[bldavidson56]

i am seeing my MDS on monday because i have dystonia about 3 days out of 5. it's almost totally unpredicable in time during the day, duration, and severity, but it's almost always painful and disabling. i'm going to ask if he can suggest anything to ameliorate what is probably part and parcel of taking sinemet. does anyone have have suggestions? thanks, barb

[pkell]

I don't know if it is directly related to Sinemet or not. The curling toes and leg cramps were some of my worst pre-diagnosis compaints. The were completely taken care of by Permax. I was the poster child for Permax until it was pulled, but did not fare so well with Mirapex and Requip. I ended up on Sinemet alone and it was completely ineffictive on the dystonia. In time I got on Neupro which worked pretty well but of course as soon as I got to the point that it was really effective it too was pulled. At that time my only choice was to try one of the old agonists again. Going up on Requip VERY VERY slowly worked and as long as i remember to take it on time (which is something of a problem for me) I am relieved of the most severe cramping. I have been told that the agonists are more effective for dystonia than Sinemet. It is certainly true for me, but Sinemet has never been a wonder drug for me.

Good luck,
Pam

[pegleg]

Don't you just love hearing answers like: "It is and it isn't related to L-dopa (Sinemet) long-term therapy." But I am afraid that is the answer.

I will look up references later and post, but trust me for now. There is no real way to determine how much of the dystonia (writhing and twisting of muscles) is caused by long-term L-dopa therapy or if it is the progression of Parkinson's itself. But for those like me that suffer from it, I can truly say it is worse pain than childbirth (and that's BEFORE epidurals!)

The treatments available are lowering of sinemet dosing, adding COMT like Comtan or Stalevo, adding agonists (Mirapex and Requip), apokyn - generic name: apomorphine (given by injection for severe on/off periods), and DBS (which doesn't work for everyone, but does allow sinemet to be lowered for some). I take Comtan (200 mg 3X day) and Requip (10 mg a day) and take five or six 25 /100 Sinemet tabs daily. Sometimes taking just the Sinemet (I take it is fourths or halves) will relieve the dystonia, but the only thing that does help me with the pain is Loratab (hydrocodone). My neuro wrote an Rx for me to take 2 a day, but I try to only take one or one-half. I realize how addictive it is.

Onen more possible "treatment" that has not been scientifically proven (but just ask Aunt Bean!) is to take dopamine via a natural source (fava beans, mucuna puriens, etc. ) Peoplel say the natural source of L-dopa does not cause dystonia.

But just the advancing of the disease causes dystonia, also. We need more studies on this malady. I don't have much more to say on this issue and was surprised that more people did not respond. Maybe we're alone in this one, barb (but I doon't think so.)
Peg

[lindylanka]

I would agree with Peggy about dystonia not being just about sinemet, mine pre-dates taking meds, and is now worse than it used to be. What meds do seem to do is exacerbate it when wearing off, I try to deal with this by keeping the doses on time, but will admit to being useless about timing, and my own worst enemy! I am toying with the idea of splitting doses now, as I hate the wearing off and the inevitable pain, for which I haven't found anything that works well enough for me to want to take in the long term.

Lindy