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Old 01-23-2014, 09:44 AM
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
soccertese soccertese is offline
Magnate
 
Join Date: Nov 2007
Posts: 2,531
15 yr Member
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your husband can decide what/when he wants to take, the current drugs treat the symptoms,they don't slow down the disease. there is a possibility that azilect might slow progression but the FDA refused to allow the mfg to claim that after a large clinical trial.
more pd'ers take sinemet than any other drug and eventually everyone takes it if they can tolerate it. it's a combination of carbidopa and levodopa (l-dopa) and has been prescribed since 1970's so hard to believe such a "terrible" drug could be in use for so long by so many pd'ers. l-dopa is a naturally occurring amino acid which gets converted to dopamine in your brain. you probably get 100x more amino acid precursors to l-dopa in 1 egg than is in 1 sinemet tablet yet does eating an egg have side affects? no. if you give a sinemet tablet to someone without pd they might get a little naseus, might lower blood pressure but they don't exhibit the involuntary movements that advanced pd'ers get, like michael j fox, so the side affects are a result of having pd and taking sinemet, not just sinemet.

if you read the side affects of aspirin you wouldn't take it, mfg's are required to report every known problem for a drug on the drug insert.

as far as i know, noone has died from taking sinemet, i've read cases where people have taken 100x the normal dose and lived.

it has been a god send medicine, prior to it life was bleak, you died at an earlier age and were institutiionalized.

there are l-dopa analogs called dopamine agonists which were created as an alternative, they don't treat symptoms as well as sinemet but in early stages work well but might have more side affects such as obsessive compulsive behavior, drowsiness and edema. the advantage is they are longer lasting, you can get them in 1/day formulations and a patch.

i write all this because sinemet works for me after 7 years of taking it and it irks me when someone comes on the board and attacks a drug that works very well for the majority of pd'ers. keep in mind that people that are doing well don't post on these boards, you may not be getting a representative sample.

everyone is different with pd, it's an interesting disease because the patient has to tell the doctor how they are doing, there are no lab tests that can measure a chemical in your blood that tells the doctor how a drug is working. if an agonist works great, then you just take the agonist. if it doesn't work well enough, then you play with doseages, timing. that can take months. if that doesn't work, you can try another agonist. if that doesn't work, you can try sinemet after dosing down from the agonist. or vice versa. if neither an agonist or sinemet works well enough, than you can try both. if that isn't good enough, you can add other drugs. my point is it can be a quick process to find the right drug or months of trying different drug regimes. it's a process and may be a tradeoff of how much your husband wants to deal with taking more than 1 drug, times/day, side affects, cost and how much he wants to reduce his pd symptoms, he might be able to find the drugs that get rid of all his symptoms but it might be just too much work .

there are 2 drugs that i haven't tried but in reading seem to work very well, one is name brand requip extended release, not the generic, and the neupro patch. they are expensive even with medicare. but you never know, 100mg sinemet 3-4 times a day might work great for years. tremor doesn't always respond to drugs.


i suggest you buy a used copy of THE PARKINSON'S DISEASE TREATMENT BOOK for a detailed description of how to figure out which meds work best and The Peripatetic Pursuit of Parkinson Disease
http://psychcentral.com/blog/archive...ever-heard-of/

fwiw i was diagnosed in 2001 at the age of 48. i'm still alive after taking sinemet.

Last edited by soccertese; 01-23-2014 at 10:37 AM. Reason: changed what to what/when
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