how much levodopa is normal?

[saraoutwest]

I’m 7 years in to this fun ride. Mostly I’d say I’m doing ok. I’m tremor dominant bilateral now. I do have rigidity and slowness as well when off. I’d say that when I’m medicated well, people wouldn’t know I have PD and I feel pretty normal. I’m taking C/L 25/100 5-6 x per day. (2.5-3hrly) Would this be considered a large dose? I can survive on 3-4 x daily but I get quite a bit of off time and feel pretty miserable. How much are others taking 7 years in?

[johntPM]

17 years after diagnosis and I take per day: 1 mg rasagiline, 8 mg ropinirole, 5 x 75 mg Stalevo. That's a levodopa equivalent dose of 760 mg.

There's a great deal of variation from person to person. So, I would consider your dose typical. Unless or until you have dyskinesia I would stay at a dose that gives you a good QOL.

Also, it is my experience that once you have titrated to a suitable dose, that only a slow increase in medication is needed over the years: I've been on my current regimen for 6 years.

[Farooqji]

What's your age

[1953bullard]

I’m 7 years in also. I take 4.5 a day of 25/100 C/L. So far only affected on one side

[theAfrican]

it look normal after 7 years .

[dadcor]

No this is not a big dose. It could be much bigger! Dosing is very individual..

[laglag]

I'm 20 yrs in and taking 5 - 6 per day.

[caitilin]

Thanks for asking this question, Sara. At 73 years old, I’m 5 years 6 months in; and I’m similar to your situation.

I take c/l, 25/100. One pill, every 4 hours… 6 times daily around the clock. (6x4=24)

I haven’t changed dosages or timings since diagnosis. My medication schedule is every 4 hours. On time, every time! 🙂

I’m also taking vitamin B 12 and Folic Acid daily as prescribed by my doctor.

[JohnPepper]

As everybody knows, there is no cure for PD! But now it has been proved by the Mayo Clinic that high intensity aerobic exercise produces GDNF, which repairs the damaged brain cells. I have been doing fast walking since 1994 and have been symptom-free since 1998.

I am now 88 and my legs ae giving in so, my symptoms are returning. You are not too late to start doing the walking and you owe it to yourself to give it a try, before it is too late.

Contact me!

[Hidden in reply to JohnPepper]

John

You only do fast walking? I was diagnosed in June, 2022 and have been walking 1.5-2 miles about 3 times a week for about 30 min. Im 63 and on .5mg rasagiline. 1/4 tab of C/L in a.m. and 1/2 tab C/L before bed. So far no major issues. Mostly curious about your exercise routine. Thanks!

[JohnPepper in reply to Hidden]

I am 88 years old now, but in 1994 I started to do fast walking. Everybody starts at 15 minutes three times a week and adds five minutes every second week until reaching one hour. Then the goal is to keep trying to walk faster and further in that one hour. I got up to 9 kilometres in an hour. I was then 60 years of age.

Now I can only walk for 20 minutes and cover just over 4 kilometres per hour.

I hope this helps you!

[Nicopwp in reply to JohnPepper]

John,

I am a great fan of yours and fully support aggressive exercise regimes, indeed a lifestyle centered around such! You say "symptom free".

With all due respect, HOW DO YOU KNOW YOU HAVE "PD"?

I often wonder what is PD. I've been told I have it. (Mostly a unilateral tremor and balance issues). Is PD a vast conglomeration of factors/behaviors/exposures that results in a basket of dis eases - Symptoms - that are not easily quantified, identified or unpacked? Once the basket is full that is when the alarm bells go off! I/We didn't wake up one day and have PD.

The established remedies for these dis eases are thus easily categorized and prescribed by the symptoms. Unfortunately and sadly they are generally not a panacea.

It seems obvious that consistent body movement/exercise and diet is at a minimum essential to health and vitality. As John demonstrates, with his preferred methods, the more aggressive we can be, the better!! In this regard many of us are perhaps guilty of failing to achieve what we strive for or want? What we did yesterdays and today will likely determine our tomorrows. I strive to achieve what John has with his health and fitness.

Beyond our body is our emotional and spiritual selves. I won't go there now... Well, we are all going to pass away. Some sooner than others. I'm going to fight every new day and try to spread joy and light everywhere I can. Maybe even forget the PD label for a while

I know that I ALWAYS feel better when I exercise through the resistance, fear, PAIN and doubt. Whenever I feel shitty I try shift to movement. It usually works. Its really really HARD, EVERYDAY "a new mountain". But getting to the other side is tremendous and worthy of daily celebration. There are so many amazing resources right in front of us!!! We are the resistance?

