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10-12-2010, 12:12 PM | #1 | ||
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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.
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10-12-2010, 01:04 PM | #2 | ||
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10-12-2010, 01:20 PM | #3 | ||
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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.
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10-12-2010, 08:06 PM | #4 | ||
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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 |
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10-12-2010, 08:46 PM | #5 | ||
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10-13-2010, 11:06 AM | #6 | ||
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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 |
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