Declining "ON" Time

[TheLordsWeapon]

Diagnosed almost 4 years ago and for the first three years the sinemet dosage was pretty consistent with my "on" time relief.. but in the last 6 months or so I am getting these daily patterns were the first dose of the day (9am) gives the longest "on" time, about 4 hours then there's a decline so when i get to my last dose of the day "on" time is way down to 30 min or so and now I have to take an extra full tab (250mg) to get symptoms, anxiety etc... etc... calmed for sleep mode and then pop my Ambien CR. I have become very wary of facing my mid to late day c/l doses, since their effect is declining.

BTW, Protein has been an SOB for me! right now i skip breakfast and have a 10mg or less protein lunch, then at night a 20mg protein supper and this diet has helped pick up the declining "on" time of the late day doses. But not taking enough protein is not good, very weak, on and off throughout the day

Thoughts? Suggestions?

[Hidden]

Hi TLW,

You should be able to extend your on-time with C/L CR or Rytary (as previously suggested)...

As for protein intake, I am extremely sensitive too... I eat < 10 grams of protein in my first dosing interval and < 10 grams of protein in my second dosing interval, and then eat as much protein as I want in the third (and final) dosing interval... usually this means supplementing the regular dinner meal (which I eat with my wife and which usually contains some form of meat) with a dedicated "protein meal" (which I eat before my wife gets home from work)... Lately this has been 2 large eggs, sausage, and yogurt...

Note if I eat too much protein in my first and second dosing intervals, my third interval is "ruined"...

[TheLordsWeapon in reply to Hidden]

Hi PD,

Yes its a very big hassle, and don't enjoy food that much anymore, lost 21 pounds in the last 6 months... i did try C/L and the levodopa took to long to get intro my blood stream because of a sporadic slow release process making my "off" time go up 30-40 mi

thank you for info and reply, GOD SPEED

[Hidden in reply to TheLordsWeapon]

Hi TLW:

Keep in mind the the availability of CR is 70% of IR. So for example, 200 mg CR tablet is roughly equivalent to a 140 mg IR tablet (so your need more CR)...

Also note, you can mix "instantaneous release" C/L (aka, C/L IR) with "controlled release" C/L (aka C/L CR), so that it take effect quicker...

For example, I currently take:

Dose #1: 200 mg CR + 100 mg IR (240 mg IR equiv)

Dose #2: 200 mg CR + 50 mg IR (190 mg IR equiv)

Dose #3: 200 mg CR + 150 mg IR (290 mg IR equiv)

And if I am disciplined in my eating, I don't go off in this 12 hour period...

Btw, this is the way Rytary works... Inside a Rytary capsule there are instantaneous granules, as well two types of controlled release granules...

That all said, be sure to discuss any changes to your dosing with your doctor!

[TheLordsWeapon in reply to Hidden]

thank you so much for the info, i am going to run this by my Neuro whos pushing DBS,, not me, be a cold day in hell.....

God Bless!

[Sanay]

Hello

These days exactly same thing is happening with my husband diagnosed 3 yr ago.

His 1st dose ( sinemet 125 lasts for around 1.5 hrs)

2nd dose he takes mucuna which lasts for around 3 hrs.

3rd dose is again the same quantity of mucuna which lasts for about 1.5 hrs

4th dose is the same again which lasts for an hour..

We are just unable to figure out the reason the same dose lasts longer earlier in the day and so short later in the day..

These fluctuations are happening so much since just 2 months that we are clueless and scared may be its the rapid progression.

[Hidden in reply to Sanay]

Hi Sanay:

There are many things that can impact the availability/effectiveness of levodopa within a dosing interval: protein intake, meal sizes, gut transit time, gut biota, exercise within a dosing interval, stress, ... consider keeping a regular dosing and eating schedule until you have things sorted, and keep a log of what you eat and when, including the PD symptoms you experience, consider consuming most daily protein after the final dose of the day, ditch the mucuna and go with standard formulations, and consider trying C/L CR or Rytary to extend your on times...

[Sanay in reply to Hidden]

Thanks for ur response..

He was on sinemet 125 since two years and then our neurologist started him with stalevo 150 which gave him bad dyskinesia so we switched back to sinemet 125 but the dyskinesia continued..

So we started with MP and worked up with the dosage and now his dyskinesia is so much better almost negligible on most days hence the shift

[Niggs in reply to Sanay]

Hi Sanay,

I'm the best I've been for a long while, after multiple regimes tried, including Stalevo, I'm now on Sinemet cr (slow release) this 'trickles' the drug into the body, avoiding the 'hit' of an instant release which can trip 'start of dose' dyskinesia. Added to that is the new comt.inhibitor Opicapone. This is far better for me than entracapone which is in Stalevo. In simple terms Comt's get more L.Dopa from the same tablet, without increasing the strength.

Nige

[Sanay in reply to Niggs]

Thanks how much mg of opicapone with sinemet 125 is required?

