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.)