Underprescribing Sinemet for PD? - Cure Parkinson's

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Underprescribing Sinemet for PD?

ramotswe profile image
28 Replies

In 'The New PD Treatment Book' (2015) by Eric Ahlskog he says on page 164, start with one carbidopa/levodopa 25/100 3x daily, week 2 up the dose to 1.5 tablets 3x daily, week 3 increase to 2 tablets 3x daily, week 4 increase to 2.5; week 5 try 3 tablets 3x daily. His aim is to find by trial and error the dose for the individual that best eradicates PD symptoms.

But the prescribing regime by our local NHS (UK) nurse practitioner specialising in PD says one Sinemet 25/100 to be taken 3x daily. I'm told that that is what every PD patient gets and there is no option to increase the dose.

My Sinemet dose of 25/100 3x daily has made a big improvement in my symptoms, but I feel I could become even better with a higher dose.

I would welcome your thoughts on this discrepancy. I've read Ahlskog's book and I find his advice very convincing.

28 Replies

"But the prescribing regime by our local NHS (UK) nurse practitioner specialising in PD says one Sinemet 25/100 to be taken 3x daily."

I have never heard this to be the case. I suggest you get another opinion, or perhaps someone else from the UK can chime in...

Nitro53 profile image
Nitro53

She shouldn’t be specializing in PD. You need a new nurse, she is apparently lacking in education of the disease. Many people need much more as the disease progresses. Good luck.

Smittybear7 profile image
Smittybear7

I was started at 1/2 tablet c/l(25-100) twice a day for 3days to 1 week . It was then increase d to 1/2 3times a week,,then worked up to 1 pill 3 times a day. Then increased to 1 1/2 in the am, 1 afternoon and 1 evening. Each increase seemed to increase tremors in frequency and intensity. So I was told to stay at that dosage. I saw a movement specialist on Wednesday who said I was stage 2 .I told her about the dosage issues and she said to stay at that dosage until I see the neurologist in January. I am very frustrated. To address the cramping when sitting I was prescribed 5mg baclofen .

WinnieThePoo profile image
WinnieThePoo

My dad was on 2x25/100 4 times a day and an agonist in edenbridge Kent. You need to see a neurologist.

I live in Alamogordo, NM, USA.

UK

“ PD says one Sinemet 25/100 to be taken 3x daily. I'm told that that is what every PD patient gets and there is no option to increase the dose.”

That limit is what one neurologist and one MDS demanded for my treatment.

puretone profile image
puretone

I think Ahlskog is the preeminent expert on levodopa dosages isn't he?

Dap1948 profile image
Dap1948

After 12 years, I am still only on 2 x 100mg. daily even though my neurologist seven years ago told me to take 3! They don’t lock you up if you take a dose that YOU are happy with.

ramotswe profile image
ramotswe in reply to Dap1948

Thank you Daphne – I need reminding that it's all up to me! Would you mind telling me what your routine is – pill timing, protein issues et cetera?

Dap1948 profile image
Dap1948 in reply to ramotswe

I am lucky enough to be able to ignore the protein issue and take one ldopa tablet at 9 am and a half at 1 pm and 5 pm. Roughly with my meals. The other day I took a whole tablet at 5 pm and felt as if my head would burst. I did not feel good.

ramotswe profile image
ramotswe in reply to Dap1948

Is that carbidopa/levadopa? I like the idea that less is more, intuitively I want to go there. But I want to play my flute again and with my tremor I might have to load up with dopa for that but at what cost?? And then again maybe not! PD has me in two minds.

I've written to my movement disorder expert for his opinion on more or less. Will let you know what he says.

PD is mysterious and temperamental isn't it

Dap1948 profile image
Dap1948 in reply to ramotswe

I take madopar rather than Sinemet. They do the same job. As you’re a keen musician have you read my book “Music as medicine particularly in Parkinson’s”? It’s available from Amazon. And as your instrument is the flute, this is my daughter katherinebryan.com. Good luck

ramotswe profile image
ramotswe in reply to Dap1948

Thankyou! I'll head to Amazon.

Condor13 profile image
Condor13

I have been on 25/100 three every three hours, then 2 at midnight and at 3.00 am. for almost two years, with no side effects

(Actually on Prolopa. which is the Canadian version of Madopar, but the same amount of

L- dopa) as Sinemet.

jackedmonston profile image
jackedmonston in reply to Condor13

My disease took a turn for the worse after about six years and my neurologist (third one assigned to me by Mass General) increased my dose of C/L and switched me to Rytary. I was also taking roprinerol and Rasagiline. I developed dyskenesia, and in time, cervical dystonia, and my spine got so damaged they want to do surgery, but I have to stop the dyskenesia first or the surgery won’t take.

So I switched docs and went to one who is French. She cut out the roprinerol, and redistributed the rytary. I take roughly same amount total but divided by five instead of four. That reduced the dyskenesia by a lot, but left me with increased “off” time, night sweats, and very poor sleeping. She added amantadine. We shall see.

My daughter in law used to sell drugs to neurologists in Europe. She said that European doctors are far more cautious in prescribing drugs than Americans. They look at it differently.

Ahlskog is particularly aggressive in his use of levodopa. He prescribes a full dose of C/L at night if you can’t sleep. My neurologist did not agree,

I do not know which approach is best, but I think we need to do more to figure it out.

