Advice needed please on "wearing off"

Couldn't agree more, Benji.

The little and often approach works for many patients...keeping the level almost constant.

Every 2 hours is a nuisance but the benefits outway the disadvantages.

My OH arrived at 8 doses of Sinemet a day with the odd rescue dispersible Madopar by trial and error and I think it is willingness to experiment in a planned way that is likely to reach a personal , effective regime .

I think Neuros who prescribe the drug, its dosage and timing and send the patient away, to report back in 6 months are not recognising the individuality of the patient or the contribution they can make to devising the best programme for themselves.

GG

never a true word gg . i also say your the only person who knows what your body is feeling ! merry christmas gg

Hi Kate and GG

I read your posts the other day about spreading the Sinemet doses through the day and it reminded me about a conversation about this with my consultant.

Over the weekend I've experimented with taking 1 tab every 2hrs instead of 2 every 4hrs and I definitely think it's an improvement.

I haven't been having such long periods off and have felt much more "normal". It could be a placebo effect but I definitely feel better. Thank you both for the reminder.

Regards mrtoad

Just typed a long post but....gone!

In a nutshell. Pleased you feel better , hoping Rytary will be partly a solution, same effect in fewer doses, until then ..little and often it is!

Love

GG

hi mrtoad

                     im being nosey you say used two take 2 tablets every 4 hrs was that sinemet  2- 65.5 mg or 2-125mg

Hi Gus

I take 8 125mg Sinemet each day along with 1 rasagiline, 2 amantadine and 14mg rotigotine patches. I also take a sinemet CR at night plus a half sinemet CR in the middle of the night. On top of this I can take a second half Sinemet CR during the day if feel the need and have a supply of dispersible Madopar as a rescue remedy.

Despite all of this I have been having long "off" periods but as I posted earlier, spreading the dose over the weekend does seem to have helped. 

thats alot of sinemet i have been told by my dbs nurse some  people are on a high dose ! i now take 4 125mg sinemet & 3 62.5mg also 6 entacapone 1 azilect & 1 250 sinemet cr .  Do you not suffer with dyskinesa at all .i was not able to tolerate to high meds thats why i had dbs have you ever consired it. or entacapone to get better on ! time

Hi Gus

I do get dyskinesia, especially when I'm trying to do something fiddly, like eating! I tried entacapone but it made the dyskinesia ten times worse. I am waiting for DBS but haven't started the initial tests yet, hopefully I'll hear something in the New Year.

 

 

all the best mtoad ,i have been on entacapone for 4 months & it has made a big difference yes my dyskinesia got worse but all i did is drop the sinemet down a bit ! happy christmas hope you get dbs soon.

Thanks Gus.

Best wishes and merry Christmas to you too.