WHICH IS THE BEST WAY TO IMPROVE OFF PERIODS OF CARBIDOPA/LEVODOPA?

[OREOLU]

Hi,any help would be appreciated as regards this topic.I am currently on 25/100mg sinemet,1& 1/4 pill x4 daily at intervals of 4hrs.This dose and schedule worked for like 6 mths and I am now having occasional off periods.My MDS suggested I switch to rytary or decrease the intervals,thus increasing the dose of sinemet.He also suggested adding another drug to extend to effect of sinemet.If you have been in this type of situation before,please,do not hesitate to respond to this post.All I am trying to do is to avoid taking too many drugs,so as to reduce the side effects,especially dyskinesia.What did you do when you got to this stage?Please help.

[Hidden]

Hi OREOLU:

Some options:

1. keep your current dosage the same, but do these things:

a. don't eat anything during the 2 hours before you take a dose

b. do intermittent fasting (e.g., skip breakfast)

c. reduce protein intake (if it is too high)

d. eat most of your protein later in the day

These food/eating things take a lot of discipline, but they can make a big difference in how much of the levodopa is absorbed, and you may even be able to reduce your current dosage...

2. start taking entacapone with your sinemet (maybe the drug your doctor suggested to extend to effect of sinemet?). This will allow your to lower your dose from 1 and 1/4 tablets per dose to 1 tablet per dose, perhaps even lower... Alternatively switch to Stalevo which includes the entacapone (more convenient since there are less pills).

3. Rytary is a fine choice too, but be sure to check what it will cost you . (Note you could also take this with entacapone.)

4. Sinemet CR is also another option (may be cheaper than Rytary). (Note you could also take this with entacapone.)

FYI, I take Sinemet CR and regular Sinemet (IR) (only as a jump start) and entacapone 3 times a day at 5 hour intervals (5 AM, 10 AM, 3 PM).

Btw, it seems like you may have a good doctor, and should really get his/her recommendation on the best way for you to proceed...

[Fed1000 in reply to Hidden]

Hi,

how do you organize your intermittent fasting?

[Hidden in reply to Fed1000]

Hi Fed1000:

I only eat between 11 AM and 7 PM (i.e., 16:8). This allow my first dose (5 AM) and second dose (10 AM) to be taken with no food in my stomach and all or part of my small colon... This makes the response to the levodopa more predictable... Especially between the first and second doses... And when I eat at 11 AM, I guess this food is in the small colon at the same time as the second dose (even though it had an hour head start) and therefore the absorption of the levodopa might be attenuated by protein of that food, that is why I try to keep most protein for dinner (after my 3rd dose at 3 PM) when it can have the least effect on levodopa absorption...

Interesting Facts:

ajronline.org/doi/abs/10.22... ajronline.org/doi/abs/10.22...

"The (small colon) transit time ranged from 15 minutes to 5 hours. Eighty-three per cent of the cases had a transit time of less than 2 hours, and the mean transit time was 84 minutes."

Also, I think that a lot of PWP have very slow transit times, including stomach emptying (but I don't have a reference for this handy)...

[Fed1000 in reply to Hidden]

Thanks.

[OREOLU in reply to Hidden]

Thanks pdinva. How long have you been taking entacapone and what about its side effects?

[Hidden in reply to OREOLU]

I am on my 4th day. The only thing I noticed so far is that my urine turned a deeper/brighter shade of yellow...

[OREOLU in reply to Hidden]

Cool,if that's is the only side effect,you will experience.Time will tell,and good luck.I will discuss all the medication options with my MDS .I doubt if I will be able to sustain Rytary,due to cost,but I will try to get assistance from the Pharma manufacturer.I understand they give discount.You were right with the fasting,II noticed even after taken generic sinemet,an hour later,after eating some protein,the cogwheel rigidity comes back strongly.But on eliminating protein completely,leaving it for dinner,no off periods but drug controls symptoms only for 2 hours.Before,I used to get positive effect from sinemet for about 4 hours,with strict adherence to standard rules of avoiding protein before taken dose and after.

