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What's best for tremors and rigidity, with least side effects


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#1 Sandy16

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Posted 05 March 2012 - 12:20 PM

Hi...I would really appreciate some advice from those living with the disease...I like my doctor, but he's never had to take the medications!
I was diagnosed almost 9 years ago at age 41. I consider myself one of the "lucky" ones being I've ony been taking medication for about the past year and a half or so. I am currently taking Carb/Levo 25-100mg, 1-1/2 pills twice a day (although the rx states 3 times). I have been refusing to try Mirapex or Requip for years as I work full-time, behind a desk all day and hear the sleepiness can be pretty bad. Lately though, the tremors and rigidity are progressing and becoming really quite bothersome. I am also starting to notice a slight tremor on my left side (so far it's been strictly on my right).

My question is, are Mirapex or Requip my only real options at this time? I'm SO scared to try either one. Or should I try the Carb/Levo 3 times a day (somehow I don't think it'll work much better).

Thanks!

#2 Jay-Jay

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Posted 05 March 2012 - 03:29 PM

Hi Sandy,

I was also diagnosed at 41 (in 2004), my symptoms started on the right side, have recently progressed to the left side as well - and tremor was one of the biggies. I took Requip for a while - it never did anything for the tremor..actually I'm not sure how much it did for me at all. It did make me sleepy, and just kind of messed with my head a bit. Not to the extent of a gambling addiciton thank goodness - but there was definitely something going on that made me just want to get off the medicine. I've never tried Mirapex, and won't - won't take Requip again either.

When I switched to Sinemet - that was much better. It still can make me drowsy, but it's usually for a short period of time after taking the pills, so if I get up and walk, get some fresh air, get a drink, etc... I can usually get through it okay. My tremor was pretty stubborn though - Sinemet helped, but not nearly enough. I had DBS in 8/2009 and the tremor in my right hand has been virtually non-existent since then.

I'd definitely try to "optimize" the Sinemet (like Dr. Okun says :)) - see how much Sinemet will help you when you take as much you need..before trying anything else, anyway.

Hope that helps!

Janet

#3 Sandy16

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Posted 06 March 2012 - 09:41 AM

Thank you Janet! It sounds like we have quite a bit in common and I really appreciate your input about the Requip. I am going to increase my Sinemet to 3 times a day and see if that helps. I've noticed it makes me tired shortly after taking it but, like you, if I get up and move around it makes it better.

I didn't know it was possible to get DBS until you had tried several different medications, so that's encouraging too.

#4 Oakman

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Posted 06 March 2012 - 11:29 AM

I have tremor and stiffness on right side and take carb/levodopa and Amantadine. I started taking Amantadine a year ago and it has been very effective in reducing stiffness and allowing me to exercise more strenuously.

#5 CynthiaM

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Posted 07 March 2012 - 12:43 AM

I also take Carb/Levo 25-100mg but I take mine every 2-3 hours as needed up to 8 times a day. Carb/Levo wears off. Taking it twice a day instead of 3x probably wasn't giving you the benefits that taking it more often would.
Life isn't about waiting for the storm to pass......It's about learning to dance in the rain.

#6 thlthl

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Posted 21 March 2012 - 01:22 PM

Hi...I would really appreciate some advice from those living with the disease...I like my doctor, but he's never had to take the medications!
I was diagnosed almost 9 years ago at age 41. I consider myself one of the "lucky" ones being I've ony been taking medication for about the past year and a half or so. I am currently taking Carb/Levo 25-100mg, 1-1/2 pills twice a day (although the rx states 3 times). I have been refusing to try Mirapex or Requip for years as I work full-time, behind a desk all day and hear the sleepiness can be pretty bad. Lately though, the tremors and rigidity are progressing and becoming really quite bothersome. I am also starting to notice a slight tremor on my left side (so far it's been strictly on my right).

My question is, are Mirapex or Requip my only real options at this time? I'm SO scared to try either one. Or should I try the Carb/Levo 3 times a day (somehow I don't think it'll work much better).

Thanks!



#7 Beau's Mom

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Posted 22 March 2012 - 06:36 PM

Welcome, thlthl. I too had stiffness and rigidity as well as tremor on my right side for years, but I didn't have a confirmed diagnosis until it had already moved to my left side. I take 1 1/2 Sinemet 4x/day, upped twice since last July. They tried me on Requip and I think Azilect early on but I had negative side effects to both. If your doc said three times a day, I would try that rather than Requip, especially if you are still working. Employers tend to frown on sleep attacks while at work, I think. Posted Image
Dianne

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