Parkinson's disease
Other medications for Parkinson’s disease and how to manage medication
Medication is the main treatment for Parkinson’s disease. It is used to try and increase the levels of dopamine in the brain or to mimic the action of dopamine on receptors in the brain. The two main types of drugs used levodopa (discussed in Levodopa) and dopamine agonists (discussed in Dopamine Receptor Agonists) All the other drugs are used occasionally alone but usually together with levodopa or a dopamine agonist. They reduce the breakdown either of levodopa in the general circulation before it reaches the brain, or of dopamine in the brain. However, they are only used with great caution because they have other possible effects in the body, some of which may be dangerous.
The MAO-B inhibitors (Monoamine-oxidase-B inhibitors such as rasagiline and selegiline) delay the breakdown of dopamine so helping to reduce the ‘end-of-dose’ deterioration for people who are taking a levodopa preparation. Selegiline may also be used on its own in the early stages of treatment when the body is still itself making reasonable amounts of dopamine. It is not recommended for use by people who have postural hypotension (a tendency to develop low blood pressure when they stand up) as it can make this worse. Andrew takes selegiline as part of a cocktail of drugs including levodopa (Madopar) a dopamine agonist (cabergoline), and another drug (lansoprazole) to counteract the hyperacidity which is a known side effect of selegiline. Penny was on ropinirole (a dopamine agonist) when she was prescribed rasagiline and she believes this helped to clear the ‘fog’ in her brain.
Amantadine (a glutamate antagonist), which Tom, Geraldine and Isabelle’s mother were all on, is a weak dopamine agonist which helps with dyskinesia.
Tom had forgotten to take his amantadine and was able to demonstrate its immediate effect on his dyskinesia.
Tom had forgotten to take his amantadine and was able to demonstrate its immediate effect on his dyskinesia.
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So that’s, so that the dyskinesia you, is, is caused by the medication?
It is yeah. It is.
And, and have you, is, is that the only medication you take?
No, no I take all sorts of other things. I take something called a COMT inhibitor, I take an agonist, I take amantadine which is a sort of strange thing which it seem to, seems to help with the dyskinesia. Actually thinking about it I haven’t taken it this morning which was pretty stupid Thank you for reminding me.
How quickly does it work?
I can’t believe I haven’t taken it stupid.
Would it, would it be worth your taking it now?
Probably would yeah, why don’t, why don’t we give it a go?
Shall we?
I can’t believe I haven’t done that.
Shall I get it for you?
So you’ve now taken some amantadine?
I have.
How, how soon do you think it might work?
It seems to have worked already doesn’t it?
It does, yeah.
Another group of drugs is called COMT inhibitors (catechol-O-methyltransferase such as tolcapone and entacapone). They prevent the breakdown of levodopa, so allowing more to reach the brain. Some of the people taking them said they made a great difference to their lives. Tolcapone was found to be more effective than entacapone but was at one time withdrawn because it caused liver damage in some people. It is now licensed for use in people who have not responded adequately to entacapone. But these people have to be very carefully monitored especially during the first year of its use.
Geraldine who has had PD for 18 years feels better than she has for years since tolcapone was added to her complicated drug regimens.
Geraldine who has had PD for 18 years feels better than she has for years since tolcapone was added to her complicated drug regimens.
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My consultant is brilliant. He’s a world expert in pharmacology and he has found me a combination of medication which at the moment works for me. I haven’t driven for five years and I’m now driving again. When I left my chief executive’s job at the charity I talked about, I thought I would never walk again let alone work again because I couldn’t walk and I’d lost all this weight. And I was having panic attacks every day but with the introduction of tolcapone (Geraldine changed to this from entacapone) to mediate between the levodopa and ropinirole overnight I changed, you know. That’s what’s so bewildering. You can just change overnight. And you have to believe then that it will work. You have to try and build the confidence that it won’t let you down.
Tolcapone which is banned in the United States and Canada because in the trials there three people I think died of liver failure. It can adversely affect the liver so I have my liver tested every two weeks to make sure that nothing is going awry there. So far so good and the consultant has told me that if I could but get my life together better there’s there is no reason why I shouldn’t manage on a combination of the drugs I’m on now for the rest of my life. I may never have to get to the point of thinking about brain surgery or chest implants or whatever. Although I’ve read about it all and I know what the choices are because I think you have to. You know, you’re fooling yourself if you don’t.
