Madopar, is there an alternative

I am 73 and have suffered with Parkinson’s for seven years. I live on my own with a cat that comes and goes!, and up until last year I was coping quite well, just a tremor in the left hand and a slowness of movement. This year I noticed everything was getting a problem, walking especially difficult and even basic housework resulted in getting breathless and a tremor now down in my left leg. For someone who enjoyed being self sufficient that is very depressing coupled with losing my sense of smell and taste two years ago, there is not much to look forward to.

I have been taking Madopar 4 times a day with a slow release one at night but the “OFF” time was getting longer when I came across a drug called Opicapone on the Michael J Fox website. I emailed my Parkinson’s nurse to see if I could try it and my Neurologist said it was difficult to get a regular supply and suggested a drug called Stalevo. Well that is as far as that idea went, and his alternative was to increase the Madopar.

I have fallen out with my Neurologist now and awaiting one of his colleagues to take up my sad situation. They must realise that clock watching for your next dose is counterproductive to any sort of normal life, I quite often forget my 3pm dose and by 5pm I want to slit my throat.

My layman’s take of drugs such as Opicapone and Stalevo is that they hijack the hijacker which destroys most of the Dopamine in the Madopar before it gets to our brain.

Well any views on Stalevo would be most helpful or any other medication that didn’t require taking it so many times, I just feel so tired all the time and Parkinson’s has finished my life a bit early. Like all incurable diseases, Parkinson’s takes its toll slowly and without compassion: roll on a cure.

David Moldon

Hi @davidmoldon

Welcome back to the forum, I amsure you get a lot of varied information regarding medication, so in the meantime you could have a look at our information on the website, alternatively please do contact our helpline on 0808 800 03030 or email: [email protected] and they will be happy to put yu in touch with a specialist nurse.

Kind regards

Sue - Moderation team

Been on Opicapone for 15 months now after having symptoms like you. It has made things much more tolerable. Not had supply problems except one time the pharmacy thought it might be delayed.
I’ve not tried Stavolo and didn’t want to risk dopamine agonists.
Good luck

Hi Thorny
I am amazed at the number of drugs and alternative medications there are available, and I have only been on Madopar.
I have been seeing my neurologist for seven years in a small office at Winchester Hospital, and all I can recall is walking a few paces for him and he standing behind me and asking me to lean back. Oh the other trick is to see me clicking my thumb and forefinger together.
Well that says it all,not how are you between taking the Madopar, or do you feel like jumping in front of a bus. I hope to gather as much information as I can and see my Parkinson’s nurse when she returns for holiday, I hope she is not going to Spain !!
Happy days.

LIke you, I have to take Madopar several times a day, and have a lot of ‘off time’. I currently take Madopar 125, 5 times a day, and a slow release Madopar 125 at night. On bad days, or when I have to be sure I’m going to be OK, I use either an additional 62.5 Madopar hard capsule, or a 62.5 dispersible.

A few months ago the amount of wearing off I was getting had become unbearable. The Madopar was only working for an hour or less and in between I was in very considerable discomfort. I was also getting several attacks of Restless Leg Syndrome every day, which is a horrible symptom.

Because of the lockdown my attempts to get a drugs review was a no-go for several weeks, but I eventually started taking Pipexus, having discussed Opicapone, Entacapone and Sinemet, with my neurologist and the Parkinson’s nurse.

My neuro liked Opicapone, but my local NHS won’t allow it to be prescribed unless the patient cannot tolerate Entacapone, which works like Opicapone but has more side-effects and is cheaper.

Sinemet is a combination of Entacapone and Madopar, which cuts down on the number of pills you have to take. My Parkinson’s nurse likes Sinemet because it comes in a lot of different dosages, making it easier to fine tune the daily medication routine.

How I ended up on Pipexus, rather than Opicapone or Sinemet is a long story involving a Nuffield hospital being taken over by the NHS, my neuro being a bit of a prima donna, my Parkinson’s nurse being a bit huffy about liaising with a neuro outside her NHS area, and a prescription being sent, in error, to the someone with the same name as me. I won’t bore you with the details.

I’ve now been taking Pipexus for a couple of months. It was titrated (gradually increasing doses) to 1.05 mg a day. This is taken as one, rather bulky tablet taken first thing each morning. It is important not to break the tablet, because it is designed to gradually dissolve during the day.

Pipexus has a notorious side effect of OCD. Some people taking it have gambled away their life savings. It can also cause increased libido, and some men start becoming obsessed with porn. The risks seem to be less for a woman, but I was nervous that I’d start compulsive eating or shopping.
In fact, so far it hasn’t caused any compulsive behaviour, but mentally I feel sharper than I’ve done for a long time which is a definite plus.

Pipexus also has a side-effect of daytime sleepiness. I am inclined to nap in the p.m., but I tended to do this anyway.

So far, Pipexus is working to reduce my off time quite well. On average I’m getting off time of around an hour before each Madopar pill takes effect, but there is considerable variation from day to day. Some days I will have almost no off time all day, on others it is as if the Pipexus has had no effect at all.

I usually get Restless Leg Syndrome for a few minutes just before the Madopar becomes effective, half an hour to forty-five minutes after I’ve taken the Madopar pill. Pipexus is supposed to be good for RLS, but I’m experiencing variation from day to day with this symptom too: on a good day no RLS at all; on a bad day I’ll have five, six or even seven bouts of RLS lasting as long as half an hour.

I have been unable to discover why the Pipexus seems to work one day and not the next. I discussed it with my neuro over the phone last week and he is sending me a prescription for an increased dosage of Pipexus to see if more is better (it should have arrived days ago, so I’m hoping the one other woman in Devon with the same name as me will be taking the prescription sent to her in error back to her GP soon.)

Hi Jane
What a troubled world we live in, you would have thought by now the neuros would get together and agee on a course that would help everyone, not how much can we make out of these poor devils.
I have just taken my aged laptop in for an upgrade, I rather think I am also in need of an upgrade!!
I want to try opicapone as contrary to my neurologist, it seems to be readily available.
Keep in touch with your troubles, [email protected]
Just in case I get fed up and jump over that cliff.