Hi. I’m new to PD and just started on Madopar 62.5 hard caps. Taking 1 caps 4x daily and feel OK but still just scuff right heel on floor when walk. I’m inclined to stick to the 4 a day but neuro said 6 daily. He looked as though he just said that to everyone so not convinced it was “my dose”.
I know that people who put off starting treatment have a worse outcome so wonder if a higher dose would be better. Advice would be appreciated.
Please don’t say to ask my neurologist, I spent 4 months trying to get a reply Nov-Feb with no result until we reached a pre-booked appt in March. He’s a nice guy but old and tired. I take the Madopar on an empty stomach but data sheets vary over this.
Many thanks
Clive
You are on a low dose of Madopar, even taking 6 x 62.5 tablets a day. I am currently taking 5 tablets of 125 strength. If you increase the dose and find no benefit, then you could always reduce it again.
I wonder why your neurologist has not switched you from 62.5 strength tabs to 3 doses of 125 strength, which would probably be more convenient for you. I suggest you ask him about that (when you next see him!).
I don’t eat for an hour before taking a tablet and half an hour afterwards. I also avoid eating portions of protein rich food during the day. That works for me.
What physiotherapy are you doing? If you haven’t already, you should see a neurology physiotherapist who may be able to help with the foot dragging. Your GP should be able to refer you, even if your neurologist hasn’t done so.
Are you in touch with your local Parkinson’s nurse? If there is one for your area, you should get her/his advice. The PUK phone helpline is also excellent.
Clive,
You should read Ahlskog ‘The New Parkinson’s Disease Treatment Book’. He explains how to vary your dosage weekly to identify what dose works best for you. He is the Mayo clinic world(?) expert. The instructions in the Madopar leaflet are completely wrong - suggesting taking with meals is OK. Has your old and tired Neurologist clarified that exercise is the best medicine?
Dave
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I’m 8 years in. I started on 125 4 times daily. Saw some improvement. I’m now on 2 x 125 4 times a day plus a slow release 125 at bed time. I’m a little worse than I was but I’m now on what I believe is the managed period of my pd experience.
I had a neurologist who I couldn’t get on with. He wanted to talk about my business (pub) and couldn’t understand why I’d joined a drug trial.
I spoke to my Gp who arranged a change of neurologist. He was like a breath of fresh air He suggested Rasagline and later amitadine. I feel better because I believe I’m being looked after
Most people don’t realise I have Parkinsons… although my wife always knows when I’m struggling. I’ve sold the pub last year and am enjoying a well earned early retirement.
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Welcome Clive, I started on madopa 62.5 about a year after being dx. I took 1 cap 3 x per day.
11 years on and the dose was gradually increased and am.now taking 2 capsules 62.5 5 times per day. I also take with each dose 1 Entacapone 200 mg.
I take 1 Half Sinemet cr,at bedtime.
I ha
Sorry I don’t know how to re call a message sent too early!
I hate taking all these meds and hope to find an alternative when I get to see my new specialist (delayed due to Cavona).
I did really well on madopar for 9 years. Tried to increase only when very necesary. Good luck
Hi Jane,
What was explained to use by a neurologist, (that we had a great deal of confidence in), was that, taking more frequent smaller doses, say 2 x 62.5 every 2 hours rather than 1 x 125 dose,every 3-4 hours resulted in the wearing off periods being leveled out. Not so many off periods as the next dose kicked in sooner before the awful ‘off’ and waiting to take a higher dose. Peaks and troughs she said.
Hope this helps Clive in his decision. A better outcome is more important than convenience. A pill timer can help with reminding you when to take your next dose.
I myself am taking smaller but more frequent doses during part of the day, to avoid wearing off. But, until recently, I had been taking the larger dose for two years without experiencing wearing off, and I don’t see the point of the smaller dose unless wearing off is a problem.
Everyone is different and medication outcomes are different as well. I only posted as to my experience of over 20 years. I suppose it may also depend on the length of time since diagnosis as to what suits anyone best. However, in our, case, convenience was never an issue, best results on whatever regime provided the best outcome were paramount. Glad that you are not experiencing wearing off. Sadly it does become more problematic the longer after diagnosis and the longer you are on medication.
All the best
benji
Hi Clive,
With regards to upping your dosage.
Just a suggestion. If you are not happy with an increase from 4 tablets a day to 6, then maybe try alternative days of 4 and 6 tablets and see if that makes a difference or improvement to your symptoms. Keep a diary… very important. Fortunately our neurologist was happy, within reason, for us to tweak, dosage as long as we kept a diary of the affects, both positive or negative, so that both she and we could make informed future decisions.
On a personal note, and in hindsight from over 20 years ago. We would never have accepted being started on medication, Ropinirole, and it being increased from 2mg to its maximum dose of 24mg within 18 months if we had more information back then as is available now.
All the best and you can message me if you want to discuss this more.
Regards
benji
Hi Clive
I’m three years in and take a low dose of Pramipexole (prolonged release) daily plus 3 x 62.5 Madopar. Except that what I do is vary my Madopar dose to anywhere between 1 and 5 tablets per day depending on how I feel at work etc.
PD naturally ebbs and flows and I find this sort of approach works very well. I spoke to my neurologist about it and she said this was fine.
Best wishes
JF