Before levodopa was discovered only anticholinergic drugs could be used to treat Parkinson’s disease. They were particularly effective in treating tremor and are still occasionally used in the early years of the disease if tremor is the only symptom. None of the people we interviewed had used these drugs.
Most people with Parkinson’s disease have at some point been warned (sometimes over dramatically) that prolonged use of levodopa may in time make the condition increasingly difficult to treat due to unwanted side effects. The arrival of the drugs described above have made this problem much less likely and less worrying because they allow much lower doses of levodopa to be used.
Many had found it very important to be able to discuss the drug regimens they started. Fiona was impressed that her husband’s consultant was prepared to listen to his concerns and share the decisions about medication. Geraldine had felt confident about accepting a new drug because she trusted her consultant completely.
Sharon's neurologist explained that she was buying time by starting with the smallest possible doses of medication.
Sharon's neurologist explained that she was buying time by starting with the smallest possible doses of medication.
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I didn’t find it difficult I wasn’t put on medication because I didn’t want to become reliant on medication. The consultant, if I’d insisted he would have given me medication straight away but I did understand that medication all that time, and I needed, I needed very much to take it at my own pace, just one bit at a time and check I understood and, and there is always the possibility that I could have managed without the medication. I needed time to, once I knew I’d got it, to check what it really felt like, to concentrate and to. Not a great one for taking medication all my life I’ve always been, I’ve always understood they had side effects so I’ve always, it’s a family motto, you stay away from medication if you can. You stay away from doctors and nurses and traffic wardens and social workers and so it is the way you’re brought up, isn’t it? And just occasionally, when I’m very wobbly, I just stop everything and buy myself some time to go back and just rethink it through and to, to be terribly sad and terribly tearful, and terribly overwhelmed. Because you, there’s no point in denying it. But you, you don’t want to live like that, do you? So I buy myself time to revisit it and then I heave a great sigh and think, “Oh right, now let’s get on with something else.”
Some people however felt that they did not have enough access to the neurologist in charge of their case. This made them anxious about introducing new drugs into their treatment regimen.
Many people admitted that they often forgot to take their medication (drugs) when they were supposed to. For people taking dopamine agonists the result of this was not dramatic. Philip remembers not being able to take any medication for two days and at the end just feeling a bit hung over. He understood that if he needed to get rid of his symptoms quickly Sinemet (co-careldopa - levodopa combined with carbidopa) was the drug which could do this. David, who knows that it is most important for him to take his medication exactly on time, has pill boxes with electric timers. Sharon sometimes waits for symptoms to return before she takes her next dose.
Before her Deep Brain Stimulation operation Elisabet often forgot to take her Sinemet but her symptoms soon reminded her.
Before her Deep Brain Stimulation operation Elisabet often forgot to take her Sinemet but her symptoms soon reminded her.
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I kept forgetting and I had to be reminded. I had clocks and I tried boxes and I tried various smart contraptions to remind me, because as long as the medication’s worked I didn’t think of the disease. And then I let too long time pass and then suddenly I would begin shaking and I had to wait until the medicine worked and I managed on several occasions to forget to take the medicine with me when we were going on holiday or out travelling. And I have a wonderfully patient husband who has helped me get levodopa in the most unlikely places, such as, Australia, Rome. So I know all about how you can get a prescription drug in various parts of the world. But that was again the denial I think. That when I packed I thought of everything apart from what I should have for my disease. I have never talked about it but that’s also part of the denial, and whether it is healthy or not, I cannot say. I had friends. I had one friend who insisted that I should become a patient like she was. She committed suicide a year ago and I think when disease becomes too overwhelming, it’s hard to bear. And it may be better to deny, I don’t know.
When Helen forgets her tablets she has to allow some time for the belated dose to kick in. The effects wear off sooner than they used to.
When Helen forgets her tablets she has to allow some time for the belated dose to kick in. The effects wear off sooner than they used to.
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I’m not very good at taking pills because I forget. Like yesterday we had a something happened in the morning which I had to go and deal with quickly and I hadn’t taken my tablet and I got to about nine you can feel. It’s a funny feeling comes on but I just had them in my handbag luckily so I just take them. Takes about fifteen, I just have to sit down for fifteen, fifteen minutes until it kicks in but I am not very good at taking them.
