy (Ryeqo)? I am sorry that you (and many other women) have had such a difficult time with this condition that is not well understood. The specialism most often consulted is gynaecology, which is a surgical discipline, but there are gynaecological endocrinologists; again I assume you have explored that pathway.
You are correct that too often a prescription is issued without a discussion about expected outcomes and possible ill effects, and what to do about them. Medicine is only beginning to understand the impact of differing genes on drug metabolism and efficacy and variation in patient responses to treatments.
As a retired GP, I regret your poor experiences. I used to teach consultation skills and techniques. Patients who have your experience and communication skills should be included in the curriculum of doctors in training, undergraduate and postgraduate. My own course used a “panel” of patients who were prepared to participate in teaching - often in video consultations where the group could gain valuable insight into how it feels to be the patient. I also have been patient - and experienced wonderful care and very poor care. All doctors are supposed to “reflect” on their practice to identify their learning needs in their annual appraisal. I am afraid that sometimes this process becomes a bureaucratic form filling exercise without much learning taking place.
Do give feedback to the clinicians who treat you. Your feedback might just improve things for future patients. I hope you find something that helps.