Parkinson's Disease Tulip


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Old 06-30-2015, 08:23 AM #1
dbarrett dbarrett is offline
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Default Has anyone switched from stalevo back to sinemet?

I'm a newbie but am glad to have found this site. My husband was diagnosed with PD in 2006 and has done well until the past year. He has been on stalevo for a couple of years but recently is having digestive issues and terrible freezing episodes coupled with an inability to move. We're wondering if perhaps he needs to go back to just sinemet. Any advice would be welcomed.
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Old 06-30-2015, 09:58 AM #2
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i've never tried stalevo, just generic sinemet so won't offer an opinion plus i'm not a doctor. it would be helpful to give drug doseages and dispensing times, other drugs your husband is taking, other medical conditions, other pd drugs your husband has tried and of course what does your doctor say?


in my case, i very quickly went from no wearing off to wearing off in sometimes less than 2 hours and had to increase my C/L (generic sinemet) from 600 to 800 and now up to 1000mg/day and am trying out regular generic requip to extend on time, yuk. so it sounds like your husband's sinemet "honeymoon" ended? happens to most pd'ers where you get to the point with sinemet where aren't making very much dopamine in your brain, you can't store dopamine in your brain anymore and you depend on every sinemet pill and with it's short half life you can go "off" like someone flipped a switch.

did this change happen suddenly, going from never freezing to a lot of freezing? might be a gastric emptying problem.

you might want to get a used copy of "THE PARKINSON'S DISEASE TREATMENT BOOK" by ahlskog, goes into great detail about how pd progresses symptom wise and how to treat it, what drugs, drug combos and doseages to start with and what's the "normal" doses as you progress. good book to refer to before seeing a neuro.
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Old 06-30-2015, 12:41 PM #3
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thank you very much. He takes stalevo 31.25-125 (200 mg) 4 x a day plus a carbidopa/levo extended release 50/200 at bedtime. Formerly he was on sinemet 4 x a day. His freezing episodes and inability to move/walk well began a couple/months ago. We have discussed this with his physician, but he made no changes when he was last seen. He also takes amantadine 100 mg 2x a day. He has had digestive issues for some time and uses a stool softener which helps tremendously as well as Miralax on an as-needed basis. His general practitioner prescribed nexium for his indigestion and it helps somewhat. We are wondering if the stalevo has simply become ineffective and we were curious if others had perhaps had the same experience. His muscles are very tight and his body is rigid. Movement is extremely difficult.
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Old 06-30-2015, 03:13 PM #4
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i've read adding ENTACAPONE to carbidopa/levodopa (which = stalevo) may extend the interval between doses by 30-60 minutes so it doesn't have a major affect. it allows more l-dopa to get into the brain and last longer after it gets inside. amantadine can help movement and reduce dyskinesia's, involuntary movement. i know some people taking more stalevo than your husband, amantadine and an agonist so he doesn't seem to be taking a lot of meds but i'm not a doctor. so if your husband isn't experiencing major side affects from his meds like hallucinations, low/hi blood pressure, etc., i'd talk to his doc asap to evaluate his meds and try to get him not freezing and better treat his symptoms. with exercise being so important in general health and making one's pd symptoms possibly less severe, i feel you take the meds you need to keep exercising and have a social life.


switching back to sinemet is up to you and your doc, can't comment on that.
that said, it can take awhile to adjust meds and even add an agonist which means you want to find the best neuro/movement disorder specialist you can find. good luck.

Last edited by soccertese; 06-30-2015 at 03:30 PM.
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Old 06-30-2015, 04:53 PM #5
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Quote:
i've read adding ENTACAPONE to carbidopa/levodopa (which = stalevo) may extend the interval between doses by 30-60 minutes so it doesn't have a major affect.
I was taking 2 25/100 Sinemet every six hours, but was wearing off after four hours. So we added entcapone to the mix (200mg tablet) with the Sinemet and it had gotten me back to being good for six hours. 4am 10am 4pm 10pm (usually in bed at 10pm; alas awake a little after 1am). I need that 10pm does least the dystonia monster visits me.

