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Tjon

Sinemet Question

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So, it looks like I’m going to be part of this club as well...

For the last two or three years, I’ve been having problems with my arm and hand.  I own a restaurant which I work in and it has been a difficult couple of years.  I’ve had several nerve release surgeries that didn’t really help.  Abount two years ago, an orthopedic sent me to a Nuerologist who said he was 80% sure I had PD.   I didn’t really believe him and thought he was just reacting to my family history (my dad has Parkinson’s).  About a year ago, I went to an MDS.  They weren’t really sure that I had Parkinson’s but they gave me a prescription for Sinemet.  I was to start slowly and work up to 2-1/2 pills, 4 times a day.  I only sparingly tried the Sinemet and ended up skipping my follow-up appointment.  I was still suffering but I really thought it was something else, like a nerve impingement or something.  

Fast-forward to today...after the carpal tunnel and cubital tunnel surgery didn’t really help and after feeling some symptoms in my right leg, I have started to take the Sinemet again (about 3 weeks ago) and am up to 2 pills (25/100) per dose which I am taking about every 4 hours.  I have not been taking a fourth dose in the evening because I don’t really need to use my arm and hand extensively when I’m at home relaxing.  So, basically 6 am, 10 am, and 2 pm is my schedule.  I have also taken some weekend days off, but usually end up taking a dose by afternoon when I can’t move my fingers and my forearm and shoulder are killing me.

The Sinemet seems to be helping.  My fingers on my right hand go from slow and weak to pretty fast and stronger.  It’s still awkward but I can also use my arm better and it hurts a little less.  My one-handed hand claps go from almost impossible to decent.

i have an appointment with the MDS in two weeks.  I’m anticipating that she will confirm PD once I tell her/show her about how I am reacting to the Sinemet.

Ive been reading this board for a few weeks now and while I am still quite depressed, reading everyone’s stories helps me feel less alone.  I’m 50 but I’ve always been pretty active and so this is hard with both my current symptoms as well as the fear of the future.

So, on to my Sinemet question:  Will my response to the drug improve the longer that I’ve been taking it?  Also, if so, would I respond better if I took it a fourth time in the evening instead of skipping that dose?  Currently, I’m getting about 3-1/2 to 4 hours of “on” time, and I have come to know what that feels like.  So, I guess what I’m asking is “Is there a cumulative effect where the Sinemet works better/longer if I take it longer/with less gaps or am I seeing the best result that I am probably going to see?”  I guess if there’s no cumulative effect that I’m missing out on, I’d rather be able to skip nights at home, weekends, etc.

Thank you!

Tjon

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Sinemet can control symptoms for several years. You could ask Dr. Okun in the Ask the Doctor part of the Forum for a more complete answer. Exercise is best for delaying disease progression. PD is a snowflake disease, with each person reacting and progressing differently.  

Dianne 

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Tjon,

I agree with the above statement from Beau's Mom.

In my 2.5 years experience with sinement I can tell you that I get about 12-15 hrs of on time with my current regime. I take 1.5 pills of 25/100 CL aka sinement and 1mg pill of Azilect at 7am then I take 1 pill of 25/100 CL every 3hrs till 7pm.  When I go to bed at 10pm I take a 1/2 pill of regular CL and a pill of 50/200 extended release for over night. This has worked very well and I can say that for about 10hrs of the day I am 95% free of symptoms then in the evening when I am tiered I am about 75% free of symptoms till bed.

My thinking is why be sore and stiff when I don't have to be.

I hope this helps. Feel free to ask any question you would like.

Good luck

Adam

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Tjon,

I would suggest taking Sinemet only when you really need it. I wouldn't take it at night if I didn't really need it. There is such a thing as dyskinesia which is a side effect of long-term use of Sinemet or other drugs like it. This is something you want to avoid. Of course, remembering that we are all different.

