I take 2400 mg of carbidopa/levodopa every day. Dose anyone here take close to that amount.

[Bailey_Texas]

Thanks

[Blackfeather]

How many mg. Is each dose and how many doses per day? What are the intervals? If don't mind me asking.

[Bailey_Texas in reply to Blackfeather]

8 doses a day every 3 hours 1 50/200 ext r and 1 25/100 per dose

[Frida12 in reply to Bailey_Texas]

My husband has taken 2400mg of carb/Levo for about 2 yrs. the response to each dose is not as good as when he first increased to that Mount but that is the way it goes for everyone. He has had PD for 13 yrs and hasn't taken agonists or any other drugs for his symptoms. He has low blood pressure problems so he drinks a lot of salt water and fludrocortisone to keep it from dropping so low that he could pass out. It is a side effect of the carb/Levo so the higher the dose of that the harder it is to control his blood pressure. Just can't win but he is trying to stay on top of Everything and needs to stay on that dose.

Hope this is helpful information.

[Frida12 in reply to Frida12]

Ps. He does have a lot of facial dyskenisia at that dose and some leg cramping as well....he has learned to live with it.....

[park_bear]

I take 50/200 mg C/L 3x daily. I have been feeling a bit queasy this week, unusual for me. I used to able to take a bit of mucuna in addition, but over the last couple of weeks I tried just 100 mg more of levodopa via mucuna, or so the package says, and I barfed both times. Could it be I am running up against my tolerance limit?

[mistergadget]

Hi Bailey-I am going now for 9 years and i am on 1000 mg of 25/100 carbi/leva.I experience for the last 3 years severe end of dose dyskinesia with severe kicking and convulsions (lasts for about 30-45 minutes after my last dose for the day goes low or any dose during the day goes low. Do you get any dyskinesia's ? How do you manage your protein intake? Does protein intake influence your "on" status?My previous specialist got me to 1000 mg and then he wanted to lower (throwiing in some agonists ) the dose-but with solid resistance from me-so I am just on sinemet.i read that some people do not get dyskinesias, even on high dose-I hope you are one of them!s- Sorry for all my questions, you were in fact the one asking the question.Can I just add, I have a non-tremor subtype of Parkenson's.

[Bailey_Texas in reply to mistergadget]

just started to get dyskinesia with severe kicking now but just noticed that my med is made by a differant company this month i have had problems in past with this. Not all meds are made the same. This may be the problem. you sound just like me. Protein is not the main problem the size of the meal not the content is the thing that effects me most.

[kievian in reply to mistergadget]

What, if any, benefits do you get from these very high doses of Sinemet?

[Bailey_Texas in reply to kievian]

The ability to do every day chores and not to be in a wheel chair.

[la8pv67]

I have been told that we should try not to exceed a total daily consumption of 10 mg of Levodopa per kg of body weight. Preferrably try aiming towards 5 mg as max...

Otherwise the risks of developing dyskinesia is high...

Example: If your body weight is 90 kg, the max total daily consumption should be in between 450 - 900 mg of Levodopa...

[Bailey_Texas in reply to la8pv67]

healthunlocked.com/parkinso...

in this video the doctor says 2000 max

[kievian in reply to la8pv67]

I take 500 mg Mucuna pruriens (100 mg L-dopa) at 0900, 1200, 1500 and 1800 h., 100 mg Sinemet at 2100 h, 50 mg at 2400 h (0000 h) and 400 mg M. pruriens (60 mg l-dopa) at 0400 h. I used to take another M. pruriens capsule instead of the Sinemet but the l-dopa disappeared overnight and I used to get cramps when i exercised in bed in the morning. The price of avoiding cramps is that bowel movement is delayed by about 6 hours.

None of this was advised by a neurologist. I worked it out for myself. At my first consultation she was pretty sniffy about people who "self-medicate", but a year later she's quite relaxed about it, saying that any patient should be free to experiment! But this was just after she discovered I had a D.Phil in biochemistry (1965!) from Oxford.

I have a very atypical Parkinsonism (no tremor, no depression, no REM sleep disturbance or psychiatric symptoms but plenty of others). After the first consult she tried to shoehorn my symptoms to fit vascular P-ism but this time she's given that up and is talking about MSA but I was diagnosed in 2010, having had early symptoms since 2006! MSA seems unlikely because (a) I'm still very much alive and (b), allowing for the fact that I'm 4 weeks shy of my 78th birthday, my cognitive ability doesn't feel particularly impaired.

[Juliegrace]

Nowhere near. Do you suffer from dyskinesia? I know of a couple people who were in the 1400-1600 mg range.

