[Peony]

Hello all, it's been a while since I've posted. I'm having a very bad day. It's been 3.5 years since my diagnosis, with mostly just a big tremor in R. hand, until the last few weeks. Now I also have painful, almost crippling dystonia in my R. leg and foot: toes curling under, ankle turning under, cramping and stiffness, giving me a big limp that makes it very difficult to walk. Quite upsetting and depressing. I had resisted meds due to concerns about side effects, relying instead on exercise and supplements, but finally 8 months ago my MDS convinced me to try carbidopa/levodopa 25/100, 1 pill 3 X day. It didn't seem to help the tremor at all, so she increased it to 2 pills 3 X day a few weeks ago. The dystonia started to develop about 3 months ago, but has really gotten bad since the dosage increase. I worry that the dystonia is meds-induced and wonder if I should stop taking them. Any advice or experiences with dystonia would be greatly appreciated. I know you can't suddenly stop meds, but how gradually must it be done if I want to try it? Many, many thanks.

[lurkingforacure]

Originally Posted by Peony

Hello all, it's been a while since I've posted. I'm having a very bad day. It's been 3.5 years since my diagnosis, with mostly just a big tremor in R. hand, until the last few weeks. Now I also have painful, almost crippling dystonia in my R. leg and foot: toes curling under, ankle turning under, cramping and stiffness, giving me a big limp that makes it very difficult to walk. Quite upsetting and depressing. I had resisted meds due to concerns about side effects, relying instead on exercise and supplements, but finally 8 months ago my MDS convinced me to try carbidopa/levodopa 25/100, 1 pill 3 X day. It didn't seem to help the tremor at all, so she increased it to 2 pills 3 X day a few weeks ago. The dystonia started to develop about 3 months ago, but has really gotten bad since the dosage increase. I worry that the dystonia is meds-induced and wonder if I should stop taking them. Any advice or experiences with dystonia would be greatly appreciated. I know you can't suddenly stop meds, but how gradually must it be done if I want to try it? Many, many thanks.

our former neuro, who I think has probably the best grasp of how different drugs actually function in the brain, what a concept, told us long ago that sinemet does nothing really for tremor, and that was also our experience. Unfortunately, the mirapex does, and while we hate the side effects, our two attempts to get off it so far have failed. I guess my point is, since sinemet doesn't really help with tremor, at least not for us, taking more of it definitely won't do anything but add more side effects. Might want to do some research about tremor-specific meds, there are excellent comments on this forum about that.

[Peony]

Thanks for your response. What I've heard from other PD people and from my neuro is that Sinemet can help some people with tremors, but not everyone. Doesn't seem to do much for me, but I'm sure she'll just say take more! I'm very wary about taking Mirapex, since I've also heard many bad things about the agonists--sleepiness, cognitive effects, addictive, compulsions, etc., so I'll try to avoid that if possible.

[made it up]

Originally Posted by Peony

Hello all, it's been a while since I've posted. I'm having a very bad day. It's been 3.5 years since my diagnosis, with mostly just a big tremor in R. hand, until the last few weeks. Now I also have painful, almost crippling dystonia in my R. leg and foot: toes curling under, ankle turning under, cramping and stiffness, giving me a big limp that makes it very difficult to walk. Quite upsetting and depressing. I had resisted meds due to concerns about side effects, relying instead on exercise and supplements, but finally 8 months ago my MDS convinced me to try carbidopa/levodopa 25/100, 1 pill 3 X day. It didn't seem to help the tremor at all, so she increased it to 2 pills 3 X day a few weeks ago. The dystonia started to develop about 3 months ago, but has really gotten bad since the dosage increase. I worry that the dystonia is meds-induced and wonder if I should stop taking them. Any advice or experiences with dystonia would be greatly appreciated. I know you can't suddenly stop meds, but how gradually must it be done if I want to try it? Many, many thanks.

Peony,
I've found dystonia to be very responsive to levodopa.
Perhaps if you try less sinemet at a time more frequently and still in total for 24hrs have amt neuro prescribed?
That and or try adding something like comtan to lengthen your ons and therefore reduce the dystonia?
Cheers

[lurkingforacure]

Originally Posted by made it up

Peony,
I've found dystonia to be very responsive to levodopa.
Perhaps if you try less sinemet at a time more frequently and still in total for 24hrs have amt neuro prescribed?
That and or try adding something like comtan to lengthen your ons and therefore reduce the dystonia?
Cheers

We do this also, it means taking pills every two hours and having to split pills as well, but it works better than anything we've tried, and as our drug-savvy former neuro pointed out, taking smaller doses of levodopa throughout the day is much better for the system than the larger doses which tend to cause the spikes we all try to avoid. The problem, just to forewarn you, is that sometimes that smaller dose is really not enough to get things going and stay going. We've played with taking a whole sinemet in the morning, then half throughout the rest of the day (not so good), and variations on that theme, but honestly, so far the best we've been able to come up with is the half a sinemet every two hours. It's not great, and a lot of days are pretty crappy, just being honest, but we are trying to avoid starting down the dyskenesia road as long as possible. Don't be afraid to experiment with the dosing as long as you tell your doc what you are doing, and you might want to ask him/her what his recommended max of each drug he's scripted for you is.

[Mari-Mari]

I had a similar problem with L-dopa (Sinemet). After stopping Mirapex (side effects, but it worked well for me for 8 years), I began Sinemet (25/100 3x daily). I tried this for 4 months because it seemed to drs. that I was under-medicated in terms of dopamine). I tried to take the Sinemet, but the more I took, the worse the side effects became. The dystonia (twisting leg & foot) became worse 45--60 minutes after taking the Sinemet .(I also had dyskinesa from time to time). Eventually that would stop, but often repeated itself after the noon pill & evening meds.
With my drs. agreement, I tapered off the Sinemet and was off it for about 3--4 months. I had very little dystonia, but a fair amount of weakness when I walked, etc.
When I (& dr.) decided to resume it, I took 1/4 of a tablet once a day for several weeks. I next took 1/4 tab two times a day. I'm currently taking 1/4 tab three or four times a day. If I take more, the dystonia and dyskinesia set in.
The amount of meds one takes seems very individual and a lot of it is just very much "trial & error". It also seems to require thinking about side effects---ones you can tolerate, etc.
Good luck with the dosage!
Mari-Mari