quiting sinemet
 

I have advanced pd. Dx 2000, I've been on sinemet for 10 plus years. I have stopped all other drugs like antidepressants and Requip for at least 3 years. I gave up smoking, alcohol, coffee, sugar, and rarely take supplements. So, it's just me and my sinemet. My first dose takes an hour and 10 minutes to kick in. I'm very sensitive to eating anything and going off. I have dyskinesia and dystonia problems and wearing off and wearing on problems. Sinemet seems to takes care of everything when I'm on. I try to not medicate at night as sinemet seems to work better given a break in time. Some mornings I can move and get dressed and shuffle a little before my meds kick in and some mornings it takes a life or death effort to take my first meds. On my worst mornings I can't sit up to drink and let two 10/100s dissolve in my mouth.

I like everyone else with pd would like to get off of sinemet. We are told it is impossible and we will die trying. We are told our brain cannot produce dopamine. We are told by who?

My current medication schedule
6AM Stalevo 100 and extra 10/100 generic sinemet
7:30 10/100
9AM Stalevo 100
10:30 10/100
12 Noon Stalevo 100
1:30PM 10/100
3PM Stalevo 100
4:30 PM 10/100
6PM Stalevo 100
7:30 PM 10/100
9:00 PM Stalevo 100

I'm baffled. I quit taking sinemet twice and what happened didn't make sense to me. Both times were the same. I woke up in the morning or was awake at 6AM. (I rarely sleep more than an hour or two at a time and spend most of the night half awake as is typical of many of us with pd. My body wakes me up when it wants more drugs most of the time I survive the discomfort and wait until 6AM to take them.) This morning I was able to stand up, get dressed, and just by whim and defiance headed for the kitchen without taking my drugs. I made myself not shuffle and took long steps while walking. This ability to walk lasts at best a few minutes. Normally, I have fresh fruit first thing out of bed. An apple or two or some other prepared or ready to eat fruit is all I have till my drugs kick in. I'm too weak and stiff to wash an apple or cut up or peal an orange. I'm doing good to get a knife and cut the apple in half. I eat my apple at my computer and wait for my drugs to kick in. I know when my drugs are about to kick in as my feet and calves will start to cramp, curl and wiggle. I don't know why it takes over an hour for my drugs to work. It used to take 15 minutes. They used to always work and now there are days when no go. Then I'll wait until 10:30 to take a 10/100 and wait another hour for relief. Today I didn't take any drugs. I ate my apples and then got up and walked maybe 400 feet to the end of the driveway and back. Then I walked out the back door down a large stairway and up another stairway for another 400 feet. I wasn't "on" but I wasn't off either. I was able to take long normal strides with no shuffle or toe curling without drugs since 9PM the previous day. I actually felt stronger as in more relaxed and more awake (brain fog) than I normally do when "on" drugs. This is the first time I've been able to walk like this without drugs in the better part of 10 years. Of course it was the firs two time I didn't takes drugs in this manner. The first day without drugs I went for short 400 foot walks and managed to take long strides every couple of hours. I had fairly gentle dystonia compared to my normal "offs". I ate cautiously out of habit even though not taking drugs should have let me feast. I slept especially well. The second day when I got up I was "off" but free of any cramping and toe curling. It was 32 hours without drugs. I could walk without shuffling but my body was very heavy and I felt slow. I was amazed that I could get around fairly well and that the body aches and pains I feel when "off" where gone. As the day went by I couldn't believe how long I had gone without drugs. I also felt myself over a period of 12 waking hours, from 6AM to 9PM or exactly 48 hours without drugs, get slower and slower. I was going off and going deeper and deeper into a world that only people with advanced pd can know. I felt little pain but it was getting harder to think, talk, move and when offered something to eat I knew that was not going to happen. I was becoming afraid and started thinking that now was the time to start taking drugs before it was too late. My whole life was "on" / "off" at the mercy of sinemet. If I didn't take sinemet there was no more on. I was falling into a state I was afraid to even think of. How far width I have to go to get to where I would be unmedicated. Was it going to be difficult to breath like the "hard off" state of sinemet addiction?

Both times I stopped drugs I found myself in a slow but steady decline during the last 12 of 48 hours. Both times I took drugs at 9 PM . Both times I felt very uncomfortable starting back into drugs as if I didn't know how to get back on. Both times it was much more painful and difficult getting the drugs to work than normal.