Meanwhile the FDA has approved the use of Focused Ultrasound to control dyskenesia and other symptoms and I am pursuing that course.

ramotswe profile image
ramotswe in reply to jackedmonston

Yes, Ahlskog is very sure but I wonder about side effects with large doses

condor39 profile image
condor39

I think it helps to share our experiences, but we are all very different.I take my advice from the Movement disorder Clinic in Toronto, they have enormous experience. My current high dose was increased slowly and I did not get side effects but minimal dyskinesia.

With Sinemet, I developed diarrhea and had to stop. The specialist did not believe it was the cause, but I tried again, and it recurred. It is not listed as a side effect, but just this week I was having lunch with a fellow physician, who also has PD and he had the same problem with Sinemet. It did not happen with Prolopa.

Good luck with your program -and I think luck is a big factor.

Buckholt profile image
Buckholt

I have no idea what the best approach is. Some say take as little as you can, others say don’t save it for later, take plenty now to stay on as much as possible.

Instinctively, I favour the cautious route, and I do not aim to be active all the time, but accept some down time in the day when I rest and read. I think my approach is partly psychological, in that knowing that I take a low dose means I have somewhere to go in the future and haven’t already exhausted my medication options.

Albt4z profile image
Albt4z in reply to Buckholt

I also favour the cautious route. I was prescribed 8mg Ropinirole to start with. After a year, no improvement so 100/25mg Madopar x 3 daily was added. I did ask why keep on the Ropinirole and was told it would help the Madopar work better, After a couple of years and a different neurologist, Ropinirole dose was reduced to 6mg as 8mg was making me too sleepy to drive. After another couple of years, Entacapone was added to my Madopar dose to increase the length of "on" time. I was reluctant to take more Madopar as I didn't want to get "writhing" side effects. I now take 3 or 4 doses of Madopar/Entacapone as I wish (the evening dose depends if I am just relaxing or socialising with friends). I have no problem moving in the morning before my first set of pills. But I find after I have taken Madopar I usually tremor for half an hour or so until it's absorbed I suppose.

ramotswe profile image
ramotswe in reply to Buckholt

Yes, I thought less is more but that's where we part company with Ahlskog . I wonder again about side effects and whether a low dose coupled with lots of exercise would do the trick.

Lionore profile image
Lionore in reply to Buckholt

Agree wholeheartedly. I’m seven years in, have only added half a Sinemet to the 3 times daily routine. As a retiree I can live with the off periods by not scheduling anything challenging then.

ramotswe profile image
ramotswe in reply to Lionore

That sounds doable. What's your day like – how much off time do you have to live with?

Lionore profile image
Lionore in reply to ramotswe

I take my first dose around seven am, about an hour after waking. I’m OK for that hour. My partner brings me coffee and fruit,and I read and do a bit of spiritual exercise while in bed. Breakfast is about an hour after medication and that’s when I take supplements. I’m good all morning and exercise and accomplish a lot until 11:15 or so when I become slow moving, anxious and apathetic. This lasts until next dose around noon kicks in. Lunch ends the off time. I try to relax during this off time by mindless internet surfing while on the couch. Off time before dinner isn’t as intense, fortunately. Last dose around five pm., dinner and wind down.it would be awful if I had to work. I do a wfh volunteer job one day a week and that’s enough.

ramotswe profile image
ramotswe in reply to Lionore

Your experience is very similar to mine: first pill okay, then a dip late morning, then diminishing returns as the day progresses. I thought more dopa was needed but the jury is out at the moment and I'm just waiting to see what my movement disorder 'expert'can contribute. Thank you very much for that

laplaya profile image
laplaya

HOPE THAT IT HELP YOU...sorry about my English . I started 8 months ago with the HINZ protocol. every week they increased the dose of mucuna

at some point I realized that it was too annoying for me to take so many grams of mucuna and it was not clear how much more they were going to increase me. Every week they increased the dose. And also it is already going too expensive because only CHK mucuna powder was spending a thousand dollars per month, plus B complex, B6, D3, omegas, neurorplete, glutathione,( which I buy every month anyway Because it's my home business and I market it.)

So I started two months ago with a MIXED protocol. carbidopa levadopa minimum dose 25-100, ( I CUT IN IN HALF), a capsule of CHK mucuna and a capsule of protocol for life balance mucuna extract. 4 TIMES A DAY

plus all the other supplements. I'm improving a lot. my goal is to reverse the damage. I'm reading the placebo, it's you from Joe Dispenza and Supernatural.

--

ramotswe profile image
ramotswe in reply to laplaya

Your English is fine. That's quite a lot of dopa. Good luck with your protocol, keep us posted

GinnyBerry profile image
GinnyBerry

I increased mine recently to 2 pills of 25/100, three times per day. I feel infinitely better. I had been doing 1 pill, 4-5 times per day. Now I feel more motivated, have less off time. Almost normal. Better quality of life. Isn’t that why we take it?

I will meet with my neurologist next week. He needs to agree because he has to prescribe it. He has generally been flexible but has typically advised using the minimum dose of Sinemet, due to side effects. Of course, Asklog suggests that the side effects will occur either way and that there is no “saving it.”

It feels great to feel good! And it’s surprising that while I only increased the daily dose by one pill, the effect of taking larger doses was substantial.

GinnyBerry profile image
GinnyBerry in reply to GinnyBerry

I just wanted to add that I am 4 years since diagnosis and have rigidity/ bradykinesia — no tremor.

ramotswe profile image
ramotswe in reply to GinnyBerry

That's what I imagined would happen to me with a higher dose. I'm seeing someone at the Movement DIsorders clinic this week' face to face' and we'll chew over the options viz side effects, low dose with strenuous exercise, low quality of life compared with high dose and can you really take as much dopa as it takes etc etcI'm glad its working for you and thankyou for posting

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