carbidopa levodopa Dosage

[Waxbeans]

Diagnosed in 2022, late onset at age 75 with slight symptoms before. Slightly dragging my left foot and unable to run was alarming and led me to get checked out. A recommended DATSCAN REVEALED a Dopamine shortage but not severe. Very slight additional symptoms. Doc recommended a very low dose initially to 3&1/2 3 times daily. I never feel a clear need or a clear timeframe so , I tried to reduce my dosage but had symptoms gradually return. I was wanting to clearly show a need for CL like a friend has with PD. HE HAS A VERY CLEAR NEED FOR CL AT SPECIFIC TIMES DAILY

[park_bear]

You are newly diagnosed with foot dragging and slight additional symptoms. Do I understand correctly that this MD instructed you to escalate from a beginning dose to 3&1/2 doses 3 times daily. of C/L 25/100? If I have this right, that is insane. C/L is strictly for symptom relief and a person should not take more than needed.

Some people have very clearly defined on times and off times. That is not the case for me. I transition gradually from one to the other. I adjust my dosage according to what gives me the best overall results over a 24 hour period.

[popo1 in reply to park_bear]

i am ~4yrs in from 'diagnosis' with the same symptoms. was given rytary and told by 2 MDS to get up to 6 tablets a day...felt they were just trying to follow some protocol; yes, they are given directives they must follow.

am mixing rytary, a long release c/l, with regular c/l at the low dosages of 20/95? and 25/100, 3 times/day. occasionally take a day or a dose off if i don't feel the need (it took me awhile to figuge out my body telling me it was going 'off' - experiment, it does speak to you). usually, when skipping, it is the morning dose - and read a comment today from 'pdpatient' that explained why it is usually the morning dose - the body produces dopamine at night and, combined with left-overs from meds, needs to use the excess up.

park_bear - i've read a lot of your comments since coming onto this forum, about 2 weeks ago, and appreciate your experience and knowledge. i am currently asking the question about dose equivalency between benfotiamine and ttfd; i believe it is about 4:1. do you have any insight on this?

[park_bear in reply to popo1]

Thanks for the kind words!

Permission to take up to 6 tablets a day is a bit different from being instructed to escalate to 3&1/2 doses 3 times daily.

Sorry I have not researched dose equivalency between benfotiamine and ttfd.

[Pdotg in reply to park_bear]

I am confused by all these dosages! I've recently stopped taking C/L in order to start from scratch again, slowly. I was put on what seems to me to be a high dose (for very minor symptoms) - 1x 25/100 and 1x12.5/50 three times a day. Am I wrong - is this a low dose?

[park_bear in reply to Pdotg]

That would be a total of 250 mg of levodopa daily, which is a low dose. This is a reasonable dosage for minor symptoms. With that said, one should only take as much as needed to relieve symptoms.

Be aware that quitting levodopa suddenly cold turkey can cause problems.

[Pdotg in reply to park_bear]

Thanks park-bear. I've had no problems quitting, so far. I recall being told that a too-low dose of CL is a waste of time. What is a good starting dose?

[park_bear in reply to Pdotg]

In my experience there is a threshold effect. 50 mg is too low a dose for me to receive any effect. I need 100 mg to experience benefit. My current dosage at this time is 100 milligrams twice daily. I use the ER - extended release - version.

[LAJ12345]

try asking for the smallest size tablet eg 50/12.5 and cut into quarters. Start on a quarter 3x a day and see if you feel any better. Wait a week then increase a quarter at a time with a week between increases but only if you feel you need more.. Stop when you are feeling better. If you start feeling worse go back to previous dose.

And start to exercise every day.

[blackbear701]

Each person with PD is different, but what your doctor prescribed for minimal symptoms sounds extreme to me. Is your doctor a Movement Disorder Specialist? If not, it's time to find one. I was diagnosed with PD in 2019, but symptoms pre-dated diagnosis. The most C/L I have ever taken in one day is 4 and I am lucky that I have symptom relief with that. I think you should find another neurologist.

[DogsWoode in reply to blackbear701]

Hi black bear. Our profiles are very similar. Did you try 4 and have since decreased?

