How long can I hope sinemet will be effective in suppressing symptoms of PD?

[UMass67]

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.

[Hidden]

No symptoms? Excellent health?

You should Google doctor costantini parkinson's

[UMass67 in reply to Hidden]

Thanks-I’m taking 100mg of B1 twice a day along with sinemet. My doc isn’t opposed, but believes there’s no scientific proof of B1 effects.

[Hidden in reply to UMass67]

No scientific proof? In a court of law all you need for proof, three witnesses. I am one, hundreds more in Facebook group.

Diagnosed 2012

My regimen:

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"

facebook.com/groups/2322600... ; …

Parkinson's Relief, Questions and Answers

[Psalm1 in reply to Hidden]

Glad abt. the B1 being of benefit to you. You still seem to be in a high dose of Sinemet though. Do you plan on tapering off your dose, since Sinemet wld.eventually not work for you anyway. It can give you side effects akin to Parkibsons.

Have you considered trying Mucuna?

[1953bullard in reply to Psalm1]

Actually that is a very low does of sinemet

[Hidden in reply to Psalm1]

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.

[Panda30 in reply to Hidden]

Dear RoyProp,

You are an inspiration!

Does this HCL thiamin therapy work for advanced PwP? Do i start from 4g a day and scale down?

God bless !

[Hidden in reply to Panda30]

Join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... ; …

Parkinson's Relief, Questions and Answers

[Hidden in reply to Panda30]

Join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... ; …

Parkinson's Relief, Questions and Answers

[flyswat in reply to UMass67]

Are you taking it orally or by injection? How has it helped you? Caroline

[flyswat in reply to UMass67]

Hi, do you take the 100mg in tablet form or injection? How is it helping? Caroline

[UMass67 in reply to flyswat]

I take one 100mg tablet in the morning and one at dinner time. I haven’t had any changes in mild symptoms in 14 months after diagnosis. I take Sinemet 25/100 and magnesium as well.

[ddmagee1]

Sinemet should be effective for a number of years, in my opinion. You might have to increase dosage over time, but, I know with me, it's helped a lot. I am 72, also, and was diagnosed several years ago.

[UMass67 in reply to ddmagee1]

Thanks so much-I need to hear that!

[Purple0163 in reply to UMass67]

Me too!

[justhavefun2]

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?

[UMass67 in reply to justhavefun2]

I had no left arm swing, diminished sense of smell, worsening handwriting and keyboarding, and slight tremor in my left hand. These are largely gone after starting sinemet.

[Millbrook in reply to justhavefun2]

I was wondering the same thing- I mean about the no symptoms

[Juliegrace]

It still works for me after four years. Unfortunately I have suffered from side effects with very doses almost from the start. My symptoms started in my late 40s.

[dcpambrose in reply to Juliegrace]

What were the side effects?

[Juliegrace in reply to dcpambrose]

Dyskinesia and dystonia.

[ktbate in reply to Juliegrace]

Juliegrace, did you get DBS for the dyskinesia and dystonia?

[UMass67 in reply to Juliegrace]

Sorry for your issues. Sad to start this in your 40s.

[Hikoi]

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.

[UMass67 in reply to Hikoi]

I’m basically an optimist, so I’m working at maintaining that outlook. It helps to read about favourable situations.

[johntPM]

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.

[UMass67 in reply to johntPM]

That is really impressive. Thanks for taking the time to share that. I hope to do as well!

[Pa-zzi69 in reply to johntPM]

Thanks johntPM, very interesting !...

Q: Does "levodopa/carbidopa" = Sinemet ?

Q: What was your levodopa/carbidopa regimen [dosage] for your "more than first 10 years" ?

Q: When, if ever, did you start experiencing dyskinesia ?

Q: How old are you today ?

MarcP

[johntPM in reply to Pa-zzi69]

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.

A: 63

[Pa-zzi69 in reply to johntPM]

Thank you again johntPM for your immediate, detailed reply !

Q: How can I access the app you've written that draws a graph of levodopa equivalent plasma levels ?

MarcP

[johntPM in reply to Pa-zzi69]

I'm sorry, I forgot to paste in the url:

parkinsonsmeasurement.org/t...

[Jumex2017 in reply to johntPM]

My husband does not suffer from constipation.This is what he takes every morning.

Boil Guinoa,oats ,chia and blended flax seeds and pumpkin seeds and 60 gms blueberry for breakfast every morning.Are you terribly young?

[healthabc in reply to johntPM]

whats the timing on daily meds? i.e.- when do you take them?

[johntPM in reply to healthabc]

I don't have a set time to take my doses. Instead I "dynamically" dose. Please see my first post in this thread.

[healthabc in reply to johntPM]

regarding the ropinerole, when do you take that, mornings or bedtime? generally speaking-

[johntPM in reply to healthabc]

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.

[ConnieD in reply to johntPM]

That’s impressive! What is your exercise routine? What type of diet are you on?

[johntPM in reply to ConnieD]

For exercise I try to walk 5 miles per day, at an average speed of 4 mph. Some days I don't do this, but I don't beat myself up about it.

Regarding diet, it's basically normal. But, I do eat a lot of yogurt and kefir.

[ConnieD in reply to johntPM]

Thanks John do you use a treadmill or mostly outdoors ?

[johntPM in reply to ConnieD]

All outdoors. Most (since I don't have a car) just going about my daily activities.

[ConnieD in reply to johntPM]

That’s great! You are definitely doing something right! I’m inspired and you give me hope!! Thank you 😊

[Stazina]

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.

[UMass67 in reply to Stazina]

Thanks-that brightens my day 😉

[Quintin]

Well written Stazina. At the European Parkinson Therapy Centre we receive guests from over 45 countries. we use "the 4 pillars approach" developed in Italy. Medicine, as little as is needed, Movement, every day especially if you understand Neuroplasticity, Life style, Choose to live life one day at a time and to the maximum and Psychology, the way we see our Parkinson's has a huge effect on how we will live with parkinson's. Not going to comment on the B1 statements except say that if it works for you, keep on doing it. I have 15 years of Parkinson's, life is good (not always easy) and the European Parkinson Therapy Centre became so well known because it is not run by a Neurologist but by a person with Parkinson's. So all the neurotherapists, doctors, Psycologists etc know how to treat people like me (with respect, openesss and warmth for a start!)