Movers and Shakers: Side Effects
You get diagnosed with a degenerative disease for which there is no cure, you get prescribed drugs which might mask the symptoms but won’t slow the progress of the disease, and then you get told those drugs could turn you into a compulsive gambler or a sex fiend - welcome to Parkinson’s.
This week’s episode of Movers and Shakers is all about the side effects of the drugs we are prescribed for our condition. It is not the cheeriest subject but, never fear, we get the odd laugh out of it - and we would doubtless have got more if the most positive member of our gang had been in the pub.
But then we were glad Paul Mayhew-Archer was absent because, as he tells us in another of his audio diaries, the reason is he has good news - his DBS operation has happened and he’s in good shape at home. He will be “switched on” early in January and is optimistic that the electrodes in his brain will work wonders.
But back to the other main form of treatment for Parkinson’s, the drugs and their side-effects. Gillian Lacey-Solymar starts by reading out the warning notice in a packet of one popular dopamine-boosting drug Madopar - the potential side-effects include depression, hallucination, hoarseness, difficulty swallowing, abdominal pain, and three different kinds of vomiting.
Yet it is with the so-called dopamine agonists that the warnings really get dramatic with patients told to look out for signs of compulsive and impulsive behaviour. When I went on one of these drugs Ropinirole my consultant warned me that it could turn me into a spendthrift or a sex maniac. Judge (retired) Nicholas Mostyn tells us that at his first appointment with Professor Ray Chaudhuri he was taken aback to be asked “are you watching pornography at night"?”
Most of us have had these kind of warnings but fortunately side-effects of these and other drugs have been rare for us so far. The judge does however relate what happened when the Professor briefly doubled his dose of an agonist from 1.57 mg to 3.2 mg: “It is fair to say, although I'm not getting into any details, I did have some rather disturbing thoughts as a result, which I immediately reported to the professor who took me down to 1.57 nd the thoughts went away as quickly as they came.”
Jeremy Paxman once again tells us that he sees no effects of his drugs - but the positive side of that is he suffers no side effects either.
What we found difficult to assess was the level of risk associated with these drugs - the likelihood of these obsessive compulsive side effects seemed to range from less than 1% to 15%. But when I read the leaflet inside my packet of Ropinirole it said of the odds on behavioural side effects “not known (frequency cannot be estimated from the available data.)”
Our expert guest Professor Alastair Noyce was not too reassuring on this front, explaining that even 15% may be a conservative estimate of the risk:”The way that this information is gleaned from people on dopamine agonists is by asking them whether they have any of those symptoms through self report questionnaires. And of course, people downplay that and say, no, no, not doing any of that.”
Asked about the science behind the behavioural side-effects, he explained that bombarding the brain with extra dopamine may have unintended consequences.
“The effect or the manifestation of low dopamine that we see most visibly in Parkinson's is a reduction or a paucity of movement. And so when we start treating we're trying to improve the movement. There are other pathways in the brain, that dopamine contributes to - reward pathways, pathways that if they're overstimulated may lead to impulsivity.”
Mind you, when the professor started talking of “excessive hobbying” as another example of compulsive behaviour we wondered whether building matchstick models of the Eiffel Tower at 3am was really such a bad thing. Mark Mardell explained how his wife Jo had become concerned about his excessive use of his laptop and when she told his doctor he had halved his dose of Ropinirole.
“The laptop is the window to the world, “ Mark told her. “I listen to music on it, I write on it, I research Parkinson's, I research news stories, I do everything on it. And, I said, that really hasn't changed at all since the drug.”
But just how serious the side-effects of Parkinson’s can be becomes clear when Gillian plays us an interview with a man who took too high a dose of Madopar when he caught Covid during the pandemic. “Martin” - not his real name - described what happened: “I never fully recovered from that moment. The ‘ons’ and ‘offs’ that I've been experiencing became very extreme indeed, from extremely manic activity through to a kind of brain draining sensation of losing all the liquid from my brain, and me collapsing to the floor.”
He ended up iin hospital and then a care home for seven weeks, learning later that because he had taken too large a dose of the drug he had been suffering psychosis. Professor Noyce says it is notable that Martin’s problems started when he caught an infection: “If you've had Parkinson's for several years, then you can be very susceptible and vulnerable to the effects of infection. They can make your medication not work so well - and therefore you need to increase the doses - or they can make every dose of medication much more potent.”
But the problem for us is uncertainty - when we notice something going wrong, is it the side-effects of the drugs, is it another Parkinson’s symptom or is it just that, in the words of my wife Diane, that we are getting a bit old and crumbly? And where do we turn if we are worried about our drugs and it is six months until we next see our consultant?
Alastair Noyce says this highlights a problem with the whole approach to treating Parkinson’s:”This old model of appointments every six months doesn't necessarily tie in with when things are most needed.” Every six months? More like once a year if you are lucky I hear many of you cry.
The answer, we conclude, is far more Parkinson’s nurses, qualified people with whom we can raise issues about the drugs without necessarily needing to see the doctor. More food for thought for the Parkinson’s Charter which Gillian is working on for a future episode. Please send us your thoughts on this and anything else to feedback@moversandshakerspodcast.com
We also discussed the striking absence of litigation about the side-effects of the drugs. It was suggested that there had been many “class actions” (one of those expressions so beloved of non-lawyers but known here rather more prosaically as group litigation). But researches revealed no such litigation here or even in the land of mad litigation, the USA. We concluded that, unlike the opioid scandal, the manufacturers and clinicians had at all times been completely transparent about the risks and that we have taken, and continue to take, the drugs with our eyes wide open.
Another great and informative podcast. Constipation -A Side effect of drugs or PD?