 

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Hi Tjon,

I have to disagree with the above post - Sinemet is not like Ibuprofen (take only when you have  pain).  My understanding is that Sinemet has a long duration effect and a short duration effect.  It works best if taken on a regular schedule regardless of symptoms at the time of your next dose.  Some people (including me) find that it keeps them awake at night and adjust their schedule so that the last dose of the day is not too close to bedtime.   I use an extended release at bedtime which seems to help with that problem. 

I'm in my 7th year since diagnosis and, like Adams, get almost total relief of symptoms unless I'm under stress or very tired.

Good luck and keep us posted.

Gardener

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I agree with gardener totally,

I did significant research before deciding to take Carbidopa/Levodopa aka sinemnet. There is no evidence that suggest C/L is solely responsible for dyskinesias based on the amount you take in a given day. I have met and talked to several people who take over 1000mg of c/l a day and do not have dyskinesia. 

Dyskinesia happen with a combination of disease progression and use of sinement. One study that is in its infancy suggest that dyskinesia happen when a chemical in the brain called GABA starts to diminish because Parkinson's disease has progressed to a point to affect its production in the affected part of the Parkinson's brain. The brain Chemical GABA acts like a throttle on a car, it meters how much dopamine reaction is need when the brain sends a signal. When that is no longer present the signal gets over intensified and you get dyskinesias. 

Remember, when big pharma came up with there synthetic dopamine called agonist, they spent millions discrediting C/L so they could reap billions in profit for their new creation with terrible side effects. This stigma still exist today even though big pharmas studies have been disproven. 

Want you to have the whole story when you make your decision

Blessings

Adam

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On 3/12/2018 at 5:34 PM, Beau's Mom said:

 

Thank you to all of you for your responses.  

I am struggling very hard with this new reality but am glad that there are caring people out there that can extend a kind word and share their experience.  

I am still slightly confused about whether there are different quality levels of "on time" with Sinemet based on duration and frequency of use, or whether all "on time" is basically the same.  I want the best quality response that I can get during working hours when I need it, but once I get home and am relaxing, its hard to take that fourth dose if I don't really feel like I need it to function (laying on the couch watching TV).  I would probably do it though if it meant that sticking with a more complete dosage schedule meant that I would function better overall.

Oh well, I see the MDS at the end of the month.  I am pretty sure that she will confirm PD based on my symptoms and response to the sinemet trial.  I have been in denial for a couple of years now.  I am hoping that learning to accept this will help me start to feel like myself again.

Thanks Again!

 

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Tjon

In my personal experience, I am better off taking an evening dose even if I feel like I don't need it.  I find that when I skip doses in the evening, the next day will not be as good.  There is some buildup effect over time as well as you adjust. 

From your initial post, you seem to be on a high dose for someone that is just starting.  If I am reading correctly you are titrating up to 1000 mg/day?  That's a big dose.  When I first started I ramped up over several months to 600 mg/day and found out the hard way that this was actually too high and causing some fluctuations (took almost a year to realize that).  I added entacapone and reduced to 300 mg/day and am much better now. 

Everyone is different but I would recommend asking your neuro about dose schedule and if what you are currently on is too high.  It is possible that the rapid titration to a high dose was for diagnostic purposes and not intended as long term therapy. (Some people are resistant to the lower doses, so some docs like to push the dose to make sure they aren't missing a benefit, for those patients that don't initially respond.  It sounds like your response is not so much in question at this point though).  The usual starting dose is 300 mg / day. 

The transition to your potential new reality may be hard but just remember that PD and happiness are not mutually exclusive.  Many people are scared by the idea of a progressive disease, myself included, but progressive symptoms don't need to result in progressive unhappiness.  Stay positive and enjoy the benefit that getting your meds dialed in can offer. 

 

Ed

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benderet makes a good point.  In my understanding a person titrates up until the maximum benefit is found (or passed) then titrates back down and stops at the lowest dosage that gives the best symptom coverage.  As for me, when the dosage made me feel worse then I knew to titrate back down.  It's a dialing in process. 

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