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benderet

Sinemet turns into skittles in the evening

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Hi everyone

 

I'm still new to the club (Dx ~ 9 months ago) and here is my latest question for you all.  I've been on sinemet since Dx and currently take about 6 pills (25/100) per day.  I generally get 2-3 hours out of each dose.  However, in the evening around 7:00 pm it seems like sinemet turns into skittles i.e. it seems like it doesn't work well anymore.  Is this something many of you experience, and is there anything I can do about it?  For me other drugs are unfortunately off the table (except some other flavor of sinemet, I'm on IR now).  Taking more helps a bit but also makes me tired.  I have 2 young kids so being functional in the evenings is a big issue for me. 

 

thanks

Ed

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It seems from reading that there is a lot more variation in us YOPD folks.  Sometimes my Sinemet makes me almost normal and sometimes it does almost nothing.  Luckily I get about 6-7 good hours per dose and about 24 better hours so I'm never as bad as before I started it even if one of my doses doesn't do much.  One thing that may be getting in the way is if you eat protein for dinner you need to wait at least a half hour before taking it. You may already know that.  I also take citacholine with my sinemet  to enhance its effectiveness

https://www.ncbi.nlm.nih.gov/pubmed/2289218

best wishes,

Lena

Edited by lenamegan
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What is your actual schedule?  With 6 tabs per day I'm guessing 2 each 3x per day.  But what times of the day do you take it?  

 

Other than increasing the dose (or adding additional doses of the same amount) I'm not sure what might help.  You did say that taking more helps, but at a cost of fatigue.  You might try adding a 4th daily dose, but compressing the other 3 doses a bit.  E.g. if you take your meds at 6AM/noon/6PM consider something like 6AM/11AM/4PM/8PM.  It's not necessary to take the same amount at every dose.  If you wanted to stay at 6 tabs total you could do the 4 doses at 2/2/1/1 tabs each (or any combination that adds up to 6).  That would help level out the meds in your system in the evenings 

 

Are you exercising regularly?  If not try that before messing with changing meds.

 

If you do try anything with changing your schedule on meds make sure you clear it with your doctor first (I'm certainly not a doc).  Also, be aware that you'd need to hold any change for at least a week or two before trying anything else as it can take a little while for the body to fully adjust.

 

I will say that since starting on Rytary I am no having any significant problems with mid-afternoon sleepiness like I was with IR Sinemet.  But, that's at the cost of less effective control of my tremors.  So far, I consider that a worthwhile exchange.  Rytary, being basically an extended release version of Sinemet helps with that sleepiness by leveling out the levodopa in my system.  The initial spike is much lower, but it lasts longer overall in the body.

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Ed,

 

I had some of the issues you speak of with Sinemet. My problem was that it's effectiveness ramped up quickly and fell off just as fast. There's a lot of things you can do, such as moving doses closer together. My doctor ended up switching me to Rytary and even that took about a year to settle on a good dose and schedule. Rytary is an extended release version of Carbidopa/Levodopa whereas Sinemet is an immediate release version of C/L. Talk to your doctor so the two of you can figure this out.

 

Dave

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Lena:  Thanks for the tip on citicoline.  I read up on it and given that there are positive Phase 2 trials, I'm surprised it doesn't get more mention in PD circles.

 

stump: (guessing that's not your real name, and don't I feel like a jerk if it is :-P )  Good questions: 

1.  Schedule is currently 1 pill 6X per day.  I take one about 30-60 min before I get up, and then every 2-3 hours all day, generally trying to avoid meals.  If I'm active I'll take it more often or at a higher dose (e.g. if I'm going swimming at the gym I'll just take another dose, regardless of when my last one was).  I have tried other schedules but ran into issues with side effects.  2 pills at once will sometimes make me so nauseated that I can't stand up (caveat here I'll bring up in a minute).  For a while I had tried 1.5 pills 4x a day but the nausea was unpredictable and fatigue was worse overall.  My neuro recommended the 6X daily schedule but is OK with me experimenting. 

2.  How much exercise do you think is enough?  I get some sort of mild cardio (e.g. swimming with the kids) a few times a week right now, but usually on the weekends.  I commute an hour to work so by the time I get home and get the kids in bed, I usually go to bed myself.

3.  What dose of Rtary relative to sinemet did you switch to (i.e. did you bump up the dose because of the bio-availability difference?)

4.  Speaking of IR sinemet, I found recently that there seems to be a huge difference between generic versions.  I've had the Roche and Teva versions.  The Teva hits me like a bazooka.  Needless to say I told the pharmacist only to give me the Roche so perhaps I can try bigger doses at once again.  

 

thanks all, back now to my 5 year old that counts to 60 when I say "just a minute", and she holds me to it :mrgreen:

 

Ed

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Yeah, not my real name.  I picked that because my PD became apparent after a couple long days of turning trees into stumps.