Questions:

How was I able to walk normally for the first 24 hours?
Why did I deteriorate the second 24 hours?
Does my experience fit any model out there or are we all just living the big lie?
I felt NO withdrawel symptoms at all! Why?
I thought I would go into some killer off state from hell by abruptly stopping. What gives?

Quitting sinemet
 

It may not be possible. There seem to be overlapping cycles of dependency involved with some measured in weeks. Have you ever known a former smoker who responds to a stressor by needing a smoke real bad, even though it had been fifty years since his last?

You will definitely need to taper off and perhaps for months. And you might want to look into low-dose naltrexone. It is already used to treat addiction.

Hello SHCG
I have had PD for 20 years now, and I am in the process of weaning myself off Sinamet. (taken as Stavelo). If you drop it too quickly, it can actually be fatal. You need to taper it off over months, dropping the dose very slowely. I am now on 100 mg levodopa per day.I take 50 mg.at 8-00 am, I am on until 12-00 or even 1-00 pm. I tke 25 mg at 12.00 which lasts until 4-00pm when I take another 25 mg. I am now 75 years old.
I get up about 6-00am and unmedicated i can wash or shower and get dressed and do all my jobs like letting the dog out etc. This is getting more difficult. I go on the computer until 8-00am when i take my first meds.
You are taking 1,000mg, this is far too high to stop altogether. I thought i was safe at 100 mg to try stopping altogether. I was great for the first 2 days. but day3 was very bad and i had to restart on Stavelo. I now plan dropping to 75mg for a month, 50 mg for a month then stopping.
Sinemet is a very powerful drug. Look up "Neuroleptic malignant syndrome". This is the illness caused by stopping too quickly.
Take care.
Ron

Ron - what is enabling you to cut down on Sinemet? Someone mentioned you were involved with a research project (I forget the name), I emailed them to find out more (I am in Brighton) but never had a reply.

Trixiedee

Hi trixiedee,
You have to realise that when I cut down my levodopa, I suffer for it, I am far from normal, but I suffer so much from dyskinesia when I take it, I am worse off. I am an advanced sufferer, for over 20 years. I don't have a neurologist, I attend a London hospital instead and they take care of updating my drug regime and monitoring my status with a number of tests, but only using approved drugs, no experimentals.
I am convinced that long term usage of supplements like curcumin have slowed my progress, which has helped. Another good supplement is citicoline which is given to stroke victims to aid brain metabolism. Avoid constipation and have occasional periods of laxative /fibre clearouts. Constipation releases more toxins than you realise. I thnk also i am natually a slow developer. I was still running a $75m pa turnover chemical factory over 5 years into my PD.
Ron

Have you tried liquid sinemet...can make yourself and cut back more gradually...also making the dase you are taking more evenly distributed during the day??? Check old posts on how to make it yourself...it does helP!!

Hi Ron
You are always such an inspiration. How much Sinemet were you taking at the maximum, before you cut back?

Ron,

Weren't you a moderator for Janice W-Hadlocks' PRP yahoo chat group? I haven't seen you mention this and just have to wonder if you might fall into the partially recovered category.
sharilyn

Bad Idea...
 

...trying to quit sinemet. I am 55 yrs old, first symptoms approx 1986, diagnosed correctly 1990. After approx 10 years, I tried working with one highly regarded doctor, under his belief that I didn't have PD. His reasoning is not significant to this discussion. What is significant is that I tried to taper off my sinemet. The process was torture and I was totally incapacitated. It took FIVE YEARS of this tapering off, and the lower I went in dosage, the more I suffered.
Bottom line: I tapered down all the way to 3 sinemet (25/100) per day. I was unable to get out of bed or a chair or walk or talk and finally gave up on the doctor's approach. I went back to a reasonable amount of sinemet, along with several of the add on's. With 20/20 hindsight, I wish that I had quit after 5 weeks!
Don't do what I did. The symptoms and side effects that we suffer is a picnic compared to those 5 years. I hope I save you some agony.
Keith K.

Quitting Sinemet,
 

Hi Atma, The maximum Sinemet I reached was 800mg per day. That was around 9 to 10 years ago. I think it was long term use of curcumin and citicoline that enabled me to steadily cut down, driven by horrendous dyskinesia.

Hi Moondaughter,
No, I think you have got me confused with someone else. I was never involved with the group you m,ention. I was a member of Pipeliners for a couple of years, an Ame rican group. I am now an Ambasador for Parkinson's Movement, a UK group.
Ron