I started on Carbidopa/Levidopa today. If I remember correctly, I'm taking .25 mg three times a day for two weeks and then .50 for two weeks. I'm not sure past that.

I have four questions:

1) When can I expect it to take effect?
2) My main symptom is freezing. It's actually WORSE today, as is my stiffness. Is this typical?
3) Has anyone (who has been diagnosed with Parknson's) NOT benefited from taking it?
4) I live in an Assisted Living senior complex (and am the youngest one here!) and am suppose to take it three times a day. Those three times are 8:00 a.m., 11:00 a.m. and 4:00 p.m. That means I won't get any more until tomorrow morning. Is this typical as well?

Any and all help is appreciated.

Thanks ...

Did a PD knowledgeable dr suggest this dose & the time frame for taking?

What about the huge gap of time after the 4 pm does wears off?
Is it an extended release /controlled release or?

From what I know with my dad , he has to keep to regular timed doses day & night. To keep the dopamine level fairly constant..
2 years ago he could make it all night til morning dose, but now in the middle of night he needs a dose.

His dose usually kicks in 20-30 minutes after taking it, longer if with a heavy or protein meal. Protein slows / disrupts absorption.

How bad were your symptoms before any med?
Perhaps the dose is too low, or mis diagnosed, or the med just may not work for you.. but it is pretty much the base main med for most..

Keep in communication with your doctor..sometimes it takes trial & error to find the best combo of meds per person.

Thanks, thanks, thanks.

I always thought that Carbidopa/Levodopa needs to be in the system 24/7 to work properly. Maybe I'm wrong.

Either way, I plan to call the weekend phone number to double check that the orders they wrote are correct. It's better to be safe than sorry.

Thanks again,

Terri

proudest_mama,

You write "I'm taking .25mg three times a day". This is a very, very low dose, which I don't think anyone would prescribe. Do you mean a quarter of a tablet? If so, what is the levodopa dose of the tablet? If I understand your details correctly, you're 12 years after diagnosis. To have gone so long without taking levodopa is either a good sign - if for many years you didn't need it because you had progressed very slowly - or a bad sign in that you missed benefiting from levodopa for years. What other anti-Parkinson drugs do you take?

1. Once you reach your final dose, you can expect the drug to have an effect in about 30 minutes. But as you titrate up to that dose, you may be taking too little to have a noticeable effect.

2. Feeling worse with a small dose than no dose is something I experience. Sometimes I'll be awake and at the laptop most of the night, long after my levodopa has run out (but still within the "range" of the agonists that I also take). I can type, albeit slowly. I put this down to me still having some dopamine producing neurons. But, after I take my morning dose, to begin with things get worse until the dose kicks in and things improve. I put this down to the levodopa either inhibiting my own dopamine production or else clearing it.

3, I think that if you do not respond to a substantial dose of levodopa, you should have you're diagnosis checked.

4. Your dose schedule is not uncommon, but does have the problems that you mention. Levodopa has a short half-life so after 3 to 4 hours it's all gone. However, if you're not too far advanced, your neurons should contain large enough reservoirs of dopamine which together with the locally produced dopamine should tide you over. As the disease progresses you can expect to take more doses.

John

John

Point 2. Interesting, I experience exactly the same night/morning phenomenon.
You may well be correct in your theory of why this happens. One thing I'm certain of is that it has become more noticeable with each recent increase of meds, the most likely culprit being the Agonist.

Nigel

Thanks .. You are correct in that I have had Parkinson's for 11 years now. I was diagnosed at age 44 and am 55 now. During that time I have been taking Mirapex (1.5 mg three times a day) and Artane (2 mg. twice a day). Those agonists have worked for that length of time. I DO have Parkinson's, I've just been really lucky that the combination of those two drugs have kept the symptoms at bay for that long.

I have another (new) question about Sinemet. Does it ALWAYS work for Parkinson's? Has anyone not benefited from it or does it mean that I need a stronger dose? Granted, I have only been on carbidopa/levadopa for one day and I'm not the most patient person in the world. I want results NOW!!

As such, am I jumping the gun thinking it will work after only four doses? I think the dose might be too low but prescribed that on purpose since the agoniists have kept both my tremor and stiffness controlled and the levadopa was prescribed (I assume) for my feet freezing. Is that logical?

Again, I appreciate the insight everyone has provided. It sure helps that I'm not alone with this thing called Parkinsons.

Hi Mama

I'm a similar PD profile, diags. in my 40's now in my 50's, managed on ropinirole
Iv just added another sinemet cr 200mg and it took a month to kick in and then it was mainly my mental health that improved,albeit dramatically.
The sinemet continuous release formulation I'm on is unpredictable so I'm going to try the more stable stalevo.


Nigel

I just double-checked the dose I'm taking of Levadopa/Carbidopa and it's 25-100. The nurse said that this is a good dose and some of the other residents are on that dose.

My question is how long I should wait before consulting my neurologist that it's not working? A week? Two weeks? A few days?

Again, I took my first dose on Friday morning and am getting it three times a day (breakfast, lunch and dinner) so I've only been taking it for three days. Maybe I should ask to be given the medication around the clock or, if nothing else, a dose at bedtime.

Thoughts?

Nigel - where do you live? Just checking!

Terri

If a few days now and still nothing positive is happening , I'd call the doc & let them know. They may say wait a little longer, up the dose or ?
I'd also ask about the long time spacing overnight.

Hi Terri

Northern England, Yorkshire.
My own experience is that the improvement gained by levodopa has never been
dramatic like some describe. I'm definitely responsive and can tell I'm benefiting from it and that it's way more effective than ropinirole.
Three days is no time to assess a response. Personally all p.d drugs take a min of a month to begin to work 'for me' and I usually feel worse first, a peculiarity that has been and is a limiting factor in achieving the correct drug levels.
Remember the motto of all of us living in the land of Parkinsonia "everybody is different"..
Please understand I'm not medically qualified but my opinion based on my own experience of this is give it a month, forget it, Don't dwell on it as stressing will have a negative effect.
If no joy after a month see your Doc, 100/25 mg is a low dose and a month may seem excessive but at least you will be sure the dose is too low and won't be ramping up the meds before you have to.
Just my opinion Terri, others may disagree.

Keep in touch

Nigel