hi seaangler ,i really dont know why you have to put up with generic drugs , my gp s tried it once ! and i only tried it once got my pd movement speclist nurse to write a letter & its never happen agaian as for the entacapone i have the branded ones they are entacapone teva they are really workingmy on time last night was 4pm to 10.45pm bedtime ! and thats what i call ON ON ! walking like a normal person & no dyskinesa.Just have trouble in morning coming on but right leg scuff ! thats better tho what i found i had to do to get most out of them is as follows morning 8 am 125mg half 250mg CR 10 amm 125mg sinemet 12pm 62.5 mg 2pm 125 mg CR 4 pm 62.5m 6 pm / 8pm 125 mg 10pm 250CR ...... but found i getting very dyskinetic 4pm to 9pm but on on ! thats why i dropped 6pm .so deciced to do away with 125CR at 2pm And this worked well started come ON ON !4pm to bedtime great ! now trying 125mg cr 8pm 125mg sinemet 10pm 125mg cr 12pm at mo iam ON ON ! BUT LITTLE DYSKINENTIC SO MAY MISS 2PM THEN 125MG 4PM SEE HOW IT GOES. WILL LET YOU ALL KNOW BUT AT MOMENT THINK I WILL GO BACK TO SETTLE FOR 4PM TO 10 PM LETS NOT BE GREDDY ! AS BIKE RIDING TAKES MY TIME UP IN THE MORNING OH MY LIFE IS SO MUCH BETTER THANK TO ENTACAPONE
Hi
I agree Golden girl and i discussed spreading it a bit more with my neuro instead of 3x4 why not 6 x 2, but my Neuro's stance is a big hit then coast too the next dose, I'm hopeful of hearing More on and the arrival of this Rytary in the UK for the Future, no doubt it wont be available until it has a generic version with the NHS.
I'm glad your getting some deeper sleep too, even with it being hot at night Supa, it is a god send too get that deep sleep, long may it continue.
Glad your getting good results from it Gus though it does sound complicated to get it right you have the confidence to do that. i will report back too the PD nurse in a month or two.
Some neuros are good, some not so...
You could try the little and often, keeping within the day's total and see how it goes for a few days....you don't need permission.
You have nothing to lose and if it's no improvement go back to the usual times.
The problem with waiting for a generic is that I understand that it is only allowed after the 10 year patent expires, but I may have got it wrong.
Good luck!
Love
GG
HI GG,
I was at the brain centre Bristol south mead hospital where they were the first to do dbs while under asleep and use a robot to insert probes into brain, any i was being seen by top dog and he suggested entacapone which was great ,so i said have you heard of drug rytary he said no ,so he asked nurse to get it up on computer and he was very interested & said he look more into this ! And hes doing gdnf at moment ! They have just finished filming about dbs with Celeb emma willis and its going to be on itv next year called THE MIRACLE
HI SEA ANGLER
JUST LIKE GG SAID HAVE A MESS AROUND WITH MEDS TILL YOU GET WHAT SUITS YOU ! EVERY DAY AT MOMENT TRY DIFFERENT TIMES & AMOUNTS YOUR THE ONLY PERSON THAT KNOWS WHEN YOUR ON THE MONEY !
Yep your both right,
i could do it too ring the changes,but me being me i could get easily confused i just laid my pills out so i could visualise how too make sense of it. sounds daft but that's how i am
i had too buy a day pill box because i had the problem "have i or have i not taken my pills??" and the only way i knew is if visually they wern't in the box. so i had my daily doses split into a 4 section pill box. as my times are 8am 12pm 4pm 8pm overnight is last thing as my head hits the pillow. i'll have too find a small 6 section tackle box.
We use a pill timer...you can get them from the Internet or Parkinson's shop.You set the timer..easy...press the hour button twice!...minute button in case you also need one...then when it rings, take your tablets and reset.
The pound shops often sell pill dispensers with 6 boxes but we need 8!
Gus, I am mystified why neuros at consultant level don't know about the success of Rytary in the States!
We told our neuro and she started taking notes.
Fortunately I had taken her a sheet printed out from the internet.
She was very excited and said she would have some info at our next meeting.
Dealing with Parkinson's is hard but educating the professionals is an extra burden!
Love
GG
gg ,WHAT CAN I SAY ! 