 

Anyway, to respond to your answers:

1) 6x per day is about as stretched out as you can get.  Don't know what you tried to combat nausea but some things that have worked for me is to eat a little bit of high carb/very low protein food when the nausea started to ramp up.  For me it didn't take much.  A cookie, a cracker or two was usually enough.  The other thing is to titrate (ramp) up slowly.  If you tried 2 tabs all of a sudden that can throw your system for a major loop.  Making changes at half a tablet (or even a quarter tab) at a time can make all the difference.  I never experienced it, but some folks also found that toughing it out for a month or so would result in side effects like nausea going away as their body acclimated to the meds.  

 

2) If you're not puking from overdoing the exercise you can probably be doing more.  I'm certainly guilty of saying more than doing on that front.  But, exercise is the only proven method to slow progression.  A lame excuse, but my cold this weekend prevented me from getting the exercycle back out.  But, I will do that tomorrow (wife got the cold too and is sleeping right now and the bike is in the bedroom).  I'm motivated though by more than just PD.  I want to go halibut fishing in May when the season opens here in WA.  Halibut are a physically demanding fish to land in the best of circumstances, but factor in that I'll be in a kayak, and needing to paddle around 2 miles off shore to get to the spot and being in better condition may be a huge factor in success.

 

3) I went from 1.5/1/1.5 25/100 C/L each day to 3/2/3 Rytary 23.75/95.  That was based on my MDS's recommendation.  The higher dose is due to the reduced bio-availability.  I think that schedule needs some tweaking, but need to talk to my MDS about that.  I might try 3/2/4 though just to see what the effect is of going to 4.  The original prescription was 3/3/3 so if I do that I'm not exceeding the total daily dose.  If I get side effects from 4 I might try 3/3/3 and see what happens.  As long as day time sleepiness doesn't rear its ugly head again I might go with that.  We'll see.  It will likely take a bit of experimentation.

 

4) I didn't notice all that much of a difference in the various C/L generics.  But, we are all different.  I would certainly encourage you to stick with Roche if that works for you.  BTW, Teva sold their C/L line to Mylan.  

 

I will need to get my 4 kids in bed here in about an hour.  Luckily the 2 olders are low maintenance in that respect, but the 2 youngers are 5 and 4 so that take a little more effort.

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I'm lucky to live in a city with a naturopath who specializes in PD and who teaches and does research at Bastyr university.  With the help of her resident and through my own research I've found a protocol that really works for me.  I'm lucky to have a medical background myself and specialize in hard to treat diseases in animals so I am used to researching less known treatments.  Anyway if it's helpful here's the complete list of what I've found helps me with links to some of the studies (I want to expand on this in the future because there is a lot of information out there!)

https://pathwithpaws.com/blog/2017/02/18/using-supplements-to-treat-young-onset-parkinsons-from-lrrk2-mutation/

Also completely agree with Stump on exercise - I considerate daily exercise as important as my meds!  I rotate tai chi and feldenkrais with dance and yoga and walk at least 30 minutes every day if not more.  I completely get it is harder with younger kids.  My son is 19 so I've moved more into a supportive role than one of care.

best wishes,

Lena

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I wish sinemet was a lot more like skittles.  I love them! My MDS was worried about dyskinesia side effects from too much during the day, so I have to ramp down on my dose in the evening to hopefully keep that down.  I take amantadine also. I take ER Sinemet at night to help me get up in the AM.  I have to depend on my wife more and 3 of my kids are older, so they can handle things ok.  I don't like coming home having spent my energy and not have much left to help.   I am hoping DBS helps this. 

 

 

I think my stomach has reached the limit, so I am at my peak dosage at this point. As Lena mentions, I can vary a lot in the days of the week.  "Expect the unexpected"

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I'm lucky to live in a city with a naturopath who specializes in PD and who teaches and does research at Bastyr university.  With the help of her resident and through my own research I've found a protocol that really works for me.  I'm lucky to have a medical background myself and specialize in hard to treat diseases in animals so I am used to researching less known treatments.  Anyway if it's helpful here's the complete list of what I've found helps me with links to some of the studies (I want to expand on this in the future because there is a lot of information out there!)

https://pathwithpaws.com/blog/2017/02/18/using-supplements-to-treat-young-onset-parkinsons-from-lrrk2-mutation/

Also completely agree with Stump on exercise - I considerate daily exercise as important as my meds!  I rotate tai chi and feldenkrais with dance and yoga and walk at least 30 minutes every day if not more.  I completely get it is harder with younger kids.  My son is 19 so I've moved more into a supportive role than one of care.

best wishes,

Lena

Nice link.  Thanks! When I have tried some drinks with Ginko, I get a little light headed; but I feel fine.  Any ideas what that means? (Sorry, maybe this should be a new topic). 

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Hi Murray,

Ginkgo can have effects on your blood pressure so it may be the issue that causes the dizziness.  I also find that any of my supplements that push blood to my brain - niacin especially because I take such a high dose, can make me slightly lightheaded for a short period of time.  

best wishes,

Lena

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Hi Murray,

Ginkgo can have effects on your blood pressure so it may be the issue that causes the dizziness.  I also find that any of my supplements that push blood to my brain - niacin especially because I take such a high dose, can make me slightly lightheaded for a short period of time.  

best wishes,

Lena

Thanks!

