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Topic Sinamet dosages Go to previous topic Go to next topic Go to higher level

By kuttlewis On 2009.06.02 08:00
My brother sent me this and I thought it was interesting. Has anyone else tried this?

"CHECK WITH YOUR NEUROLOGIST BEFORE MAKING ANY CHANGES IN YOUR MEDICATION...LET THE DOCTOR READ THIS AND HELP YOU DECIDE IF THIS THEORY MAY HELP YOU...BY SLIGHTLY CHANGING THE WAY YOU DOSE YOUR SINAMET YOU MAY BE ABLE TO REDUCE SIDE EFFECTS AND TO EXTEND THE NUMBER OF YEARS IT WORKS....STILL INTERESTED? READ ON!...(and no I am not selling anything!)

I am a secondary caregiver as my Father is going on his 12th year with Parkinsons.

The first 5 were bearable and my Mom managed ok. Dad got by without taking Sinamet, though he had a lot of side effects from Mirapex and Artane.

I was busy teaching Science and although I lived close, found it tough to find the time to help out....though I'd often come over on the weekends.

Years 5-10 became tougher as you know...Sinamet was introduced in year 7 and really helped for a while...but in year 11 Dad got Aspiration Pneumonia...spent a week in the hospital and was severly weakened. With slow rehab and excellent physical therapy, Dad improved to about 70%-80% of his pre-pneumonia condition. At 80 years old, most doctors wrote him off. He needed more care but did ok for 2 more years than the hospital doctors gave him. Here we are 2 years later though, and he has swallowing problems during his off periods. He has also developed dykinesias which no neurologist seemed able to help with. Then I came upon this theory in my countless internet searches:

The Pulsatile Theory of Levadopa Administration:
What does this mean? It means the Levadopa (L-Dopa or "Sinamet") you take is in big chunks compared to the natural flow of a non-Parkinsons person.

IT IS BELIEVED THAT IT IS THE TAKING OF SINAMET (L-Dopa) IN THIS FASHION THAT PRODUCES MANY OF THE WORST SIDE-EFFECTS OF SINAMET...INCLUDING DYSKINESIAS, EXTENDED OFF PERIODS, AND DRUG FAILURE.

I did this with my Dad and it really helped! Read on...

What does it mean? It means that when you take a tablet or 2 of Sinamet...the sudden rise of L-Dopa or falling off is stressful, and over time produces dyskinesias...

So if, for example, you take a 2 tablet dose, ask your neurologist if you can take the two tablets 10-15 minutes apart. The first tablet you'd take just a a little BEFORE you normally would...and the second just a little AFTER you normally would...about 15 minutes apart may work (AGAIN...ASK YOUR NEUROLOGIST FIRST!)

WHY? By dividing up the dose you try to take the first tablet a little early JUST BEFORE your previous dose wears off. It keeps the L-Dopa level from falling too fast or too low....then the second tablet can later "buoy" up the dose level, BUT avoiding a sharp spike.

My father takes a dose of 1 1/2 tablets 6 times a day. He had horrible peak dose dyskinesia, transitional (in between dose) dyskinesias, and bad extended "off" periods and drug failure. I began dividing his doses in 3 half tablets, each 10 minutes apart...

HUGE DRAMATIC IMPROVEMENT....70%-80% BETTER IN ALL AREAS.

I am just writing this because NO neurologist advised me about this. IN FACT, they looked at my Dad...and shrugged their shoulders and said, "Well, 12 years with Parkinsons....and....what can you do?"

I brought this idea to a great neurologist at the Veteran Administration in West Los Angeles and he helped me outline the dosing schedule.

Though my father's has it tough, at least this has eased his discomfort some...

REMEMBER, THIS THEORY ADDS NO OTHER NEW DRUGS & SIMPLY FINE-TUNES THE SINAMET YOU ARE ALREADY TAKING...IT MAY ALLOW YOU IN THE FUTURE TO TAKE LESS SINAMET... PERHAPS...