[Waxbeans in reply to DogsWoode]

Thanks again DogsWoode,

It’s hard to find a Doc that doesn’t seem burnt out, overloaded or not available. Sounds like me too! I fight just adding to my dosage for fear of the clearly advertised OD and increased symptoms. My walking and balance are going downhill I broke my leg trying to crank out the heavily recommended exercise. That lead to a suspicion of a heart issue then pace maker. My recent doc recommended a brain MRI as his review of my DATSCAN information was not clear so the MRI I to accept that I have PD and do the best I can I’m sure this is a common issue I have close friends with PD that are just as concerned with the dynamically different symptoms and suggested different types of PD! Oh Boy!!

I do think exercise helps but the clear symptom of low energy is a huge issue or a lack of drive which is insulting

[DogsWoode in reply to Waxbeans]

Oh boy indeed!! Low energy is a real problem for me too. Fatigue, apathy....really works against the exercise and I guess all we can do is try to fight through it. Insulting indeed! Sucks. Carry on Waxbeans!! Onward and Upward. 😚

[blackbear701 in reply to DogsWoode]

No, I actually started with just one-and-a-half; now I usually take 3: one-and-a-half in the a.m. and again one-and-a-half later in the day. On days I take rock steady boxing, I will take 2 C/L, then my usual one-and-a-half dose later on. I am trying to stay on the lowest dose possible - enough for me to vigorously exercise. Trying to stave off any dyskinesia for as long as possible. What is your regiment like?

[DogsWoode in reply to blackbear701]

Hi there blackbear,

Good for you to manage with that amount.

Great you are doing RSB. I don't have that near where I live. Do you find it a great help? The PD doesn't cause you to have fatigue? Not sure I could do vigorous exercise. Seem to tire easily.

At this point I take one 4 times a day. Every 4 hours. Why did you decide 1 1/2 less frequently? (As opposed to 1 a little more frequently? )

Whoever knew we'd have to deal with this crapshoot, eh?

[blackbear701 in reply to DogsWoode]

Luckily, no fatigue. I play around with dosage and if I get symptom relief on a low dose, I stick with it. But like you said, it's a crapshoot. I am just lucky that my symptoms aren't bad - yet!

[DogsWoode in reply to blackbear701]

Hopefully we can stay the course for a long period of time. How do you find RSB?

[Waxbeans in reply to DogsWoode]

Blackbear,

3 years into PD, I think. I told my new neurologist that I. Was concerned about not being able to see or feel a clear break or time for my Carbidopa Levo I have a close friend that has specific times he needs his pills. That concern launched my Doctor into a NPH DIAGNOSIS with a recommendation for an MRI. I did that but the interpretation suggested a small probability on NPH ?? With the recommendation of surgery consult, Oh boy, I’m ready for relief but a second opinion is needed obviously but again appointments are hard to get. Seems to me my doc should ask his fellow neurologist what they think ? They seem to be overloaded. NPH SURGERY SEEMS A LITTLE SCARY for a jump to conclusions. The symptoms of PD pretty much match NPH. insight would be appreciated.

[DogsWoode]

Supposed to titrate up SLOWLY. Be very careful with these meds as, in my experIence, a slight adjustment up can cause bad SE. A 1/4 increase no a bad idea LAJ.

[Waxbeans in reply to DogsWoode]

thanks for the insight

[NewtoPD24]

I have mild symptoms (left arm shaking and left leg shaking but both very mild). I take 1 1/2 CL 3x/s day and the leg shaking is completely gone and the arms shaking is really only noticeable to me. I saw a MD specialist to start who recommended 2 tablets 3x's/day. Got a second opinion from another MD specialist and she said, take as low a dose as you can tolerate for your symptoms. She recommended going down to 1 or 1 1/2 tablets 3x's/day. 1 didn't seem to be quite enough (I am an artist and using my hands all day) so I've stuck with 1 1/2 and that seems to do the trick.

[DogsWoode in reply to NewtoPD24]

Thank goodness for that wise 2nd opinion. As low a dose to make symptoms tolerable. And fingers crossed that works for a good long time. 🤞

[popo1 in reply to NewtoPD24]

i happy to hear the c/l helped your leg shaking; mine, no. still trying to find something that will.

the more i read the more it seems a protocol of 2x3 times/day got passed down from somewhere. seems arbitrary. agree totally with keeping it as low as possible. i normally do 3xday of 20/95 rytary (an extended release c/l).

occasionally, i skip doses/days if i don't feel the need (had to experiment with dosing to learn what my body was saying - and, unfortunately, it was speaking - absolutely need 'some' c/l). but not 2x3/day like the mds's want.