[RobertoOcana]

You are taking 600 mg of Carbidopa AND 2400 of levodopa!!! If that is what it takes -for you- to be "controled", without any harm to, so be it. What does your movement disorder says?

[rhyspeace12]

A neurologist told me 2000 a day should be max.

[Bailey_Texas in reply to rhyspeace12]

The makers say 700 a day. I am pushing the limit but it works for me. I also am pushing the limits in other things like exercise. Never know how far you can go till you try. You would not think a 63 year old could dead lift 415 pounds (188.2 klios) but i did it.

[rhenry45]

The problem you will run into is simple. Where do you go from this high of a dosage?

When your disease progresses you will be already maxed out and the sinemet will stop working and you will be screwed. I think you are also depleting at a very high rate the AADC enzyme which is used to convert levodopa to dopamine. By constantly simulating the secretion of this enzyme you will likely run into trouble down the road when it is depleted. It is best to take a minimum amount at least that keeps you functioning without overdose.

[Bailey_Texas in reply to rhenry45]

SINEMET does not stop working Pd just gets to bad for it to be effective. I don't give a damn about down the road. Life is for living now. You can not save it up. At 63 and 11 years of this thing I am treating today like my last. I saved for my retirement looking forward to it. I should have spent the money on something i liked now my kids will spend it for me.

[rhenry45 in reply to Bailey_Texas]

My best friends mom took a lot of sinemet and eventually went insane and died at age 75. She followed the doctors orders and whenever she felt a little worse the doctor upped the dosage. I know I will die someday but going insane and dying from organ failure is not how I want to go.

[Bailey_Texas in reply to rhenry45]

It was most likely not the sinemet. I have found no mention of it driving some one insane or causing organ failure. I am takine the least amount i can any less and i have a lot of pain and stiffness and swelling of my hands. Quality of life is better than length for me.

[Enidah in reply to Bailey_Texas]

Bailey, I have seen amazing results from DBS in my local support group. That might be an option for the future.

[HeartSong in reply to Bailey_Texas]

Bailey_Texas, I have done a lot of reading on PD. And, like you, I have found no mention of it driving someone insane or causing organ failure. The poor lady mentioned in the above post may well have had something else in addition to the condition that caused her to take sinemet.

[Jughead in reply to Bailey_Texas]

I think you are so right quality of life is much more important than length of life. None of us are guaranteed tomorrow any way. Jughead

[Carolinagirl123]

i take 4 25-100 mg sinemet per day. I also eat marijuana cookies on occasion, and when I do that I only need three pills a day. Red wine helps too!

[johntPM]

The experience of Bailey_Texas raises an important question: why do many of us limit our drug regimen to a level that is sub-optimal? I am 11 years post diagnosis and take a levodopa equivalent daily dose of about 800mg (5xStalevo 75mg, 8mg ropinirole, 1mg rasagiline). I am fairly sure that my symptoms would be reduced if I increased the doses and/or the frequency of the doses. But I don't because of fears of dyskinesia. However, I think the evidence to justify my approach is weak.

John

[Bailey_Texas in reply to johntPM]

Don't fear the dyskinesia it is a pain it will mess with your mind but for me it is worth the risk to see if a larger dose will help. I have had no lasting problems from too much C/L.

[dzanier]

My Father used to take L-dopa/Carbipdopa, but he now follows the Hinz Protocol (Amino Acid Therapy), which includes only natural l-dopa supplements, l-tyrosine, cysteine, b-6 and a few other vitamins. His Parkinson's has only affected his legs. His symptoms have been apparent for about 4 and one-half year. It's expensive, but Dr. Hinz says synthetic l-dopa and carbidopa deplete B-6 as well as other things, and that they do more harm than good in the long run since you constantly have to increase the dose. Do you have an opinion on this?

[Bailey_Texas in reply to dzanier]

Bullshit.

[Kia17 in reply to dzanier]

Did he say that too much B6 has very bad irreversible side effects such as neuropathy? How did he come to conclusion that Mucuna P(natural dopa) has less side effects?

In my opinion, Ldopa natural and synthetic are the same. The synthetic one has been FDA approved and certified but the natural one hasnot been. Opium is a natural herbal drug and heroin synthetic drug with the same pharmalogical effects as opium. Which one is safe ? The answer is evident. None

[dzanier]

Do you trust the FDA?

[Bailey_Texas]

quackwatch.org/11Ind/hinz.html

read this

Dr Hinz is a quack.

[bassofspades in reply to Bailey_Texas]

Hinz protocol works for me.

[Dylanfelson]

Biggest joke ever that guy

[ion_ion]

No dyskynesia?