Do you actually do you forget quite a bit?
Yeah. I think I’m somebody who has always got a lot going on both in your mind and in my life and I yeah, I don’t put myself first very often. I don’t think in the morning I’m like, do you know what I mean. That’s my own but it’s not too bad because.
I mean does it often happen that you only take them because you suddenly get some symptoms?
Sometimes. I mean generally I have a routine in the morning. Monday to Friday is okay because the kids go, I do their lunches and so I tend to remember then, but I am better because now they wear off whereas before it didn’t wear off so it didn’t matter to you either for quite a while. Now, like you said, I suppose I do suddenly get a funny feeling and I think, “Oh gosh, I haven’t had it.” So yeah, probably that is true.
People who have been on medication for many years have usually reached a complex understanding of their symptoms and the various ways in which they can manipulate the effects of their drugs.
Alan realises he understands his regimen better than his consultant. He knows when to take a booster dose and that like Cinderella he has to be home by 10pm.
Alan realises he understands his regimen better than his consultant. He knows when to take a booster dose and that like Cinderella he has to be home by 10pm.
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The only main person that really gives you help is yourself and the carer. You have got to actually, with my tablets, I know more about how I take my tablets than my consultant. I tell him what I take and he says, “All right. Carry on then.” As long as it stops the tremors and stops the staggering around, the drunkenness - because it does unfortunately give the impression you are drunk with the mobility problem. I occasionally get strange looks in Tesco or that thinking I have been drinking that early in the morning and I am staggering around. Sometimes I say I wish I was, but it is unfortunate that [with] the Parkinson's, in between tablets creates problems. Just, you have to live with them. You don’t want to, but you have to.
And the tablets that you take. Which ones are you taking?
The prime factor is Madopar. And if you want to towards the end I will go and get the tablets and show you what they are. I take those four three times a day normally. If I am going out enjoying, if I am going out dancing then I take another boost. Whoever it is I go out with expects me to go home at 10 because that is when they all, that is when they usually finish. But it’s difficult. It is a very difficult illness to live with.
Karen worried about going out alone till she learnt to adjust the timing of her medication to suit her needs.
Karen worried about going out alone till she learnt to adjust the timing of her medication to suit her needs.
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I was lucky that although I’ve actually had the disease for ten years it hasn’t until recently really affected what we’ve been able to do. I find that we did a lot of walking and we’ve not been able to walk as far or I’ve become more tired. I did lose a lot of confidence with going out with friends and worried that I wouldn’t be able to walk so far, so tended to decide not to do it. I lost a lot of confidence going out shopping on my own and would always make sure I was with somebody. But I’m beginning to sort of learn that I can do it and I just have to make sure I time it right with my tablets and not do too much really.
A few people had immediate reactions after taking their tablets so they had to adjust the time of day that they took them. See 'Levodopa' and 'Dopamine receptor agonists'.
When Tom was first put on Sinemet he was impressed by the immediate improvement in his tremor. Over the years since his diagnosis in 1995 he has learnt to be very careful of his use of the drug and is now on a cocktail of medication (including levodopa, a dopamine agonist, a COMT inhibitor and amantadine) aimed either at prolonging the effect of the dopamine in the brain or counteracting the effects of levodopa in the body. To some extent he experiments for himself. One thing he does, which is not usual, is to leave off his medication at night in the hope that this will encourage his brain to continue to produce some dopamine. He has discovered the importance, at least for him, of avoiding meals and particularly large amounts of protein around the time he is taking his levodopa.
Tom describes why he feels it is appropriate to self-medicate and why he doesn't take any pills at night.
Tom describes why he feels it is appropriate to self-medicate and why he doesn't take any pills at night.
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Yeah I self-medicate completely and sometimes I have real problems with my chemist and my doctor’s surgery because they just contemplate ‘self-medication, ridiculous, you know, how can anyone self medicate?’ and because I have a brain.
So what are the kind of principles of your self-medication?
Well basically I mean I take a pill when I need one and I know when I need one and as long as I know that taking too many pills is bad for me because there’s, I’ll get the side effects so, so. It’s a case of, you know, I know what, no-one knows what’s best for me other than me because I know how my body feels at any particular time, I know that when I’m, when my, if I’ve eaten too much or if I’ve eaten any food and then, and then I, my drugs kick out then I know if I take another pill with a full stomach it’s not going to work. So I might as well wait for a, for another hour and a half and, and suffer from the tremor and then take a pill rather than try and take a pill immediately, but, but you see not, not everyone’s like that so.
