Severe off-time


#1

Have had tremor intensive Parkinson’s since 2001, 76 yo, live alone. Diagnosed by three different Neuro’s (two of them movement specialists) Tremor, stiffness, etc, effects mainly right side. I also have ET, not bad though. Started Sinemet Feb 2012, 3 x 100mg/d, 5 hr apart, increased to 150mg in Nov 2012. Worked fine until Mar 2013. then it would work for an hour or two then turn off and many times not kick-in at all. I had never before experienced off-time so thought I had developed an allergy to the med. The sad part is if my first dose at 8am does not kick-in then my day is pretty well shot. My off-time is dramatic. It comes on within one to two hours with a sudden increase in severe tremor, slowness of movement, difficulty sitting and standing, shuffling gait and no energy for daily tasks. The strange thing is that I feel OK in the mornings with only slight tremor and movements OK. I am aware that if I don’t take the Sinemet I will become weaker so I prolong it until 2 pm then suffer through the afternoon 3 x 100mg 3 hr apart. I am wondering if any of the experts on this forum have had a similar experience and are able to offer some advice as my Neuro apt is several months down the road. Neupro/Rotigitone patch is now available in Canada, would that help? Any other advice appreciated! Thank You.


#2

Canuk

not exactly the same but i recognize alot of what you write.  Have i read correctly that you have only been on sinemet since Feb last year but diagnosed 2001?

 I take madopar 5x150 .  It takes 40 mins to work and lasts maybe 90mins so lot of off time.  I also get worse symptoms particularly tremor after each dose which takes time to settle.  I have just introduced entacopone hopefully it will increase on time.   Like you i have only had off symptoms this year but been on meds 4 years.   Canuk how many Sinemet tabs do you now know take in 24 hours?


#3

My husband had to come off DAs after 10 years and change to Sinemet.

Initially he found it worked for about 2hours and then was immobile for about 2 hours until his next dose.

His wonderful neuro told him to take the doses half an hour earlier for 1 week and then decrease time between by a quarter of an hour per week until he was on continually.

This meant he took the tablets every 2 hours.

After working out the right time gap he then had to reduce the dose in each tablet by a very small amount until it became less effective.

Then he was on the right dose with the right gap in between. This trial and error approach takes time but does tailor the dosage to the individual.

Eventually he was prescribed dispersible Madopar in addition to the usual Sinemet to get him going in the morning and before and after his evening meal to overcome the protein problem. He can take one as a rescue also if he gets stuck.

Fortunately this regime has worked well for the past year.Hope this helps although it seems complicated!

Good luck!

GG


#4

Thanks GG helpful information.


#5

Hikoi - I just started experimenting yesterday. As i mentioned earlier my mornings are still OK - better than off-time. So I stated at noon 2 100 Sinemet (same as Prolopa) then 1 100 every hour until 8 pm. Had a real good day, no off-time. This may be too much for me so today I will increase the time between doses to 1.5 hr. It's all about experimenting till you find the right dose, no doc can predict that. I prefer to stay with the Sinemet for as long as possible without adding additional meds to cope with side effects. Good luck with the Comt.


#6

Hi GG: I have a few question for you as we in Canada do not have the wide array of meds as you...

What are DA's?

How do you reduce the dose of tablet in small amounts other than breaking it in half for 50 mg?

What is dispersible Madopar? Does your Madopar not come in capsules only 50, 100, 250?


#7

Hi Canuk

Dopamine agonists are meds such as Requip,Pramipexole, Ropinirole ets and often lead to severe obsessive/compulsive disorders.It tells you on the tablet leaflet if yours is a DA.

My husband bought a pill cutter from the pharmacists to cut pills and is now on12.5/50 1 and a half tablets x 8  co-careldopa.

The dispersible Madopar is co-beneldopa dispersible12.5/50 and he takes 1 on waking and 1 before and after his main meal as well as his usual Sinemet. He can take 1 anytime in an emergency such as freezing when leaving the cinema.

They work in about 5 to 10 mins if swallowed with a drink.

I hope this info helps.

We cannot believe how much this tailored approach has improved his mobility.

Good luck!

Love

GG


#8

Sorry..missed out that when at home he dissolves the Madopar dispersible in a small glass of water and keeps a small bottle if water in his pocket for emergencies when out.

x


#9

Hi canuk

I don't visit here daily but I'd be interested to hear how it goes for you over the next little while so I hope you will post again.

I have added the entacopone to sinemet at first dose and third dose. I still take meds 3hourly but my wearing off is less marked and the meds seem to kick in quicker. So it is having a positive effect overall.  

I have taken a long time to accept the need for entacopone so I'm curious about how people decide to use it.  Can you say more as to why you wouldnt add it at this stage and prefer to increase sinemet.  I dont think of  it as a treatment for side effects (unless you are meaning wearing off as a side effect).  


#10

I preferred to increase Sinemet instead of adding Entacapone mainly  to keep my medication simple and avoid another lot of side effects from the Entacapone. i found he amount of Entacapone you have to take relatively high , you cannot take less than 200mg every time. Maybe my reluctance to start on this is psychological.


#11

I understood that Stalevo was Sinemet with added Entacapone, formulated to make the Sinemet last longer.

My husband tried it but felt very ill, as if he had flu. The Parkinson's Nurse said that was a fairly common reaction, unfortunately.

He was fine as soon as he went back to Sinemet only.

Worth a try though if you want to prolong the action of Levadopa.

GG


#12

Hikoi - finally back. Am now taking 150 mg sinimet plus 200 mg comtan starting a 1.30 pm, sometimes add 50 mg one hour after if I feel it has not fully kicked in, then another dose same at 4 pm, last dose without comtan at 7 pm. Seems to be doing the trick for now. How are you making out. 


#13
Well that's a novel regime Canuk, so not medicated until the afternoon.
 
i increased the entacopone but i didnt like it at all so I stopped it.  I have increased my first madopar dose to 125 plus 62.5 caps then following doses are 125mg every three hours.  However still not well enough controlled.  My symptoms, tremor and weakness seem to be brought on by the meds each dose so rather than wearing off they are wearing on symptoms.  Not sure what to do next but may try GGs ideas. Problem is im not in such a routine as to keep so exactly to timing.
 
Good to have the update Canuk.

#14

is any one taking amantadine as i am intrested ,as i have dbs and  the only one thing now is my walking & balance ,heard this can help !how does it interect with other meds  !