Finding the Right Dose of Levodopa

[cgreg]

Hello, everyone. I am having a problem trying to find the right dose of Carbidopa/Levodopa 25/100. The problem is that 1/8 - 3X daily seems to be insufficient at times (e.g. resulting in freezing) while ¼ - 3X daily seems too much (e.g. either a feeling of extreme stiffness OR feelings of being too loose and difficult to control). In addition to C/L, I am taking ¼ pramipexole 0.25 in the morning plus another ½ pramipexole at night. Any suggestions would be greatly appreciated.

[PixelPaul]

These seem like extremely low doses. Are you working with a MDS?

[cgreg in reply to PixelPaul]

Yes, my MDS neurologist even has a PhD in Clinical Neuroscience in addition to his MD degree. He also finds it puzzling how I manage to get by on such a low dosage. He also suspects that I am one of the small percentage of patients who are sensitive to levodopa which makes it difficult for him to adjust the dosage. My doctor actually started me on 1/2 C/L 100/25 dose two years ago and I managed to lower it to 1/4 after about a year and finally to 1/8 last January. However, there are times when 1/8 dose seems insufficient.

[park_bear]

Stiffness can be a sign of too much or too little C / L, but in my experience feeling too loose is a sign of too little C / L.

[cgreg in reply to park_bear]

Thanks for your reply Park Bear. I will keep this in mind.

[Chockly]

I too take very small amounts, (1/3 and 1/2). When I take more, it increases rigidity! I was wondering who else has that problem?

[cgreg in reply to Chockly]

Welcome to the club, Chockly.

[park_bear in reply to Chockly]

LIPDD - Levodopa Induced Peak Dose Dystonia. More here: healthunlocked.com/cure-par...

[Margot59]

I also use a smaller dose and can't find the real effect. The only thing I realized is that today's (any) dose taken gives results only tomorrow. I also started thinking that I should be taking different doses. The time when the symptoms appear (after taking the dose) is also important. That's why I keep a patient diary all the time.

[Chockly in reply to Margot59]

Interesting to know it has an effect the next day. I too suspect c/l can be cumulative. And I too keep a diary every day.

[LAJ12345]

have you tried working with the 50/12.5 tablets? Might be easier.

How far apart are you taking them? You might need to take a bit more first thing in the morning then lower doses later in the day.

Have you tried adding a dopa mucuna capsule with the doses?

[cgreg in reply to LAJ12345]

Unfortunately, the pills come in 100/25 doses in my country. I take them 4 - 5 hours apart . I was actually considering adjusting my dosages throughout the day. Adding mucuna would probably make me feel even stiffer. Thank you for your response.

[LAJ12345 in reply to cgreg]

That’s annoying. Hard to get any smaller than you cut them then.

It is possible to get drugs compounded into smaller capsules at a compounding pharmacy. I had my husbands ssri pills made into much weaker capsules when he was trying to get off them. They dilute it with ground rice.

It was easy then with a jewellers scale to decrease down from there and recapsulate it for him to finish off the weaning off.

Our dr wrote a prescription to them for the reduced dose that they then made up. I had to get a minimum amount made as there is a minimum cost.

if you can do that I would try taking a reduced dose closer together than you do. It evens out the troughs a bit better.

[cgreg in reply to LAJ12345]

Thank you for suggesting a compounding pharmacy. It would indeed make it easier to get the right dose.

[Chockly in reply to LAJ12345]

Yes, those are the ones I halve.

[Gcf51]

Do you have off periods? If not try 1/4 twice a day.

[cgreg in reply to Gcf51]

I do not yet have clearly defined off periods. 1/4 in my experience makes me feel too stiff (I walk like the zombies in "The Walking Dead" TV series.) Thanks for your suggestion.

[park_bear in reply to cgreg]

Not as sensitive as you, but, too much levodopa makes my affected leg stiff and hard to walk on.

[pantologist]

The 4 to 1 ratio of L to C may be the problem. The only way to change this is to get a script for 25mg of C only, start w 1/4 tab then add 1 capsule of Dopa Mucuna (60 mg L) which gives you a 10/1 L to C ratio, then adjust ratio from this baseline. This is exactly what I'm doing starting today as I begin my Carbidopa/Levodopa journey.

[cgreg in reply to pantologist]

This is such an interesting suggestion. Please let us know how things turn out for you in the coming weeks.

[Esperanto in reply to pantologist]

It remains a mystery to me why some countries choose a standard ratio of 25/100 for carbidopa/levodopa, while others, like France, use 10/100. After all, Parkinson's disease doesn't differ from country to country, does it? It seems to me that it would be wiser to use lower doses of carbidopa, especially in the early stages of Parkinson's. However, even in more advanced stages where the recommended maximum dosage of 200 mg of carbidopa per day is reached, 10/100 can be used to minimize side effects.

Sinemet 10/100

[PKLC]

I too had difficulties with side effects of C/L at first. I take 1.5 at 10, 4, and 10. It seems like at times I could use a lttle bit more at the 4 pm time slot. Or perhaps a little bit more at 10 am as it has been 12 hours since my last dose. Either way I think the body is experiencing a slight depletion that it needs bolstering. Maybe upping one of your first or second doses by 1/16 or 1/8 might be just enough to replenish your body's needs. It's worth tinkering with to fine-tune and see if it provides relief.

