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Old 07-10-2016, 09:44 AM
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I_Got_it_2 I_Got_it_2 is offline
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Join Date: Jan 2011
Location: Pacific Southwest
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Quote:
Originally Posted by soccertese View Post
not to defend the drug companies but they have tried to address ON/OFF with long lasting agonists, especially the REQUIP AND MIRAPEX XL and NEUPRO PATCH. Any drug that you take orally and is affected by food, protein interference, stomach emptying is always going to have variablity in it's affect. that's why there's a sublingual apomorphine, inhaled l-dopa and extended release amantadine in the pipeline so we can deal with OFF better.. it sucks, i agree, especially if one can't tolerate/afford these longer lasting drugs.

i have one suggestion, start the day with one simple 25/100 or 1.5 tablets, that will get carbidopa into your blood which is just as important as l-dopa. when you start to go off, take another 25/100. if you don't come on in 45min, then there is something wrong with your digestive system. you might have to take a 25/100 every hour but at least take it for your first 2 doses of the day as a "diagnostic" tool. after you come on with 1-2 doses of 25/100, then take the rytary. i do this myself with CR, after the first (2) 25//100 i'll take 50mg with 200mg CR and will get 3-4hrs of on time. i'll repeat the pattern, i don't like taking (2) 50/200 in a row.
protein is my enemy too but i try to eat a breakfast and think i have a better overall day, i find boxed soups like tomato, sweet potato are low in protein and i'll add some veggies and add a 25/100 to my normal dose if i don't come on or just accept being off after eating, if i lose self-control and eat a cup of yogurt i know it will be 2.5-3 hrs before i can take C/L, any sooner and zippo.

Which is why i bit the bullet and got into the DBS line. at our stage no matter what we do C/L is not going to do the job. either not enough dopamine receptors, oral l-dopa gets destroyed too fast in the brain, dopamine receptors get over/under sensitized. remember, cells are responding to changing l-dopa concentrations by changing enzyme levels of enzymes that mfg/breakdown l-dopa at unnatural levels so they're alway undershooting/overshooting.

fwiw, for those with intolerable OFF/ON and can't tolerate or can't get the adequate relief from agonists and can't/won't do DBS, there is the DUPDOPA but hopefully neuoderms L-DOPA pump which doesn't require surgery will soon be available. interestingly, you get higher doses of l-dopa than you do orally but less dyskinesias. and if you go off the continuous feed l-dopa and back to oral and the benefit lingers.
Thank you for the advice soccertese. Something you said really got my attention. You said " if you don't come on in 45min, then there is something wrong with your digestive system." About 5 years ago I was having horrendous bloating one night along with overall discomfort and pain so much so that I went to the Emergency Room. After an allnighter and relief primarily from vomiting and defecating the doctor told me that I had some growth in my upper gut from gall bladder surgery some 25 years ago that was slowly choking off my intestine. He said if it gets worse I may have to have surgery to cut it away and clear it up. Have only had another major occurrence once and after vomiting was fine.

Thanks again for the advice. I will try a variation of your suggestion.

Jim
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