I’ve been taken sinemet & entacphone for 8yrs .I have been dx 12 yrs have had dbs 8yrs starting to get dyskinetic again on and off times unpredictable. I’ve been asked if I will take stavelo as this would reduce my tablets ie sinemet plus entacphone has anyone got views on this .
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Hi gus I have been taking stavelo for 2weeks as my sinemet plus were not working as they used to at moment feel lousy but its early days would be interested to know how you get on with them if you decide to take them I can keep you posted as to I get on if it is any good to you
Pete
That would be great what dose of sinemet and entacphone were you on.im on 1 x Azilect,.125mg & entacphone every 4hr a day also take 62.5mg every 2hrs bedtime 250cr this is with dbs as well .Are you getting any on time at all .My on periods are this is walking 11am till 3pm maybe 4pm but from 1pm very off balance and walking bouncing off walls as such then takes about 8 pm to 9 pm to come on for about hr or two .Have you not put dosage of stavelo up yet. As I thought the change over period was stop talking sinemet & entacphone one day and go on stavelo next increasing amount to suit is this not the case, as I think I’d hate to lose all my on time and start taking anti dyskinesia drug’s first wow this is starting to worrie me a bit na in for a penny out for a pound can you not increase meds your self
As it’s only 8 40am at moment I don’t shake had 1 x125mg sinemet 1 x200mg entacphone and 1 x Azilect this was at 8am but just takes me another 10am 62.5mg sinemet 11am 62.5mg sinemet to get my legs working then ok.Then another 1 x125mg sinemet and entacphone to stay on ! Then about 3pm become a bit all over place even if I turn dbs done to where I’m still not shaking then if I don’t take 4pm meds as I feel over the top ,i won’t come back on I So catch 25
By the way stopped taking 2pm 62.5mg not needed no more but do take 62.5mg 5.30pm helps me switch on still stop talking this gel like crap
Do you have deep brain stimulation as well ! Maybe need some adjustments very hard tho think I’m at my best settings, maybe have old Medtronic system removal and get Boston scientific 8 contacts each wire only 4 Medtronic. Boston scientific dbs seems to have moved on faster than Medtronic
Is there any other people welcome to get into this comment
Think we need some more inputs jump on in this is what this forum about in the old days we’d have about 5 to 6 people involved in this topic now where as everyone gone
Peter can I ask if you was on sinemet & entacphone. Then trying too do the same as I am swap over or is this your first drug .many thanks for input keep it coming
What I mean is was you on entacphone as well sorry
I was diagnosed 18 months ago. I have not heard of entacphone, what is that particularly for? I started on 4 sinemet a day, every 4 hours. For a month I have been taking rotigotina patches which do not seem to be having any effect.
Are the different drugs for particular symptoms?
Hi never entacphone I was on 4 sinemet plus 1 pramipexole Sr in morning and half sinemet cr at night for 5 yrs all he changed was stalevo for sinemet plus
Pete
Entacphone is a add on on drug taken with sinemet too try and make the sinemet give you more on time. But what they say is stavelo as both of these drugs in one tablet so this will try and reduce the amount of meds your on.But does it work this is the question. Also apparently you just swap over no weaning off entacphone which makes sense only thing is to find the right amount and not get dyskinetic on these ie looking for a smother On time.
So what dose have you gone up to on stavelo and are your On times better and no dyskinesia! Have you got a free rein on how many mg you are taken. At first if I try I be on Azilect x 1 8am change my 125mg sinemet & entacphone for stavelo then 10am 62.5mg x1 .12pm change so on too see what happens then bedtime 250 cr sinemet slow release x1
Well were up to three people now come there’s got to be more people on this subject like the good old days used to be 10 to 15 people helping or advising where are you all.
Hi I, m on lowest dose of stalevo and still on 62.5 pramipexole and 2.5half sinemet hard to say what difference there is as sinemet were not working as they should have been for a while so my balance and muscle stiffness were worse so I, m hoping it will improve time will tell side effect so far I pee pure orange juice think I might bottle it like del boy, s Peckham spring water!!! Poo slightly orange so far not noticed it in my sweat but if I get tang, od will let you know
Pete
Yeah that will be the entacphone tango man bit.Have not given you a free hand in putting meds up or have you got to phone nurse to get higher dose sinemet seems to be very low are you benefiting from them yet.
Forgot to ask how long have you been dx now, got my pd at 36 yrs had it for 12yr now mine was really aggressive that’s why I got dbs aswell
Should just read your profile sorry
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Hi Gus been diagnosed for 5yrs and 9th member of my family with pd sadly only one alive nw dad and his brother passed on 18 months ago within 6 weeks of each other though my cousin is now showing signs of pd I will be increasing dose of stalevo on next 2 visits to clinic the other 2 are slow release
Pete
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