[Niggs in reply to Sanay]

That would be decided by your neuro. I'm on 5 x Sinemet cr 200mg per day and I'm taking 50mg of Opicapone, I seem to remember there's also a 25mg?. I was taking B1 and Mucuna but stopped these as Opicapone is so new very few interactions are logged. My own half-hearted trials suggest my B1 of 1500mg is now a problem. I also found that Mucuna for me was very erratic in its delivery. It is my belief after 10 years with pd that most problems we experience are due to fluctuating drug levels, which are often assumed to be pd related, that is, a worsening of the condition when in fact it is not. Also, the time it takes to adjust to any change in medication is a minimum of 1/12.

[Sanay in reply to Niggs]

Thanks so much for the great info..will definetly look into it..

[lempa_nik in reply to Niggs]

hi, what does 1/12 mean?

[Niggs in reply to lempa_nik]

One month (1 out of 12). I should've added 'in my case' after that.

[TheLordsWeapon in reply to Hidden]

thx pd

[Hidden in reply to Sanay]

One way to find out if food is interfering is to fast an entire day and watch very carefully.

[lempa_nik in reply to Sanay]

A free online tool that may help give some insight is:

parkinsonsmeasurement.org/t...

This will help you visualize the equivalent l-Dopa levels in his body (black line) as a function of time. With a judicious guess as to the critical effective level of L-Dopa needed to suppress symptoms--progession should make this increase as time goes on--you may get a hint as to why the on times are varying so much. It helped me to time my meds and increase my daily on time from 5.5 hrs to 9 hrs, which made a great difference.

[TheLordsWeapon in reply to lempa_nik]

God Bless you, thank you for this, my current 5 hrs "on" time is slowly driving me insane, especially when awake time is 18-19 hrs, that's a a a a a a a long Day 8(

[lempa_nik in reply to TheLordsWeapon]

I can relate to that! The graphing app that I mentioned guided me as to the time to take two half-Sinemet tablets (immediate release), which is what almost doubled my on time. I had already figured out by trial and error to space apart by 3 hours successive doses of my 3 Sinemet CR (Continuous Release) tablets.

Since then, I have found I can replace each half-sinemet tablet with 2-3 capsules of mucuna . The reason for this replacement is that the mucuna caps are free from the carbidopa (which I distrust) that is included in Sinemet. Without the carbidopa, the mucuna delivers about one fourth as much L-Dopa to the brain, so you have to take more of the mucuna caps to get the same effect. as the Sinemet.

[trishjaustin in reply to Sanay]

Hello Sanay! My husband is 55 and was diagnosed 3 years ago as well. If it wasn’t for the Mucuna, he wouldn’t be walking...Sinemet helps very little. He’s lucky if he gets 1.5 hours of on time. What brand of Mucuna (and how much) are you using? My husband uses Zandopa but finds that every bottle is different in terms of strength and efficacy.

[Sanay in reply to trishjaustin]

Hello

We are using raw mucuna powder from bixabotanical.com.

It is an indian manufacturer and i think it has around 4-5 % l dopa.

We are using it since a month.

Also we experience the difference in strength and efficacy varies from each box.

Just need to adjust the amount in that case.

We are about to try zandopa soon.

Good luck to you.

[Bailey_Texas]

I was having the same problem and have had it that more or les for the last 13 years. I just started a new regiment that is working great.

See my post

For the third time I am trying Entacapone 200 mg .

healthunlocked.com/parkinso....

[larry1945]

This is very similar to what happens to me. Life is hell. I don't know what to do.

[GymBag]

You were diagnosed 4 years ago so what you report looks about right. I will give you my list of medications so you can see you have a way to go. It takes about half an hour to kick in and is good for about 2-1/2 hours. I used to forget to take meds on time but now I easily anticipate it. I always refrain from taking more than the prescribed daily dose. hahahahah NOT. My wife gets herself all worried, when I do that but there is no real problem.

APO-Levocarb 5 doses x 1 tablet (25 mg - 250 mg each)

Carbidopa / Levodopa 7am, 11am, 3pm, 7pm, 11pm

PMS-Ropinirole 3 doses x 1 tablet (2mg)

7am, 1pm, 7pm

PMS-Ropinirole 2 doses x 1 tablet (1mg)

7 am, 7 pm

PMS-Amantadine 3 doses x 1 capsule (100 mg)

7am, 11 am, 3pm

One thing that I find very important. ( Funny how some things get to be so important)

The medication is NOT absorbed in the stomach it is taken up in the upper bowls. If you are backed up, full, bloated, constipated, nothing moving, the train has stopped , the meds can not get on board.

I kind of ignore the protein thing a bit and eat dairy before meds to coat an empty stomach. I more worry about what I am eating to keep that train moving.

All aboard

[lempa_nik]

The Lord's Weapon, I think you meant 10 g or 20 g protein supper. A "mg" is only one milligram, not enough protein for even a sparrow.

[GymBag in reply to lempa_nik]

A sparrow would give you more than one mg of protein.

[lempa_nik in reply to GymBag]

Gymbag , you're a hoot! Your posts often put a smile on my face.

[TheLordsWeapon in reply to lempa_nik]

this is true!! lol my bad..

[20fatcats]

Just wondering if you have been given the new brand of sinemet which they say is exactly the same but Im sure isn't. I have not been the same since. It waers of quickly. I had to change to it beacause of an apparent world wide shortage.Im going to try Madapor instead I think.