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.

[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?

[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. 🤞