[Kwinholt in reply to OREOLU]

I too take entacapone (Comtan) with my afternoon and evening doses of my cd/ld and it does help. The only side effect I’ve have is the same darker urine as stated previously. While I’m a firm believer in exercise , in the fasting and also in watching were you fit your protein in and any other alternatives that help us , that being said , if I didn’t take my cd/ld I wouldn’t be moving . My PD started with dystonia not a tremor and when I take my cd/ld it relaxes my dystonia it does not create it as some people say. But that is my journey and I am so thankful that cd/ld is available to us . Take care . Karen

[marnegro in reply to Hidden]

Can you disclose to me whats’ happening to you at the off’s? You know everyone is different. I’m hospitalized right now because in just 14 days I jumped from normal nights sleeping ( going bathroom myself to pee, wake up at morning wash my mouth dressing up myself) to get immobilized up to my neck need 100% wife help from bedtime until kick up of first morning dose. We are looking for something else but neuro is inclined to believe this is what expected based the progress of MY particular case.

[park_bear]

If you are taking the immediate release version of Sinemet, the simplest way to reduce off periods is to switch to Sinemet CR, or the generic version which is known as carbidopa levodopa ER. For some strange reason the immediate release version seems to get prescribed by default. Rytary is also a time-released version which would serve the purpose.

Carbidopa levodopa does not halt progression. For the long-term consider high-dose thiamine and also celery seed extract: healthunlocked.com/parkinso...

[OREOLU in reply to park_bear]

Thanks park bear.

[JohnPepper]

I am very interested in your problem and am genuinely trying to help you, although it may appear to be a way of getting you to do something you don't want to do.

Are you aware that levodopa does ABSOLUTELY NOTHING TO SLOW DOWN THE PROGRESSION OF PD? That means that you are continually getting worse, just in order to feel better for a constantly reducing period of time.

What is the alternative?

If you were to start to do fast walking, even if you are only able to do it for a very short while, your brain will start to produce a natural chemical called GDNF. That stands for Glial Derived Neurotrophic Factor. Glial cells are the cells that get damaged by Pd. Neurotrophic means NERVE REPAIR OR REPLACEMENT. That means you have a natural repair kit in your brain. In order to produce more of that GDNF you should try to develop the habit of waling a s fast as you can, very second day, up to a maximum of one hour each time.

As you start to improve you will be able to reduce the levodopa medication and eventually come off it entirely.

ARe you aware that levodopa has several serious side effects. The worst of which is called Dyskinesia, which causes you to make awkward and embarrassing jerky movements. Some people think that is Pd but it IS NOT! Another side effect is Dystonia, whci causes your toes to curl up. You don't need that either.

What I am telling you is not popular with the medical profession or the drugs industry. But it is best for YOU!

If you would like to learn more about walking then visit my website - reverseparkinsons.net and contact me. I will try to help you for no cost at all!

[OREOLU in reply to JohnPepper]

Thanks Johnpepper I have been doing fast walking already.

[JohnPepper in reply to OREOLU]

Tell me more about the fast walking you are doing please. If you are not doing it as recommended you may not get any Pd benefit at all.

[OREOLU in reply to JohnPepper]

Before I started taken medication,I used to have balance problems,but I noticed that whenever I walk fast,the symptom disappear.So my fast walking regimen,is doing 1 mile walk every other day,starting slowly at first, for about 1/4 mile,gradually increasing my speed.

[JohnPepper in reply to OREOLU]

HI OREOLU. It is not bad to do a warm-up, before walking fast, but your goal is to walk fast for one hour, three times a week.

For how long do you think you are currently walking fast?

Your balance is OK when you are walking fast because you are using your conscious brain to control the walking. With anything you do consciously you should have no Pd problems! Pd does not affect the conscious brain; that's the bit behind your forehead.

[OREOLU in reply to JohnPepper]

45mins.

[JohnPepper in reply to OREOLU]

How long did it take you to get to that level?

[OREOLU in reply to JohnPepper]

1 month post diagnosis.

[JohnPepper in reply to OREOLU]

Do you mean you have only been diagnosed for a month?

[pbacon2549]

Have an evaluation for DBS (Deep brain Stimulation). Can help control the off periods. Some people may not need any to little SInemet initially. Every one's road is a little different, continue the journey.

[OREOLU in reply to pbacon2549]

Thanks pbacon2549. My doctor said,he will have to explore the medication option first,he doesn't think I am ready for DBS.

[Coot18]

cannabis is good supplement in addition to Sinemet and B1