Ater this patient reduced his medication slowly and carefully over more than a year, the violent ticcing stopped and his original tremor – a small, fluttering, weak movement – reappeared, amazing him and his family. For the first time, the family members were willing to admit that possibly the violent ticcing was a drug-related twitching – not tremor, a normal symptom of Parkinson’s disease. The violent ticcing showed no signs of slowing until he got down to 300 mg/day (from his high of 1000 mg/day) and stayed at this lowered level for three months.
Another patient had violent twitching throughout her body until she decreased from a high of 400 mg/day down to 50 mg/day. When she had been at 50 mg/day for nearly two months, the violent shaking abruptly ceased, and she asked me why she was doing “this really annoying, weird, little flutter thing.” When I told her that that was her Parkinson's disease tremor, which was the reason she had started taking the L-dopa, she was amazed. “But the jerky twitchy stuff was much worse than this! Who would ever take drugs that cause that violent stuff just to temporarily mask this stupid tremoring?” I had to point out to her that in point of fact, she had done just that.
“But I thought the twitching was the tremor!” she bleated. “That’s why I kept increasing my drugs!”
“But I told you that what you had was drug-induced ticcing. I said every week that what you had wasn’t tremor, and you didn’t believe me. I pointed out that muscle twitching was listed right here in the list of adverse effects of the drugs.”
I'm thinking of reducing to avoid developing dyskinesia, or at least put it off, Do you have a better solution?
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JAS9
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My levodopa strategy is simple. I am following the advice of Roche, as stated in their Madopar PI document (i.e. Prescribing Information):
"The appearance of involuntary movements should be regarded as a sign of levodopa toxicity and as an indication of overdosage requiring dose reduction. Treatment should, therefore, aim at maximal benefit without dyskinesias."
If the high-cadence cycling, mannitol, etc. etc. do not halt (or sufficiently slow) disease progression, then I can expect to start experiencing dyskinesia at some stage. I will then attempt to adjust my doses and/or my medication times in order to once again achieve "maximal benefit without dyskinesia". Rinse and repeat.
If this strategy stops working, it will be time to consider other options (e.g. DBS, duodopa pump, ...).
Thanks. My concern is that once dyskinesia begins it might not be so easy to reduce out of it. Maybe it's better to be pro-active and reduce now? That's my thinking anyway.
My dyskinesia has reduced significantly now that I take amantadine. This is even though I've recently increased the strength of my L_dopa meds. I started out with a high dose of amantadine but I am fine now with a half tab twice a day. I take an extra tab on the rare occasions when my dyskinesia is prolonged.
I'm taking 5 Rytary 245mg capsules a day. Rytary is time release and not all of the L-dopa is absorbed, so even though I'm taking 1225mg/day of L-dopa that's the approx equivalent of 850mg taken as Sinemet.
I currently experience no dyskinesia and intend to keep it that way. I was taking 6 capsules a day (about 1000mg/day of Sinemet) but I reduced it a few months ago. At first, I felt some of the old PD symptoms return, but that went away after about 2 months. So now I'm thinking of reducing more, at least until I notice a big long-lasting difference. I figure if this high dose isn't doing me any good I might as well keep reducing it slowly.
I've read that a 10% reduction is safe. My first reduction from 6 to 5 pills was about 17%, but I think I'll go slower now with 10% reductions over several months. One of the reasons I posted this question was to see what experiences others have had doing this. I get no encouragement or guidance from my neurologist.
I have had dyskinesia almost from the start regardless of dose. I am a proponent of taking the smallest possible dose. I take as little as 250mg total per day to as much as 500mg total. I am 10 years in and have been taking c/l for 4 years. I think it is common for PWP to take too much levodopa (in any form) in the constant search for "normality."
I'm also about 10 years into PD. For the first 6 years they tried to give me all kinds of pills, but they all made me sick, so I couldn't take them for more than a few days. Then a new neurologist gave me Rytary and it was great to not feel PD so strongly. Before Rytary my PD was pretty bad; falling a lot, unable to turn over in bed, etc.