[cgreg in reply to PKLC]

You are absolutely right, fine-tuning the dosage is the key. Good luck to both of us in our search for the right mix. Thanks for your suggestion.

[eschneid in reply to PKLC]

PKLC........ .. ....Seems like you could use a Mucuna capsule at that initial 10 am dosesof the day and at 4 pm. I suggest NOW brand Mucuna Dopa. One capsule is equivalent to 60 mg of Levadopa. That might hit the spot & it's not expensive. Lmk if you give it a try.

[Margot59]

I also tried to calculate the cumulative effect of my doses on the link parkinsonsmeasurement.org/t.... If you know when you have on, off phase or dyskinesia on the graph, then you can know how much L-dopa you carry over to the next day.

[cgreg in reply to Margot59]

Thank you so much, Margot, for referring me to the app. I will take a closer look.

[Jaguarorbust in reply to cgreg]

Definitely use the Parkinson’s measurements website, it’ll tell you exactly what’s going on - you can flex your timing or dosage to keep in that Goldilocks zone - can speak highly enough of the website!

[cgreg in reply to Jaguarorbust]

Thanks for the encouraging news. I will definitely look into it.

[cgreg]

I read somewhere in a post here on HUCP that someone would dissolve C/L tablet/s in a bottle of water and drink the solution gradually throughout the day. I would greatly appreciate getting feedback from anyone who tried this approach.

[17Hillview in reply to cgreg]

I was going to suggest this. When I first started on pramipexole, my neuro had me do this. Say dissolve 1 tab in 2 cups of water. Then 1 cup becomes 1/2 a tab, 1/2 a cup becomes 1/4 tab etc. Just adapt this technique to your needs.

Also, pramipexol increases the effectiveness of Sinimet, I am wondering why you are bring subscribed this at all at this stage.

Best of luck.

[cgreg in reply to 17Hillview]

I have been trying out the technique of taking C/L dissolved in water for the past two days and the results seem to be encouraging. Pramipexole was prescribed for my Restless Legs Syndrome. Thank you so much for your suggestion and best of luck to you, too.

[17Hillview in reply to cgreg]

Hi again, PD for some persons comes with leg related symptoms like Dystonia and Dyskenisia. I am wondering how certain your restless leg syndrome diagnosis is. Was there ever a time when you were taking the sinimet without the pramipexole? Just a thought...i'm not a doctor, just speaking from my experiences 12 years into this journey.

[cgreg in reply to 17Hillview]

The RLS returns when I stop taking the pramipexole and the symptoms disappear when I resume taking the meds. The diagnosis seems to be quite certain. Thanks for your concern.

[mitochondria]

Hi   cgreg , is it possible that the cumulative effect of C/L and Pramipexole too much sometimes?

As many have pointed out, stiffness can happen with too much or too little medication doses.

Why did your neurologist put you on Pramipexole in addition to C/L anyways - is it to keep C/L doses low? Pramipexole is the evilest option out there in my opinion - my first neurologist prescribed it upon my young onset PD diagnosis at 44 ‘considering my age and didn’t want to start me on C/L’. Rest of the appointment he was talking to my husband about watching over my shoulder for impulsive behaviors, online purchases, gambling online, etc. I was on it for a year before I had a lesser known side effect - sleep attack - I knew I was away for ‘full 30 seconds’ in a work meeting I was running and that was the last day I took it. No amount of warnings will prepare for upcoming disasters ☹️ A couple of threads from this forum:

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

C/L dose may depend on many factors, onset age, how long someone has had the disease, activity level, diet, etc - all of us are not the same and not on all days. That said, C/L effect may be maximized by fasting and keto diets. Even if you cannot fast (for low BMI or other reasons), you may want to try eating all your protein in the night (protein interacts with all types of dopaminergic meds/supplements - including mucuna), and taking your meal one hour before or after the meds. And yes - body remembers and keeps score, if I have my night time meds dose, the next morning dose works sooner.

Personally I am on OMAD (One Meal A Day dinner) Keto diet and on mucuna (same as C/L in terms of stiffness)/ashwagandha since 2019 - can take fasting over unpredictability of if a certain daytime meds dose is going to work or not. Fasting is so natural that once we get used to it, eating the “old way - multiple meals/snacks throughout the day” will feel weird.

The most comprehensive presentation on the subject of PD - history, motor and non-motor symptoms, medicines and side effects (including the “sleep attack” I had), exercise, therapies is this presentation below by Dr Matthew CL Phillips… supposedly meant for Junior neurologists audience but we all can learn a lot. Link below.

Wish you the best.

youtube.com/watch?v=8J-NJMO...(Not working as expected?)

[cgreg in reply to mitochondria]

Thank you so much for such a detailed reply, mitochondria. I was prescribed pramipexole for Restless Legs Syndrome. I will surely take note of all the information that you provided. Thanks