Again, ask your neurologist...BETTER YET, ASK 3 DIFFERENT ONES AND COMPARE THEIR ANSWERS... ASK QUESTIONS... BE RELENTLESS... OPTIMIZE YOUR EXERCISE, DIET, AND SUPPLEMENTS (VITAMINS, ETC.) AND YOU'LL MAKE PROGRESS,

Good luck...I hope this helps someone....in the name of my Dad...Ed
Love ya Dad...Steve"

By Pearly4 On 2009.06.02 18:01
I've read this before but have had no opportunity (my mother resists changes) to try it. It seems an incredibly difficult schedule to maintain at higher more frequent dosages with any consistency, however, I'm not poo-pooing it; I'd love to try it, and may push my mother to accept it or mention it to her neurologist at her next schedule visit. Her dosages are much higher than you state, and her dyskinesias, (while they don't bother her) are pretty bad. We bumped to 6 x a day to overcome a mid-afternoon slump; might be with this schedule we could avoid that by bumping a partial dose earlier (in effect, eliminating a dose).

Seems to me it goes along with the liquid sinemet dosages which involve small sips almost continuously but is obviously even more difficult to maintain. Apparently it has good effect as well.

A good reminder for me of something else to try.

By LOHENGR1N On 2009.06.02 19:24
Several years ago they were testing a pump system for delivery of Carbidopa/Levodopa. it sounded and looked promising however the buzz about it slowed and stopped. I don't know what trouble they ran into but it seems it went the way of most discoveries with this disease. Seemed to work for awhile, then effectiveness dwindled. Let's hope Your Dad benefits from the adjustment for a long time. Take care, best of luck and hang in there.

By lynn On 2009.06.03 22:24
the pump system is currently in phase 3 trials. It's called the duodopa pump. It's inserted surgically like a feeding tube. The pump has been in use in Europe for several years. There is a problem with infections from the insertion site.

By kuttlewis On 2009.07.15 09:20
I'm bringing this back up because, by accident, I got to see the results. They gave John one Parcopa and one Comtan around 2 o'clock before they send him home in a van. He was immobile and it usually took a strong driver to lift him out of the wheelchair into his normal chair. I would give him 2 x 10/100 Sinemet. Forty minutes later, he would be mobile without much dyskinesia or confusion and would promptly fall asleep in his chair. Other times, we would have long conversations or watch a program. The incredible pain in his legs would ease, his toes uncurl, and he can walk.

The doctor had reduced his levadopa to one third of his normal dose even though I protested. Now he's starting to double the Parcopa, but that's only two thirds of his normal dose since Parcopas are 25/100. By just adding a 10/100 some time later has made all the difference. It's absolutely awesome.

By isurfjava2 On 2013.05.26 05:08
I wrote that post years ago. My Dad has since passed away at 84 from multiple bouts of aspiration pneumonia. However I stand by what I wrote before. Paring the doses down and/or titrating them is the secret to controlling Dyskinesia and increasing medication effectiveness, longevity and patient quality of life. Not a cure all, but it works. Also when patients are dyskinetic they are most likely to aspirate creating danger for pneumonias. This technique does requires slow gradual changes and observation, watching the clock some an good record keeping is essential to help you and your doctor (IF theyre good) fine tune the schedule. FIRST check with your neurologist, then make a medication chart with doses and times and a place to make notes on how the patient reacted. I hope this helps!

By parkinit On 2013.05.26 09:34
The pump is successfully being used in Europe.

My spouse and I are working on this type schedule ourselves. He takes a pill 30 minutes before his regular dose and this seems to work out some serious off timings he was having. He has to remember to take these pills, though. He has them in a pack. Sometimes he remembers, sometimes he doesn't. He just knows if he starts feeling bad, it may be time to take one of the "extra" doses and he has a maximum of 4 of these per day.

I will say that my spouse is considered "end stage" per his neurologist (only says this to me, not to PWP), so they give us great leverage with adjustments to dosings as long as we stay within in "doctor-approved daily dosage."


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