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Hi. I am 63 yrs. old with 7 yrs. since diagnosis. Currently, I take .75 mgs. levodopa every 2 hours from waking ’till evening. If I take less or extend the time between doses, I am “off.”
I’ve come across statements over the years suggesting the author was able to reduce or eliminate levodopa (sinemet). I have never been able to verify these claims. Because Parkinson’s is progressive and incurable, I wondered if anyone has been able to do so after several years of regular use (not initial equilibrium)?
Kind regards, Richard
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People who have had DBS surgery can often reduce or go off C/D entirely. Like you, I have only seen it increase over time; my dosage has been on the rise lately with 3 increases in the past 12 months.
When claims of reducing dosage come up, I first ask what they are doing that makes their symptoms improve. There is either a cause or a misdiagnosis, if you ask me.
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Like you, I have had Parkinson’s for about 7 years. My levodopa amount increased regularly until I was at the max dosage my neurologist would prescribe. It was then that I seriously considered DBS. I have since had the surgery and would highly recommend it if you qualify for it. It has been a complete game changer for me! I am slowly reducing the medication, and I feel great! I just got it turned on about 3 weeks ago, so it will still be a while, but I hope to get down to 4 pills a day eventually.
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I was diagnosed with PD in 2009 and have been on the same dosage through all these years (25-100 three times daily). I guess I’m lucky that it has progessed slowly, but in the past few months tremor has been quite bothersome. I am trying out PS128 (an advertiser on this site) because one small study found that it reduces Off-Times). I am now beginning the th ird month and the only thing I’ve noticed is that I have become more regular.I would sue like to hear about anyone having success with alternate therapies.
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I have had 2 L/C increases this past year. It helped the off times I was having about 30 minutes prior to my next dose. I can usually tell when its close to the time to take L/C. It mostly starts with my inner Parkinson’s acting up and/or RLS and/or pain in my legs. That said there are times when I realize that I am well over an hour past due for my scheduled dose and I feel fine, absolutely fine. During these times I think maybe I should ask my neurologist if I can reduce my meds. Does anyone else ever feel like they did before Parkinson’s? I have most all of the symptoms people have listed in the “what are your symptoms thread ” yet there are times I feel well and wonder about not taking L/C which has been so helpful. I started taking L/C just after diagnosis. I really would be interested if anyone was able to stop L/C and function well without surgery. Based on what is now known about Parkinson’s and dopamine it doesn’t seems possible.
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I have noticed the same phenomena, ie. not feeling worse when late dosing C/L. And I’ve also noticed feeling worse 15-30 minutes after taking C/L. I’ve tried to avoid protein 1-hr before and 1-hour after taking C/L.
Thus, I too have wondered about reducing C/L dosage. I am trying to do this by substituting mucuna-pruriens for part of my former C/L dose.
Anyone else?
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I was diagnosed in 2008 and have maNaged to do w/o meds thus far. I do take supplements that include mucuna puriens. The supplements are from a company called CHK Nutrition and must be obtained through a doctors office. I found a dr who worked with these supplements by calling CHK NUTRITION and asking them for alist of Dr’s who ordered their product in my area. (Houston).
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