Lately, I've been reading a lot about the history of PD. In the 70's they were more cautious about giving PWP big doses. If your dose got too high it was common to be put into a hospital to take you completely off the drugs. Then they would start you on a small dose again. Today, everyone seems so comfortable with the huge doses and my neuro especially doesn't mind giving me more and more. I think a small dose, but enough to keep me mobile is the way to go. I will take it slow, though.
Thanks. I know a little about the Ghana study, and it's convincing as far as it goes. But I'm not talking about whether or not it's best to wait after onset of PD to start taking L-dopa. I'm talking about whether or not, once the drugs have been started, it's best to take as much as you can w/o experiencing dyskinesia (which I'm sure the drug companies prefer), or if it's better not to be that aggresive and hold back a bit. I think that's a bit different and I've decided to hold back and reduce at least until I start noticing a long-lasting significant difference in my PD symptoms.
"... whether or not it's best to wait after onset of PD to start taking L-dopa."
But that is not only what the Ghana trial was about.
The Italians got dyskinesia (on average) after 7 years (7 years since diagnosis, 7 years on levodopa). The Ghanaians got dyskinesia (on average) after 2 years (7 years since diagnosis, 2 years on levodopa).
So there was no benefit in being undermedicated, as far as onset of dyskinesia is concerned. The Ghanaians got no advantage, and they were completely undermedicated for 5 years.
JAS9, in this thread you seem to be talking about 2 different things: undermedication and overmedication.
"I'm thinking of reducing to avoid developing dyskinesia, or at least put it off."
I see this as a strategy of deliberate undermedication, in the hope that it will pay off in the long run. As I've argued in this thread, I believe that such a strategy will not work.
"I've decided to hold back and reduce at least until I start noticing a long-lasting significant difference in my PD symptoms."
I see this as an exercise in detecting and eliminating overmedication. So long as you don't end up sacrificing significant quality of life (i.e. drifting into undermedication), this exercise seems like a good idea to me.
As a mental health professional, I saw so many patients with tardive dyskinesia as a side effect of psychoactive drugs. When I was diagnosed with Parkinson's, I made a deliberate decision to avoid the levodopa/carbidopa combination drugs for as long as possible. My reading has suggested that it is the carbidopa component which is most likely to cause the dyskinesias. I do take one prescribed medication, Mirapex, a dopamine agonist. I have also been following the B1 2000mg. protocol for a year and recently added Dopa Mucuna 2000mg daily. I am 71 years old, 6 years post diagnosis. I feel that I am maintaining a decent quality of life and possibly slowing down progression of this disease.
Forgive me if I have told you this before. There is only one way to reverse some of the movement symptoms of Pd and that is FAST WALKING.
You may not want to do fast walking. That is your choice!
You may think you are not able to do fast walking, but that is a fallacy.
If you can walk, however fast or slow, you can.
These are the rules I suggest for FAST WALKING:
1.Start doing FAST WALKING for no more than 10 MINUTES!
If you can only manage one minute, that is fine!
2.Walk for that time every second day for 2 weeks; i.e. Monday, Wednesday and Friday each week or Tuesday, Thursday and Saturday each week or every second day, with no break at weekends.
If you start at less than 10 minutes then you should add whatever time you are able to increase it by.
3.After each 2nd week, add a further 5 MINUTES onto the walking time. So the 2nd 2 weeks you walk for 15 minutes. Then the 3rd 2 weeks you walk for 20 minutes. Etc.
If you did not add 5 minutes, just continue to add whatever you can.
4.Never walk longer than these times as stipulated!
5.Never walk every day!
6.If you feel that you cannot start at 10 minutes then start at the time you are able to do to begin with and add as much time as you are able every second week, BUT NO MORE THAN 5 MINUTES!
7.When you reach one hour, you do not walk for more than 1 hour, you only try to go FASTER!
It is a good exercise but does not produce GDNF, which reverses Pd. If that is your goal then that is best for the purpose. If you sre only looking for exercise then it is your choice!
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A memory for my mother
Tremor Reduction - Vilim Ball
Interview of Daphne Bryan following the publication of her book: “Parkinson’s and the B1 therapy”.
B1 and madopar experience
PEMF mat therapy update