Yeah the decision is based really on, on a, a sense, perhaps mistakenly that actually by freeing my body for, for eight, eight hours or so from any kinds of, any kind of pill that perhaps it will recover itself in some way without being stimulated or artificially. What I’m trying to do is get my brain to naturally produce the good things, the good dopamine and etcetera and, and actually I’ve found that, if I don’t take pills at night sometimes in the morning if I’ve taken, if I, everything is going right then I can get up and I can go on the rowing machine without, you know, first thing in the morning without actually having any pills and actually I know that by the time I do on the rowing machine exactly what sort of day, day I’m going to have. so I can actually, I absolutely know from the time that I do, because I do the same thing every, every morning on the rowing machine, what sort of day I’m going to have so that, so that, that way I can plan my day and so if I’ve got too much on, on, on that day and I’m, have a really bad, I do ten minutes on the rowing machine which is a bad time then I can cancel a few things and because I know that that’s.
Geraldine's complicated regimen allows her to lead a full and active life after 18 years with Parkinson's disease.
Geraldine's complicated regimen allows her to lead a full and active life after 18 years with Parkinson's disease.
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Well, the pills I take are levodopa in the form of Sinemet Plus and Sinemet continuous release at night. And each dose I take of the nine doses I take each day, has a Sinemet plus in it or the one Sinemet CR because that’s the common drug across the lot. Then at different times of the day I combine it with tolcapone three times a day, that’s the COMT inhibitor, ropinirole three times a day, that’s not necessarily at the same time as the tolcapone. But that depends. I vary the ropinirole depending on whether I feel the Sinemet is lasting because the life of the Sinemet is elongated by the ropinirole, makes it last longer. And so if I’m tireder I might front load the ropinirole for instance for the day. Instead of taking one in the morning I might take two and if I feel more tired I’ll take less later on.
So those are the main drugs but on top of that I take something called amantadine which is supposed to help you be less dyskinetic from the Sinemet. I am quite dyskinetic today, I’m not usually, but when I’m tired and down a bit then I’m dyskinetic. I take temazepam which is a sleeping pill but again I don’t take it if I don’t feel I need it because I don’t want to become addicted although I probably am. I take diazepam which is Valium which again I take if I feel particularly anxious. And with the Sinemet sometimes what I do is take half a half a Sinemet. If I need a little top up I do that. But what I must never do is exceed I must never have less than an hour between doses and I mustn’t exceed the total amount of what I’m supposed to take in the day. And depending on the circumstances I may front or back load particularly the ropinirole and the Sinemet.
Tom has a great interest in research into the treatment of Parkinson’s disease and has a thriving charity (The Cure Parkinson’s Trust) which raises money for this. John was concerned that not enough research was being done on the people who have Parkinson’s disease. Sharon on the other hand felt that she would be wary of entering the kind of trial where the medication you were given might be a placebo. When Angela entered a trial the medication she was given made her feel dreadful and she felt this delayed her getting appropriate treatment for her symptoms. She is still in the trial and she and her husband fill in questionnaires every 6 months. She believes that progress can come only from trials and would be willing to enter another one.
Geraldine feels that academic rivalries hinder the progress of research and that people with Parkinson's disease suffer as a result.
Geraldine feels that academic rivalries hinder the progress of research and that people with Parkinson's disease suffer as a result.
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And no common adherence to what is the best combination of pills because its’ manifests itself so differently in different people. And also I’m afraid because academics are trying to win Nobel prizes I think. You know, they don’t share research. They put their arms around their exercise books and say, “Don’t look at mine.” Viz. the embryo embryology debate recently. You know, it shouldn’t matter who does it. So to me, you know, I just want my life back again and yet it turns into great religious debates and academic competitions. And forget about the person who’s has it, you know, you sometimes feel like a rat in a maze. They drop pills into you and see what happens. They don’t know what’s going to happen. You don’t know what’s going to happen, you know. It’s not the kind of adventure you want to undertake too often.
Last reviewed May 2017.
Last updated May 2017.
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