Hello Everyone:

I was wondering if anyone has a loved one that you have taken off of Stalevo. My mother has been in constant gut pain for well over a year now and her cognition seems to be on a rapid decline. I am wondering if it is time to stop worrying about her movement issues with the large motor issues from the Parkinson's. Has anyone done this? Did it help with pain? anxiety? cognition? I don't know that it will help, but I see some correlation with her down time between doses of Stalevo and I am wondering if we are dealing with drug dependency here as well. I am considering asking the neurologist to take her off of Stalevo, but I might just be grasping for straws to make things better. Does anyone have experience with this?

Thanks - Liz

Liz,
It is always a guessing game with the meds, the movement issues are important as in helping us help them, once they get so darned stiff and can't move much then the real issues start, so be careful what ever you end up doing but I would do it only under medical advice.

It probably depends on the individual but my husband, on Stalevo for years and changed to Sinemet two years ago, absolutely needs carbidopa/levodopa. Without it he wouldn't be able to move at all nor swallow. The Stalevo seemed to cause urinary problems [sediment] and he does better on Sinemet [generic].

Very good point on the swallowing !

Thank you! People on this list always have the best information. Pat, the swallowing is something I didn't think about. She was on Sinemet ages ago and felt that it had stopped working for her. Perhaps I should ask the neurologist about that as well. My mother is never happy if she has any symptoms at all and I think that for years she felt that if things weren't perfect, they weren't working. Perhaps Sinemet would make the in between dose time less bad? I don't know at all. I just know that she has so much gut pain and it is related to her anxiety and the time that begins about a half hour before her next does of Stalevo and lasts about 45 minutes or so longer after she takes it. Thank you all for your insights.

Liz

Theoretically, Stalevo should be better than Sinemet for 'in-between' coverage. Maybe your mother just needs a higher dose or more often. Of course, the downside of that is increased hallucinations and delusions. These things are always a trade off, alas.

Yikes - and her hallucinations and nightmares are awful. She can't tell reality from dreams at night and in the morning. This is the worst disease ever. I can't imagine living like this myself.

Liz, I just saw this post.

If I remember correctly, when I asked John's LBD specialist about Stalevo, he said that Sinemet was better for LBD patients. He stressed that carbidopa/levodopa was the agent that addressed the movement/balance issues best in LBD folks and that Stalevo had stuff that did not. Since med reactions are such an issue with LBD, I assume that limiting the products going into their bodies is always best.

When he recently adjusted the dosage of John's Sinement (generic), John did improve right away. But if he takes it before eating instead of after eating, he is always nauseated.

Pat