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Old 10-12-2011, 10:25 AM
Sasha Sasha is offline
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Join Date: May 2007
Posts: 206
15 yr Member
Sasha Sasha is offline
Member
 
Join Date: May 2007
Posts: 206
15 yr Member
Default THanks, everyone!

Bob, you description of Sinemet reaction was masterful and very compelling! You captured it, whatever "it" is. If anything, your reaction is a bit worse than mine....which I now think is related to the generics I take though the "wearing on" phenomena -new to me - sounds plausible too.... for the first year for so I included this seductive poison in my life, I would only use the name brand Sinemet as I had a early bad experience with the generic - I think it was very harsh, and just didn't work well. Then my insurance stopped reimbursing for the branded and I decided I could cope . For a long time I had Teva and that seemed okay, then there was something I had never heard of and now, more recently, Purepac. This is like instantaneous transition from a relatively satisfactory Sinement response to extremely advanced motor fluctuations.

Lindy, you asked about the wallking - if I get physically tired, I may have a day that I can't walk without walker, or I just use a wheelchair - then I'm fine with some rest and that wonderful commody, sleep. With this medication reaction, however, my legs feel like they weigh a thousand pounds each and I just can't control them - I stand there, shaking all over, rooted to the floor, sweating profusely, trying without success to drag one leg forward so I can progress across the room - turns out that crawling is more efficient. Makes getting to the bathroom a real nailbiting adventrue. Usually, I'm best in afternoon, after settling down from morning doses, then fade after dinner.

And, yes, I did increase my dose - to 25/100 every two hours (along with .5mg Mirapex each time I take the sinemet and 200 mg Comptan twice a day) - up to seven times a day. Is this a large dose?

I have a hard time remembering to take on schedule ...sometimes I can't sleep at all at night (just deal with muscle spasms the best I can) until I take my meds around 6 am. Maybe, as Ron says, it is a matter of impurities. (your description of Sinemet's effect is what I used to get, Ron) Anyone know where Purepac is produced? Maybe their quality control is lax.

Bob, thanks for pointing out the political/economic realities of where our drugs come from - it never even occurred to me! I did ask my pharmacist once if I could buy some name brand Sinemet and he said they don't even carry it now. As a big chain, they dispense what the company sends to them - I/m guessing they bought the cheapest thing on the market.

My neuro assumed I was freezing and tryed to get me to walk using some expensive device with a laser light - it didn't help at all because I couldn't follow the light with my feet and just stood there visably shaking head to foot and dripping sweat. I don't normally shake. Or sweat.

Has anyaone seen real Sinemet in the US? Maybe I could get a trial script for some and see if that makes a difference. What do you all think?

Thaks so much for the replies. Bob, best wishes to a fellow sufferer - I'm sorry you are experiencing this, but so relieved not to be entirely alone. Lindy and Ron, thanks for your input. There must be a better way to handle this. Thanks for listening.

Sasha
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