Sadly my body keeps changing, and I seem to be getting 5 hours "on". I just don't want to increase the medication, but try to manage through the day as best as possible (when off on a bad day, near impossible to use a keyboard or mouse... so I use voice recognition on the computer)
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Old 07-01-2015, 01:30 AM #6
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Quote:
Originally Posted by dbarrett View Post
thank you very much. He takes stalevo 31.25-125 (200 mg) 4 x a day plus a carbidopa/levo extended release 50/200 at bedtime. Formerly he was on sinemet 4 x a day. His freezing episodes and inability to move/walk well began a couple/months ago. We have discussed this with his physician, but he made no changes when he was last seen. He also takes amantadine 100 mg 2x a day. He has had digestive issues for some time and uses a stool softener which helps tremendously as well as Miralax on an as-needed basis. His general practitioner prescribed nexium for his indigestion and it helps somewhat. We are wondering if the stalevo has simply become ineffective and we were curious if others had perhaps had the same experience. His muscles are very tight and his body is rigid. Movement is extremely difficult.
He's taking the same anti P.D. drugs and mostly the same dosages as me.
Sorry can't help with digestive problem but as far as Parkinsons drugs go perhaps he could try taking another 200mg CR Sinemet during the night?
If he's off then its a long time before his next dose in morning of Stalevo.
Also something my MDS recommended which has made a big difference for me anyway is when I started on Stalevo which most of the time works (but sometimes doesn't) is when I find myself between doses in an 'off' state I take 1/2 a regular 100mg Sinemet and it tides me over.
On average I take that extra half a Sinemet once or twice a day.
I automatically take the extra half a plain Sinemet if I've had a good nights sleep too and gone for example 8-9 hrs with no extra Sinemet CR to get me up and moving of a morning faster.
Also be sure to take the drugs on time!
Best wishes.
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Old 07-01-2015, 05:34 AM #7
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Thank you all for your responses. My next plan is to call for another neuro appointment. He is not scheduled again until September but his inability to move has become rather profound. Additionally, he has problems sleeping through the night (he wakes up ever hour or so and has a lot of difficulty going back to sleep). Consequently he finds himself sleepy all day and often falls asleep several times a day. He feels week, tight and rigid most of the time. Your input is extremely valuable and much appreciated.
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Old 07-01-2015, 07:17 AM #8
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On sleeping: Google Davis Phinney Sleep

It should point to Davis Phinney's web site (excellent resource) and a sleeping lecture by Dr Gary Leo.

I suspect a lot of my issue is lack of sleep as it seems I get 3 hours, then awake. Adding a 10pm (bedtime) dose of Sinemet & Comtan helped in being comfortable, but the brain still just wakes up. Usually watching the 6 O'clock news, common to fall asleep.

When my gut slows down, I need a longer "no protein" window for my Sinemet. Typically I am a 'fast to metabolize' as I take Sinemet and feel better in 15 minutes. When my colon backs up with no movement, it seems like my Sinemet isn't as affective. Walking helps, but colace and senekot are both in the daily routine to help keep things moving, as is a morning cup of coffee (zero caffeine after 12pm, least disturb my sleep).
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Old 07-01-2015, 08:12 AM #9
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i would call and ask the neuro for a 25/100 sinemet rx right now, with directions like "take one tablet by mouth up to 3 times a day" so your husband can have some extra sinemet to try before the visit, this seems like an emergency to me. you can refill it as needed if there is an insurance/cost issue. and maybe increase the qty on the CR rx. you can split the 50/200CR tablets and take 1/2 tablet or 1.5 tablets, i've found taking 2 too much for me and sometimes it kicks in much later than expected and i've taken a 25/100 thinking the 50/200 isn't going to work and then it kicks in, get quite nauseaus.

constipation definately decreases the affect of sinemet and you need to drink a large glass of water with each dose.
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