Dear Txn,
My, you have been through a lot - even more than many of us - and most have our own nightmarish stories of the journey to definitive (ha!) diagnosis.

Please mention the idea of name-brand vs. generic - most docs will say they are both the same, but I used to work as a psychiatric social worker, and, believe me, some drugs really are different as generics - for some patients. So it is not the placebo effect - though that is getting more coverage these days! - these folks had no idea which they were getting. Sinemet is the only generic I have had trouble with personally.

Sounds like you aren't going to stop until you get answers - good for you! Hang in there.

Dorothy

We cannot take the generic sinemet and can only use brand name. Virtually ALL insurance companies require generic be used unless the doc specifically writes in name brand, and is prepared the justify the additional cost. We learned this the hard way.

If you google name brand v. generic, you will find, as we did, that the changes between the two can be huge, from time of release, to how long the drug lasts, to what fillers are put in there (which also affect absorption), and on and on.

Finally, don't expect that great sinemet "honeymoon" everyone talks about. We never did get it, and when we didn't, began to assume the worst. The doc said a lot of folks don't get the honeymoon, and that, like for us, the sinemet simply does not do that great a job with symptomatic relief. Like they say, everyone is so very different. He later also told us that the sinemet helps mainly with rigidity and muscle pain, but does little to help tremor....while the mirapex helps with tremor but does little to help with rigidity/pain. Wish we'd known this at the start of our PD journey, it would have kept us from wondering so many things!

I think more of us than not have had a rocky road to diagnosis. It took me three neuros and a hand surgeon to get one. As far as sinemet, eventhough they insist upon calling it the "gold standard" it really doesn't work well for me either.

I have been diagnosed 9 years, was the poster child for Permax until they withdrew it. Went on sinemet because I didn't tolerate requip of mirapex. I developed dystonia in the backs of my legs and feet that the sinemet didn't touch. Went on Neupro until the withdrew it (a repeating theme.) Then went back to Requip very slowly and it has helped. I'm nearing a top dose of it now and additional sinemet doesn't make up for the waning effects of the requip. Even taking twice as much does not make any difference. So there are some of us that don't really respond well to ldopa and still have PD (probably.) Ah denial, don't ya love it.

Don't really have any advice except maybe try an agonist. Worked for me.
Good luck.