I take two 25/100 sinemet per day. I experience no symptoms at this time, diagnosed seven months ago. My neurologist said, see you in a year. I’m 72, in otherwise excellent health.
How long can I hope sinemet will be e... - Parkinson's Movement
No scientific proof? In a court of law all you need for proof, three witnesses. I am one, hundreds more in Facebook group.
The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.
New schedule, now I follow this regimen:
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.
2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
Join my facebook group:
"parkinson's thiamine hcl"
Parkinson's Relief, Questions and Answers
I have tried mucuna. I still have a tub of mucuna sitting unused.
3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. has not been my dose for over one year.
2x a day C/L 50-200 ER : at rising from bed and one more time in the late p.m.
My neurologist prefers I continue with C/L and as long as I am also on B1, no side effects expected, to include dyskinesia.
I met with a neurologist at the University of WA last year and he said that he has patients who are still taking the medication 20 years post-diagnosis and are still doing well. He told me to take the medication and to not worry about it. May we all be so fortunate! How did they diagnose you with PD if you have no symptoms?
2 tabs is almost nothing. Sinemet doesn't stop working, the persons brain stops being able to use it as effectively. No one can say if that will happen to you.. Roy says 5 yrs honeymoon then progress more rapid - i don't think that is necessarily true, for many (but by no means all) people it becomes more complex and more of a challenge to treat after 5 years but I know many 10 yrs on still with mild symptoms. Enjoy life and don't look too far into the future.
I'm 14 years post-diagnosis (more than 10 years on levodopa/carbidopa) and I'm doing well (apart from constipation). For instance, I walked a fast 10 miles on Sunday. My drug regimen is designed to reduce the fluctuations that are thought to be the cause of levodopa induced dyskinesia. I take daily: 1 mg rasagiline to make the dopamine in the brain last longer, 8 mg ropinirole CR, a dopamine agonist, which has a longer half life than levodopa, and 5 X 75 mg Stalevo (levodopa/carbidopa/entacapone). The first two drugs form a foundation which means that if I go "off" it is not a profound off: I can still get my self home. The Stalevo is dynamically dosed: I take it on an as needed basis, taking it when my body is beginning to indicate that I'll be going "off" in about 30 minutes, to give it time to be absorbed. This contrasts with the normal approach to taking L/C every 3 hours, regardless of whether you need it or not.
A: levodopa/carbidopa is Sinemet, or a generic. You can also see it written as C/L or L/C.
A: I don't have to hand the changes to the regimen over time, but approximately and not listing the titration of the doses:
year post diagnosis
0: no meds
1: 1 mg rasagiline
2: 1 mg rasagiline + 1 mg ropinirole CL
3: 1 mg rasagiline + 16 mg ropinirole CL
4: 1 mg rasagiline + 16 mg ropinirole CL + 3x100 mg L/C
6: 1 mg rasagiline + 8 mg ropinirole CL + 4x75 mg Stalevo
11: 1 mg rasagiline + 8 mg ropinirole CL +5x75 mg Stalevo
In order to understand what's going on see the app I've written that draws a graph of levodopa equivalent plasma levels.
A: no dyskinesia.
Sorry, I wasn't clear. The Stalevo is "dynamically dosed". The rasagiline and ropinirole are taken with my first dose of Stalevo. This is usually taken between 0600 and 1200, depending on how I feel. Many days I get up feeling fairly good (say half way between an "on" and an "off") and if that's adequate for what I want to do, I tend not to take a dose.
The idea is to take the least amount of medication for the longest time possible. Parkinsons is a life long diagnosis and the fact that you take this low of a dose of Sinemet with good results is wonderful! If in the future your symptoms worsted, there's plenty of room to increase your med and still get good results.