I think 7 days on any given regime is enough for me to gauge it's success. My Parkinson's nurse is saying I should allow THREE MONTHS!
I'm sorry I don't think I can bear the symptoms that I associate with some changes for that length of time! I think this 90 days of agony they are suggesting is more for the benefit of an overworked NHS than mine!
What do you think?
This is just n=1, but for me whatever I get initially is not going to get better thereafter. The one time I was persuaded to persist the results were not good.
3 months would be right for a change in diet or exercise, but does seem unnecessarily long for a pharmaceutical.
Which drug?
Replaced 200mg Entacapone and 200mg L-Dopa with single 200mg Stalevo...so essentially exactly the same by weight, just all in one pill!
I just changed from Madopar to Stalevo and the results are amazing noticeable in 2 days
Glad it works for you. Difference for me seems less stark, and overall worse (still confirming but seems reliable) which is a pity as the option to take one pill instead of three was enticing...
I’m really interested why you wanted to change from Madopar to Stalevo, and what results you achieved??
My husband has been on Madopar for 7 years and he doesn’t feel ‘quite right’ after taking each dose. For the last year or so I have been asking to change to Kinson but the new neuro has cut him back on the dosage and making it 2 hourly in lieu of 3 hourly. It seems to help, but still room for improvement!
Hi. I was taking Madopar every 3 hours day and night and my ON time barely lasted 3 hours. Since changing to Stalevo a month ago I take it 11am. 4pm. 9pm then Madopar ER 11PM AND Madopar 5am and it has made an amazing difference.
Thank you 🙏
I was told2 weeks when I started amantadi e
I couldn't agree with you more!Do you mind me asking how often do you see your PD nurse? I saw mine once in three years. I don't have physio either.
Wondering if other PwP have the same experience.
Thanks.
It's random. I think I've only seen them twice this year but I do have their email.
Yeah, you're right, they hate that I have their email I'm sure.
Ah, I don't have my nurse's contact details, not even a telephone number. If I need to get in touch I have to phone her secretary, and when I do the secretary is never there though an answering machine is. The problem - they go through the recorded messages once a week!At the same time the NHS website is telling me that my PD nurse is my lifeline...
I'm afraid it is very much a case of the squeaky wheel gets the grease. There is no point in being the traditional self-effacing Brit who takes the brush-off stoically because they "don't like to make a scene".
I'm not sure how I came to have the email address for them as a department...but I am grateful to whichever faceless receptionist forwarded messages from me to individual nurses by name. Yes, it helps to know your way around a computer - if you do, check any emails you've received that contain the word "Parkinson" and see if there are any emails entered into the "cc" field. If not, recruit someone who does.
Alternatively, Google is your friend. Try searching for "Parkinson's nurses {your county} email"
Last resort... email my nurses (Staffordshire) and ask them for contacts in your local area.. .(Don't tell 'em I sent you!) I've broken up the email so bots can't poach it...you'll need to join it all back together...
parkins
onsdiseasen
urses@uhnm.
nhs.uk
I will say one thing for my Parkinson's Nurses...when I HAVE spoken to them they act...I wouldn't have my melatonin if it wasn't for them. It was them who first told me about the CUE1 device, the PKG watch AND Opicapone, Entacapone etc.
Thanks for your reply, I find parts of it rather amusing...No, I'm not going to contact your PD nurses and ask for the email of my (Scottish) nurse.
Even if I had it and I wrote directly to them, they would not reply. The same is valid for my Neurologist.
Out of curiosity, when your nurse told you about opicapone did they tell you that you should reduce the daily dose of Madopar otherwise you will most certainly overdose? I can tell you how such an overdose feels in a separate message.
I don't take Madopar, only Sinemet, and mostly I was on the controlled release half Sinemet. They did mention that it might result in or require a reduction, but at time of change I was taking 2x 100/25mg every 6 hours...so I was already suffering with some "tail off" issues.
Not to bamboozle anyone with science, but the CR version of Sinemet is some 40% lower in bioavailability, so I think that protected me too.
They persisted in saying I should try a reduction, but take it more often; 150mg, normal release but every four hours. Disastrous. I basically never had any "on time" at all. I'm pretty sure my body/brain needs the higher quantity to get there.
I persisted with the Entacapone, but apart from a "day one" improvement it really makes no positive differences and after taking if for a couple of months, leaves me feeling worse than before I started it.
I'm in the middle of proving that 100% to myself right now and thus far it seems I'm right; taking two doses of the Stalevo in the morning (6am and noon), and then back to just 2x100 half Sinemet at 6pm and midnight. So far, it feels like my evenings are better as a result, so I'll be kicking the Stalevo into touch in the second half of next week if this continues.
I may have picked up on something else potentially interesting, but I need to be confirm it's real before I claim to much for it.
Forgot to ask, are you still on opicapone?
No. Opicapone was so bad I only lasted 3 days.
Why was Opicapone bad. I’ve been trying to get it prescribed for over a year
Gave me huge anxiety, 100% insomnia and a urine infection. I stopped taking it after three days, took another 48 hours for sleep to settle down again and of course seven days of mercury based antibiotics for the UTI.
My husband usually gets reviewed by Neuro about 3 months after new drugs are given and adjusted. Sometimes he has taken more than a few weeks to get used to a change in pill regime.
He’s seen a PD nurse 3 times in 9 years. Our Neurologist is now in Central London and he has referred him to Speech Therapy which took about 11 months wait!
They respond to emails though.
How do you solve a problem like Maria’s??
stopping dopamine agonist to start taking sinamet, how long to give in between?
general: how do you take your morning dose? do you take your C/L on empty stomach, with food or after?
Mannitol ; how much , when and how to take-in?
Do you use any devices or apps to monitor your Parkinson's - or would you be interested to try some out?