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it sounds like you know food/protein can reduce the affect of sinemet but i have to ask when do you eat dinner and on avg how much protein do you eat?   do you drink anything with amino acids before 7pm, even tea?   do  you take any supplements around that time?  energy drinks?  i assume you've tried eating nothing 1hr before the dose that covers you at 7pm and no food/supps 2 hrs after? 

 

you might want to play around with 50/200CR at times, maybe in  the evening.  it has much  less bioavailability than IR, 60-80% and might last 4 hrs and have an equivalent max of 120mg to 160mg compared to IR.  THE problem about CR is predictability, it takes an avg 90-120min to kick in and sometimes not at all since it dissolves so slowly.   neuros seem reluctant to prescribe it because of this unpredictability.   i like the mylan brand.

 

if food isn't a problem then you could time your dosages closer together.  make sure your're well hydrated and drink 6oz-8oz of water with sinemet.    adding tbsp of lemon juice might speed gastric emptying, the longer sinemet stays in your stomach, the more is converted to dopamine which can't pass the blood brain barrier.

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just curious benderet

you mentioned a roche generic, I don't think that is available in the U.S.   the make a pill for europe i think.   can you post what's on both sides of the pills you are taking?

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I drink tea constantly all day.  Ironically it's what I always take my sinemet with :-).  Yes I have tried not eating in evening with my 7pm dose - the problem I run into is really the fatigue.  If I take enough to be "on", I'm desperate to get in bed.  For example, last night I was relatively functional and took a little extra sinemet in the evening.  When the kids were in bed I was miserably exhausted and went to sleep immediately at 8:15 pm (usually get up at 630 am).  However, I woke up an hour later, when the drugs wore off, and couldn't sleep for 2 hours, and finally gave up and took a benzo to go to sleep. 

 

As for pill brand, I looked it up and I guess I was mistaken.  The pill has a "R" logo on it which I thought was for Roche, but I guess it may be some other manufacturer.  It has 539 on the other side of the pill.  The teva version says teva on one side and 93 \ 293 on the other. 

 

It seems like the consensus here is to give the CR a whirl and push myself for more exercise.  I'll try that and post my experience. 

 

Ed

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you  are taking the activas brand.   black or green tea has amino acids that might interfere with l-dopa, probably not enough to be significant but worth trying just drinking water with your sinemet.  it is unusual that you do fine all day, no fatigue? and then you come home and you feel tired.   one might speculate you aren't taking enough sinemet in the evening.  just curious, how long have you been taking the activa ® and when were you taking teva, did you have the same problem?    can you be more specific what you mean by tired?  sleepy, brain fog, nauseaus?  sinemet can cause low blood pressure, have you checked that? 

 

CR is different than RYTARY.  RYTARY is a combination of IR and a new CR formulation and could be very expensive  since it just came out and there are no generics.   CR has been around for at least 10 years, there are generics that your insurance will pay for like IR.

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I've been on the activas brand for ahout 6 of the past 9 months.  My first few batches were the teva, then I was switched to the activas, then briefly back to the teva as I describe above.  The problems on the teva were all worse including being tired. 

 

When I say tired in this context I mean sleepy.  I'm glad you asked because this raises a good point - I told my doctors for years that I was feeling "tired" until I finally figured out that no one knew what I was talking about.  Let me break fatigue down into four separate things (not an official classification just my own):

 

1.  "Motor Parkinson's tired" i.e. bradykinesia / stiffness

2.  sleepy

3.  mentally tired, i.e. difficulty focuising, ADD type symptoms

4.  emotionally tired, i.e. feeling stressed out, anxious, irratible, drained, depressed, etc.

 

For me the challenge is finding the balance between all these things.  Sinemet makes 1 better, 2 worse, and 3/4 unchanged.  Strattera (non stimulant ADD / antidepressant type drug) makes 3/4 better, 2 worse, and 1 unchanged.  Stimulants make 2 better but 4 so much worse that I can't take them.   From this it's clear that 1 and 2 will always be in conflict.

 

Circling back to my original post, I think part of the problem when I get home is that I am going from a medical environment (I work in a clinic) with big open hallways, to a small house with clutter and noise everywhere.  Accordingly, the amount of sinemet it takes to adequately control Parkinson's at work is less than what it takes at home.  When I get home I quickly get frustrated tripping over toys etc and have instinctually increased my sinemet at this time of day to compensate, which then makes me sleepy. 

 

As for the question about blood pressure, I checked it out of curiosity and it is indeed a little on the low side.  My BP is always on the higher side of normal but I checked it when I was feeling tired the other day and it was something like 103/62 if I remember correctly.

 

So with all that said, to get to the punch line for those who are still reading, I am pleased to report that the citicoline I've tried has really seemed to help.  In fact I feel like it helps with all of 1-4 above which is quite amazing.  Of course it could just be placebo, but frankly even if it is I don't care if it helps.  I also am picking up an Rx for CR sinemet today and will report back if that helps further.

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