Stalevo Dosing Problems
 

My wife was having balance problems, and falling a lot. I increased her 25/100 Sinemet from four to seven times a day plus the medications listed below. This appeared to improve the balance problem, and her Neurologist decided to replace her first three Sinemet with Stalevo which appeared to improve her balance even more. Then he decided on four Stalevo a day without the Sinemet supplement. And, this didn't work . . she became rigid and torpid. (Had to revert to four Stalevo with two Sinemet)
He also tried six Stalevo per day without Sinemet, and that didn't work . . she became rigid and torpid once more. (again we had to revert to four Stalevo with two Sinemet)
Any comments about this experience?

THANKS . . TOM

MIRAPEX, 1.50 mg TID
AMANTADINE, 100 mg BID
STALEVO 100, 25/100/200 QID
SINEMET, 25/100 BID
LIPITOR, 20 mg QD
FOSAMAX, 75 MG TABLET PER WEEK
RAZADYNE ER, 24 mg QD
VESICARE, 10 mg QD

Dear Tom,
You sound like you have a fairly good idea of what works and what doesn't and have a sensible approach and thoughts on the amount and type of medications which work vs those that aren't working so well.
For me having had P.D. for many years now I think you're probably right and the neurologist should respect your observations regarding the balance problems and rigidity.
The rigidity is terribly uncomfortable plus the balance problems which can unfortunately very easily become a huge problem if it results in a fall... think fractured hip, femur etc.
My thoughts on whether to follow the neurologists instructions are by all means let him know and try and get him to see that his drug regime is not working as well as the one you have.
All the best,
Lee

Extreme stiffness during "ons" can be due to an excess of levadopa in the brain, that activates all muscles at the same time. You may have to try smaller, more frequent dosages.

As to Stalevo, I take Stalevo 50 and can't say I like it too much, most of the time I have to supplement it with 1/2 a tablet of Sinemet 25/100, because it stops working when I eat something (regardless of the food's protein contents). I believe I'm clearly undermedicated, but... my neuro has told me not to take more than 4 x Stalevo 50 a day, in other words, not to exceed 800 g of entacapone, for whatever reason.

As to balance: there is orthostatic hypotension that makes us lose our balance when we get up from our seat or out of the car, and then there are the balance/vertigo problems derived from bad lighting conditions (we walk much better in the sunshine than at dusk) and from our inability to move our eyes fast enough to take in and adjust our balance to our "mobile" surroundings, i.e. walking on crowded sidewalks or inside shopping malls, on a beach, etc. can be really difficult.

In my opinion, daily balance exercises (yoga, calesthenics, Tai Chi...) make a great difference.

Take care
Teresa

Stalevo Dosing Problems
 

Your comments are very helpful. It appears that replacing the first three Sinemet with the Stalevo makes the most difference in her case. I can see that by taking five or six Stalevo before bedtime might create excess levadopa in the brain. The first three Stalevo made the most difference in her balance, and “muscle tone” making it easier for her to rise from a sitting position, which is another problem she has had.

And Teresa, your comments about lighting conditions opened our eyes. For it was just last night that she fell against the night stand striking her head and back while pulling a top over her head in subdued light. Of course, she knows to sit while dressing, but doesn't always do it.

I haven't seen any other side effects, including dyskinesia.
The falling really scares me. . . TOM