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Old 07-23-2011, 01:10 PM
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stevem53 stevem53 is offline
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Join Date: Aug 2006
Location: Rhode Island
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15 yr Member
stevem53 stevem53 is offline
Senior Member
stevem53's Avatar
 
Join Date: Aug 2006
Location: Rhode Island
Posts: 1,221
15 yr Member
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Ol' cs knows his stuff about medications...All I can add is my experience

I have had symptoms for 9 years, and was dx in 2004

I did not start taking meds..(Sinemet)..untill about 2006 if my memory serves me right..I took a small dose of Mirapex for a while prior to that, but it didnt really do much

When I began Sinemet, I was taking 3 x 25/100 daily..After a couple of years I had to increase the dose to 3 x 50/200, and found that CR worked best for me

About 2 years ago the CR stopped working..I was going through day after day of walking around like a zombie..I still had some Sinemet 25/100, so I started to take them inbetween doses of 50/200 Sinemet CR

That wasnt working out so well, so I called my neuro and asked if I could change my appointment, and get in there to see him ASAP

He gave me some samples of Stalevo 200 mg, and suggested to take them 3 times per day, and I did..It worked out well, and has continued to work out well since then..Stalevo has been more predictable for me..I have not had too many failed doses, however, Stalevo is notorious for dyskinesia, and it has slowly, progressively gotten worse..Usually, I only get it in the morning when my meds are kicking in, and in the evening when they are wearing off..If I get dyskinetic during the day time, it is usually because I did not take my dose on time, or I am having an absorbsion problem for some reason..My on time was lasting untill about 9:00 at night when I began Stalevo..Now it lasts untill 6:00 in the evening, so my neuro suggested trying to take 4 doses instead of 3 to see if I could get another 3 hours of on time per day..I tried it for 3 weeks, but it didnt work..Instead of getting 3 hours of on time, I was getting maybe one hour of on time, and 2 or 3 hours of dyskinesia..Then I started getting an hour or so of dyskinesia everyday at about 5:00 in the afternoon..That was when I decided that as bad as my off time had become, it was a tad better than putting up with 3 hours of dyskinesia everyday..I was afraid that if I didnt stop taking that 4th dose, that I might have ended up with dyskinesia all day long, everyday

So Im back to 3 x 200 mgs Stalevo per day..I have also been taking 3 x 100 mgs of Amantadine daily for about 2 years as well, but I dont know if the Amantadine is working or not

So I put up with the cronic freezing episodes, and difficulty walking that are a part of my everyday life, after 6:00 every evening..I have not tried Azilect, and my neuro suggested Selegeline to try to get another 2 hours of on time per day, but I havent tried it yet

I have dabbled with Zandopa..I am a commercial fisherman, and I retired in 2005, but still fish part time..I take a heaping teaspoon of Zandopa, in addition to my regular pd meds before I go out, and it works great..I have been doing that for about a year, and it has never failed to keep me almost symptom free so I can do my job..I very seldom take Zandopa unless I am going to work, because it seems to me, that the more L-Dopa I feed my body, the more it wants to keep me medicated without unexpected off times during the daytime

I was experimenting with it during last week to see if I could get a few more hours of ontime, but it seems when the Comtan in the Stalevo is wearing off, the Zandopa wont absorb, and nothing happens..Maybe I have to play around with the timing, but I have been on a roller coaster for about a month now, and Im not up for any experimenting for a while

Also, my past experinces with Zandopa, this was before I started taking Stalevo, is that it wears off very, very fast..It is like somebody pulling the plug out of the wall..Not a good thing if it happens while driving

I am very sensative to med changes now, and it has been the the status quo, that for every change I make, there have been consequences for it..I have been trying to find the magic bullet..If it does indeed exist, it is very elusive

I have thought about DBS, but that is about as far as Ive gotten with that..Im not ready to go through that, and not sure if I ever will be

One last note..In my case, I was forced by insurance to take Sinemet and Comtan seperately, for a month, when I first began this journey with Stalevo..Taking the two drugs seperately was hell, in terms of unexpected offtime, and dyskinesia..Thankfully my neuro contacted the insurance company and told them that I needed Stalevo, and they approved it
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