Maybe this is the gift, having to accept responsibility for ourselves beyond the pills and what everyone/anyone says including the "small you(s)"? Its not easy, but what is the alternative

John, I find you an insipiration. I know many others do too! You rock!

Thank you all for reading my diatribe.

Keep the faith, we can do this. We are not alone

With Light and Love,

Nico

[JohnPepper in reply to Nicopwp]

Hi Nico. First of all, thenks for your kind words.

I will try to dispel your doubt about my claim to have Pd. The proof of the pudding is in the eating. I have suffered many health problems over the past few years which have stopped me from walking, and especially FAST EWALKING, with the result that many of my symptoms have returned, with a vengeance. I have prostate cancer for which I have had my testicles removed. Because of my age it is not going to kill me. The worst side effect of the removal of my pride and joy is that I am now in permanent menopause, which the ladies find hilarious. It is not nice to have 'Hot Flushes' several times a day. I get absolutely no sympathy at all from anyone. The ladies feel that, at last, a man has got to know what they have been through and treat it with respect. The only difference is that my hot flushes will continue, for the rest of my life, seven or eight times a day.

You said, I do not claim to be symptom-free, I claim to be 'movement symptom-free.'

Do you do any fast walking? If not, then give it a try, it really does work

[Nicopwp in reply to JohnPepper]

Thanks John. I'm 63 and walk briskly 4-7 days a week for an hour and do daily meditation 15 mins and indoor exercises/yoga 30-90 mins. My wife partner is an active participant in these activities and my health. We lead a fairly active life occasionally skiing, climbing mountains and sailing. I'm blessed that I can still do these activities. I know the exercise is essential and you are our inspiration.

I can't imagine what it must be like to have lost the brothers Hopefully the memories of past adventures will provide you some satisfactions?

God speed.

[JohnPepper in reply to Nicopwp]

Hi Nico.

Please do yourself a favour and only do fast walking EVERY SECOND DAY. You must give your muscles a chance to recover. If you are not walking at your very highest level then you are doing nothing to help your PD. You can exercise other muscle groups on the in-between days.

[estubbs79]

i’m seven years as well and used to take 4-5 CL day, but now only take 1/4 tab 4x day with 1/16tsp mucuna

[PixelPaul in reply to estubbs79]

That's a rather drastic reduction. What do you attribute that to?

[estubbs79 in reply to PixelPaul]

it controls all my symptoms but still dealing with the ofttimes, causing dystonia, but receiving Botox for focal muscle spots which helps. I had to reduce the pills because they were causing low blood pressure, heart palpitations, and cloudiness which I seldom ever get on mucuna

[estubbs79 in reply to PixelPaul]

I meant to say mucuna Controls all my symptoms by itself

[Dianne266 in reply to estubbs79]

My husband has been diagnosed for about 14 months. He took 25-100 c/l for about 3 months then stopped. He found out about mucuna pruriens on the internet and has been trying it for about 7 months. We're doing this by ourselves and do not know what amounts we should be taking. We have found no one here in Canada that seems to know what dosage to take. But he was not noticing any difference with the mucuna and was starting to feel badly - very tremory, slow and stiff movements. So he has gone back on c/l 25-100. What to do?

[chartist in reply to Dianne266]

This link to a thread discussing MP may be of help.

healthunlocked.com/cure-par...

Art

[jimcaster in reply to Dianne266]

If the Carbidopa Levodopa is effective, use it.

[Lionore]

almost 8 years in, take 3 and a half doses of 25-100 c/l. One pill at 6:30 am, 1 pill plus a half at 11:30 am and last pill at 4:30 pm. Also Rasagiline, NAC and various supplements.

[Debgiffen]

I’m almost 8 years in but I only take 3/4 tablet total of Sinemet per day. I take 1/4 tablet of Sinemet with 2 Now brand Dopa Mucuna at 8:00/11:00/2:00 and nothing after that unless I need to go out socially.

This low amount of medication is thanks to high dose thiamine (2000 mgs/day), lots of exercise and a plant-based diet. 

[Kt088]

I’m 15 years in now and still just taking 4 Sinemet pills a day. Yes, I agree, we are all on different paths with our meds. I exercise every day and have from the start which may be the reason I’m taking the amount I’m taking after all these years.

[KevinBurns]

Diagnosed about 7 years ago, I'm taking typically 1 full C/L tablet 25/100 in the morning, and will take 1/2 again at no certain intervals during the day depending on how I feel.

Some days I take a total of 2 pills and some days 3-4. Too much, and the dyskinesia makes me shake, and too little also makes me shake .

Constantly trying to find that fine line in the middle. I also supplement with B1, but I'm beginning to feel the need to reduce my dose from 1.5g downward.

