Parkinson's Disease Tulip


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Old 05-20-2014, 11:54 AM #1
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Default Starting PD meds

Hi all,

My Dad is starting PD meds today. This is five years after his diagnosis. His main symptom is tremors.

He is starting out the first week with 100/25mg levocarb once a day at breakfast. The second week is breakfast and lunch. Third week is breakfast, lunch and supper.

He just took his first pill and nervous about the potential side effects. Anyone have any advice for what it is like starting out. I know everyone is different but any advice would be much appreciated.

Thanks,
Sharmila
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Old 05-22-2014, 09:58 PM #2
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Sharmila,
Hope your Dad does great on the "gold standard" med for PD. It has a long history of good results. May his levocarb "honeymoon" last many years!
Robert
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Old 05-22-2014, 10:30 PM #3
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Check the protein/levodopa issue thread. Best wishes. He and I are on a similar timeline I think.
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Old 05-24-2014, 12:57 AM #4
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How long does it take to feel an effect? He is on a low dose and will be gradually increasing?
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Old 05-24-2014, 06:45 AM #5
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When I started Sinemet 25/100 (Levodopa-Carbidopa) I felt better after the 1st pill. I started on 1 pill 3x day for 1st week, then 1-1/2 pills 3x day 2nd week, then 2 pills 3x day 3rd week. Was feeling nauseated at first, but it went away after a while. Now take 3 pills 3x day with 1 Entacapone 3x day to extend the Sinemet and 1 Sinemet ER before bed. Hope the Sinemet works for you.
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Old 05-24-2014, 06:56 PM #6
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I take one

25/100 twice a day and have been on it for two weeks. Much less rigidity, can type again, must be careful with protein.

Remember that everyone is different. Give it some time.
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Old 05-25-2014, 10:14 AM #7
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i received a major beneficial effect on my rigidity after the first tablet.

give it time, it takes awhile for your body/brain/neurons/dopamine receptors/DNA to adjust and you may have to adjust doseages and timing. line NAN said, everyone is different and since less than 10% of l-dopa actually gets into the brain, just how one's digestive system works can affect how much one needs to take. and you really don't need that much l-dopa to get into your brain on a daily basis so one is having to take a lot more than they really need just so that <10% gets into your brain.

the goal is to get the drug as fast as you can into your blood. so drink at least 6oz. of water with each dose to stimulate stomach emptying and one should try to stay as "regular" as possible, getting backed up slows the digestive system and you want that l-dopa to also get into the small intestine as rapidly as possible which is where it is absorbed.
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Old 05-27-2014, 09:16 AM #8
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he is going to 2 pills a day starting today. hope he sees a difference.
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Old 06-02-2014, 11:20 AM #9
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Default Still not seeing a difference

He is about to go to three pills a day tomorrow. He is still not feeling any benefit from the meds yet. He has to report back to the nurse in 2 weeks.
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Old 06-06-2014, 04:32 PM #10
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Default effective life of carbidopa

There is a great deal of information stating that the effective life of CL is 5-8 years. It is my firm belief that it is more of an end stage drug and not a beginning stage drug. The honeymoon effect that a previous post referred to is the period of time during which it works well and does not have horrible side effects.

See http://parkinsons.bsd.uchicago.edu/progression.html
and google useful efficacy of sinemet etc to find more articles.

Before starting CL I suggest trying other drugs such as tremor blocking drugs, agonists, muscle relaxers (relieve rigidity) etc. The reason for this is that with longer use CL does start to cause Dystonia and Dyskinesia which can be more debilitating than the PD itself. Everyone is different.

In my case the doctor I worked with had me so overdosed that I was almost immobile. It turns out I didn't have PD at all and CL was causing all of my symptoms. Its very tempting to take more CL since you do feel better right away. Resist that temptation. Take as little as you can work comfortably with. Increases should be carefully considered. The more you take early on the more side effects you will have sooner. CL quits working as well and as long with time. You need more sooner to maintain. The more you take the worse your symptoms will be.

I really think many of the people taking CL are taking too much and starting too soon. It's hard if not impossible to stop. Search through stopping sinemet and see what some people have had to say. There are several people that have struggled to stop only to find it is very addictive and very dangerous to stop. Stopping the drug does endanger your life.

My hope is to encourage you to educate yourself on the role you want the drug to play in your treatment. It belongs in the later phases of treatment but many people are starting earlier to keep jobs, maintain families, and enjoy their lives which have been suddenly turned on end with diagnosis. You might want to save it to help you when you need it more (when you are older and more advanced in PD). It does really help but many doctors use it inappropriately IMHO.

I've spent the last 3 years trying to get off sinemet. It's been no picnic and the price has been high.

Last edited by d0gma; 06-06-2014 at 05:36 PM.
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