I was diagnosed 2 years ago and take Madapor 4 times a day. I am finding that it starts to wear off at about 2and a half hours but don’t take my next dose until 2 hrs 45 mins is up. My right arm goes really stiff and rigid. I am not getting much support from the NHS , I haven’t been contacted for 11 months and any queries are over email just seem to be brushed off with " experiment with your medication".
Do I try to work through my stiffness or sit and wait for it to pass ? Should I shorten the time inbetween doses? I am not keen to do that
Does anyone know if exercise “uses up” medication faster. I play walking rugby once a week and have been taking an extra half dose before I start, topping up with my normal dose when I finish. Is this the right approach.
Anyone’s experience or general advice would be much appreciated.
Hi and welcome to our friendly forum, @justjune. The other forum members may have some experience with this so look for some answers soon. Meanwhile, it certainly can take some time to get your dosages and timing right and most people with Parkinson’s do have to get through this adjustment period to discover their best options. It must be very frustrating for you to not get any guidance in this case.
Have you tried talking to your pharmacist about this? Do you have a Parkinson’s nurse, a consultant, or is this your GP? I’m not sure why your support hasn’t been the best, and I’d encourage you to call our helpline on 0808 800 0303 for advice and support.
I do hope that you’re able to get some answers soon.
hello june, personaly i had the same type of problems ,ive come to the conclusion is that the more energy used the more dopamine we use. if i feel meds are wearing off or worn off i cant see the point of struggling, i take the meds in question if needed and adjust my times accordingly. hope this helps good luck .ps. im 55 and dx 7 yrs ago
Hi Just June Ive been on the same meds, 125/50 Madopar 4 times daily, 8 12 4 8 like you ive found them wearing off a lot quicker as I was working at the time i decided to ‘experiment’ with the timing, my consultant and nurse were a nightmare to get in touch with my problem was when i did get to see him i was always ‘on’ my ‘off’ times were getting longer and i was struggling so much that my husband took charge and after many phone calls with the pd nurse my consultant prescribed medication called Entacapone which is an inhibitor to help Madopar last longer i previously posted on the forum and had an encouraging reply from Tot . Started these 2 weeks ago but could be a while longer before i feel ant benefit . may be worth your while to mention these to your pd team rather than experiment
Good luck
You need to contact your pd nurse and maybe you could get a add on drug to make medication last longer say Entacapone before you start taking more pd drugs see if that helps there is another add on drug and that’s one tablet aday but i can’t remember name, but I’m sure if you Google it you will be fine.
Yes, I believe exercise uses more dopamine, so just make sure you are topped up before you begin your rugby. It won’t hurt if timings of meds become a little closer together but in general I wouldn’t increase Madapor intake across a 24 hour period yet. The plus side exercise is great for you and can help reduce stiffness, rigidity etc and even, perhaps give you a mini ‘natural’ boost of neurotransmitter. Entacapone may help, but I didn’t get on with it. There isn’t a perfect solution, so expect to be a little symptomatic for short spells every day.
Has anyone any experience of adding Rasagline to Madopar (4 times a day currently). Consultant has suggested it may help with wearing off. Any noticeable side effects?
I am wary of adding more medication but if I can be reassured of the benefit, I am willing to give it a go.
By the way he also said I should use this forum for others experiences, so here I am.
June
Hi I take madopar 25mg/100mg 5times a day + madopar 12.5mg/50mg as well as a cocktail of other drugs for those symptoms and was prescribed Safinamide 50mg once a day to stop the madopar switching off if that’s any help?