There is though, a few moments of bliss when I first wake up, that I have no symptoms at all. Makes me want to stay in bed, but we all know that's not good.

[gl2238]

7 years after diagnosis, Now at 6X to 8x of Sinemet 25-250, Lyrica (3 - 200 mg/day), 4X Comtan 200 mg, ++. Quality of life????. Also have global Fibromyalgia, and major GI issues. I guess I would be in Stage 4?. Fragmented sleep i s worse problem as is Gastropheris. As to the Sinemet. I am trying to Titrate down. My non motor symptoms are worse than motor.

[Coot18]

I do six a day, every 4 hours, of 25/100.

Also doing mucuna puriens. And b1.

[eschneid]

Almost 16 years in and take around 2 grams of Levadopa daily. One 25/100 c/l with mucuna every 2.5 hours now, approx 8 doses/day.....still very active, although since 12 years in things have definitely progressed faster. My doses used to be seamless, but now waiting to turn on brings worse tremors until it does kick in. Still playing basketball, walking 3+ miles/day & biking 80-90 rpms on a trainer for 30 minutes some days. Surgery for rotator cuff last week is setting me back a little, but still walking and biking. Probably will end up in Sonimodul in the not too distant future....

[Jmellano]

I am 68, diagnosed 2015. I was taking brand Sinimet until Merck dropped it. I did not do well with generic c/l, was taking 25/100 5x/day every 3 hours but I was starting to get down time (akathisia). Neuro put me on rytary 145s ( 3 at 7am, 2 at noon, 2 at 5pm). No more down time. There is not a one to one on levodopa content when comparing rytary to c/l. At one time in my life I was vehemently against drugs. Now that I have PD, I have no hesitation taking meds if it helps my symptoms.

[Astra7]

virtually the same as you. 5 x 100, but I sometimes need an extra 1/2. Azilxet and pramipexole as well.

Getting harder to cover up now.

[Isthistheone]

Hi sara. Nobody wants to have Parkinson's disease, but if you have it tremor dominant would be better than say gait and balance. Just my opinion (JMO) I am not a doctor just a a PWP (Person With Parkinson's) . I'm in my 18th year. I was Dx in 2010, but that only equals 13 years. My Neuro added five years based on my symptoms. He said many PWP are not diagnosed promptly. Swimming is my sport. When I was diagnosed I was swimming 2,000 yrds up to four times a week. I was having trouble with my flip turns. I thought it was old age. It was gradual, some days it wasn't there at all, it's old age what else could it be?

I take 300 mg levodopa up to 8 X per day starting at 5am and every 3 hours thereafter 8am, 11am, 2pm, 5pm, 8pm, 11pm and 2am. I usually skip the 11pm and 2am doses. I also take one capsule of Ongentys 50 mg at bedtime with one capsule Gocoveri 68mg. I also take one capsule Gocoveri at 11am the following morning. Ongentys was a lifesaver for me. It was designed and manufactured for PWP who would suddenly would go into an off k medicth little or no warning. Gocoveri is extended relief Amantadine. It is used to curb dyskenesia and dystonia. It's at most 50% effective for me. I have extensive dyskenesia. I always opted to control my symptoms and not let them control me.

There is some discussion that delaying L-dopa intervention is better for PWP.

Sara I hope this helps. Take care and be safe.

Let me do the math: 8 doses per day X 300mg per dose eq 2400 mg per day maximum. Subtract 600mg 1800 mg daily.

Sara I take between 1800 to 2400 mg Ldopa daily. The evidence does support putting off L-dopa therapy for as long as you can. Medication induced dskenesia is real. You have to call that shot when to start L-dopa therapy. I opted to be medicated. If I had to do it all over again I'm not changing.

Good luck Sara. Hope this helps.

.

[dentonpark]

I'm pretty much the same. 8 years in. Could be worse. Exercise 45 minutes....lifting weights 3x week. It is never easy.

[Daisies22]

Hello, I just wanted to say how impressed I am with the amount of exercise everyone is doing on a dose of L-dopa similar and lower than the one I am on (7 x 100/25 Madopar per day, 5 years after diagnosis).Since my diagnosis I was prescribed a dopamine agonist (initially 6 mg/24h Neupro which was very quickly increased to 10 mg/24h with disastrous consequences for me.)

I was just wondering if anyone here is on a dopamine agonist and at what dose. It seems that for reasons my Neurologist can't explain, the Neupro has paradoxically very strong negative effects me and left me almost bedridden and in need of 24/7 care.

Has anyone ever seen or experienced anything similar?

Thank you in advance.

[tandolino]

I am 6 years in and take 2 pills (25/100) 6 x per day. I have worked a stressful job until last month where I had to retire, I could not take it any longer.