On & off times


#1
taking 2 * 250mg cr sinemet. 4 * 125mg sinemet.2 * 62.5 mg .dbs controls hands arms .but legs starting to shuffle in side house confined spaces only good for couple hrs any comments

#2

Every neuro has their own preferred pattern of meds and every PWP is different so it's hard to know what is "best", Gus!

Our neuro, who rescued my husband from the DA nightmare and got him on to a very successful Sinemet regime told us that little and often is the best approach and the aim is to keep the Levadopa as constant as possible.

The Sinemet doses are every 2 hours and he takes 8 a day.(one and a half 62.5)

The morning Azilect is to slow the progress and Madopar dispersible is to be used as a rescue if eating out or needing a boost to get going in a crowd, eg cinema.( Max 3 a day)

The neuro thinks the slow release Sinemet now available in America but not UK will be a very useful med to extend the life of each dose.

Neither he nor our Parkinson's nurse think the current cr version is very effective and my husband did try it at night but found it didn't really work for him.

Stalevo is another option as the Entacapone extends the time it stays in the system but my husband had very bad side effects....a common reaction to the Entacapone evidently and couldn't take it.

I wonder why your doses and types of Sinemet vary, as this seems to be at odds with keeping the levels steady?

I think the future holds out the imminent arrival of better delivery...the patch in clinical trials and the long-awaited Rytary.

Keep asking questions and experiment if you are allowed!

Don't give up!

Love

GG

 


#3

hi gg new i could rely on you !  you say your husbands on 8 aday is this right  8- 125mg / 8 = 62.5mg total 1200mg  . at what times does he take these  one and half being 125mg + 62.5mg .  my gp said 900mg is the limit but thats a gp not pd speclist


#4

Hi Gus

My maths isn't too good but the 8 doses of 1 x62.5 and a half 62.5 adds up to just under 800 per day.( about 93 each time)

Then there's up to 3 of the Madopar dispersible...always 1 with the first dose on a morning then as needed and the other 2 not always used .

He doesn't stick to times...he starts when he wakes up and has a pill timer to remind him to take them every 2 hours until he goes to bed.

When he first got going on the Sinemet the neuro told him to take them closer and closer together until he had no off periods....then start reducing the dose until he started experiencing the symptoms  creeping back in.

This took about a month of slowly shortening the time and then lowering the dose.

This is how he ended up on the present regime which has worked well for over 3 years.

The Madopar dispersible was suggested by the nurse after we had a few difficult times after eating out when he ate protein and we couldn't get him mobile enough to get back to the car!

Also waking and getting going in the morning were a drag and the extra Madopar helps enormously.

Our neuro is great and a believer in experimenting until you work out what works for you.

The newer systems to deliver Levadopa and keep a more constant level will hopefully change our lives....not a cure but a leap forward!

Keep trying and trust yourself to know your own body and responses.

Love

GG

 

 


#5

 

Hi Gus n' GG

I had an appointment the other day with my neuro we discussed doses & times, his strategy seems too be a big hit and then coast too the next, he wanted too up my dose of madopar too 4 x 4 62.5  4 times a day which would be 250mg a dose or 1000 mg in total @ 8am,12pm, 4pm ,8 pm .

I wasn't too keen on this,upping my dose to 1000 mg, I want too keep something in reserve it is a marathon not a sprint as they say, adding on 250 mg seemed to be just for the sake of it, I didn't see that i'd get a benefit when taking the dose and then another 4 hr's later, it lasts 2 -2.5 hr's max, another 250mg wouldn't fill the off gap.

He did give me the option of a overnight madopar CR, so i have started that too ring the changes and give me some benefit in the mornings when i am off, eventually i will start entacapone and when that happens i hope too lower the dose of madopar too bridge the gap with the 'boost' of  entacapone. if i tolerate it.

I hope that makes some sense?.


#6

thanks gg quick reply thats strange as when i  used to split 62.5mg my pd nurse always said that ,that amount would not do anything .i always thought they measure  meds as follow 100/25  is 100mg .12.5/50  is 50mg  which one & half would be  75mg.all so confusing ,im on 125mg every 2 hrs not doing a lot get about 1hr good walking ! thanks sea angler


#7
spoke to my pd nurse and going to introduce 62.5mg madopar in morning for a boost also between my off period in afternoon 62.5mg madopar and because I'm such high dosage a visit to my local neurologist fingers crossed .thanks for a great replys hope to help both of you if needed