Hi there thought I would just jump on board the discussion
I have had PD for nearly 8 years I am on 1 rasagalinein the morning and then 5 entacappone 5 times a day plus 1 and 1 half doze of sininet 5btimrs a day like gus I feel myself bouncing of the walls and falling daily. This is the first time I have heard anyone on here saying that and when I read it I? Said to myself that is just me.
Babs x x x
Hello Babs
Nice to hear from you maybe you could give stavelo ago, I’m fine one minute and think shall I take my next lot of meds as I can feel my self coming Off ,then I’m zig zag every where at least I can turn my dbs down so I’m not weird so much but then I start shaking can’t win.Lets get some more info anyone GG used to say little and often!
I always got told it wasn’t in the family sorry can’t spell the word I’m looking for. Well that’s s…t for your family so sorry
I was diagnosed with PD just after my 60th birthday and this year I will be 70 and have been through a variety of drugs. For the last few years I was taking 1 sinemet plus(25/100) ,1 Sinemet (12.5/50) and 1 Entacapone 7 times a day, which was subsequently changed to Stalevo 150 That reduced the tablets in the day from 21 to 7. A vast improvement in administration but over time no real benefit , as still suffer from dyskinesia and stiffness. In addition I take 4 Pramipexole and 1 half sinemet controlled release just before going to bed.
After the consultant and Parkinson’s nurse have been nagging me for about 2 years to go on the Apomorphine pump I have just started on the process of using the pump , gradually increasing the dose of and trying to reduce the stalevo. I’ve only been on the Apo pump for 2-3 weeks and have reduced the stalevo to 6 a day. The next part of the plan is together rid of the Entacapone element by replacing the stalevo gradually by introducing the sinemet again and increasing the Apomorphine.
We were resisting the Apo pump because my wife is scared of needles, but there is now available a Neria guard which doesn’t use needles to get
the medication infused, but uses a plastic tube. This is brilliant and doesn’t cause any pain when inserting. It just has a very strong glue which can be difficult to remove but my wife is coping very well with it. Only time will tell if this strategy smooths out the peaks and troughs during the day, but I guess like everything it will eventually stop working, giving rise to yet another strategic changes
By the way we have now found what I consider to be the best source of advice from a medical person .This is the Parkinson’s specialist nurse employed by the supplier of the Apomorphine and Neria guards which come from Britannia pharmaceuticals. She has over 15 years with the NHS Parkinson’s, but now works for Britannia.
Very interesting don’t think I could manage to write a long message as you,my apologies so in your mind do you think it’s worth swapping from sinemet & entacphone for stavelo,i keep thinking is this the right course as I still have a ON period 8hrs out of 12 hrs. I take 1 x Azilect 1 x 125mg 1 x entacphone 8am. 10am 1 x 62.5mg sinemet. 11am 62.5mg x 1. 12.30pm 1 x 125mg sinemet 1 x entacphone. 3 to 4pm 1 x 125mg sinemet 1 x entacphone. 5.30pm 62.5mg 8pm 1 x125mg sinemet and entacphone 10pm 1 x 250cr slow release sinemet .PLUS my Deep Brain stimulation .I’m only 48 and had pd for 12 yrs.Im just waiting to hear back from my Parkinson’s movement specialist nurse Bristol hospital Dbs .They might have different ideas about stavelo. Thinking about just trying anti dyskinesia drug’s. There are some new meds final trials dyskinesia ! Who knows how long there take to come out.Its so tricky which way to turn, Also thinking new Boston scientific dbs seems to be leading the way. As Medtronic system only has 4 contacts each wire while 8 contacts Boston scientific targeting the area in the brain. It’s a mine field any other answers.
Albert well not to bad when you going but now my hands feeling s…t all the best
Hi. Have you talked to your pd nurse. I was lead to believe dbs would reduce your tablet in take. Are you sure you dont it adjusting or replacing. Technology changes after 8 years.
I would go and speak to someone then take more tablets as to me with the dbs and more tablets you may be causing the dyskinesia.
Hi Scouty
I have been adjusting my settings myself up & down on my dbs , ie not the main settings also I have been adjusting my tablets and I seem to be very close to getting them right amount again, i have halfed my first entacphone 8am also I’ve dropped my 11am 62.5mg sinemet which as made an improvement. So I’ve just got afternoon meds too sort I will get there, the whole reason why I mentioned stavelo is this drug reduces your meds as well instead of taken entacphone & Sinemet Stavelo has both entacphone & sinemet in this one tablet so I would be reducing my tablet.As for my settings on my dbs I’m very sensitive to change and it’s getting very hard to find right settings, i can reassure you this is not the first time this as happened and I know there is more technology out there Boston scientific dbs has 8 contacts on each wire and is more direct to the brain ,but can’t see them changing me over to this at moment they reckon dbs works 12 to 15 yrs ,Mine is coming up to 9 yrs March 2020 .The operation might not be as bad as first because I’ve already got tubes in for wires but we would be talking about another £50,000 so I don’t think this would be an option yet , if don’t succeed in getting my settings and meds right then yes I will have a talk to my dbs movement specialist nurse. I think I’m not going to bother with stavelo but may introduce a anti dyskinesia drug’s.Thanks for your input tho ,have you got dbs fitted Scouty, Also my pd was really aggressive from the start .
Hi Gus, Ive been on Stalevo for 2/3 years and had DBS back in January this year. Still have shaky times but generally under control. What I will say is that they are not that easy to swallow ( although this may just be me having swallowing difficulties) and I think you have to keep your fluid levels high as they may increase likelihood of constipation.
Good luck to you, V
Hi Vaughan
Was you ever on sinemet and entacphone. Or have you been stavelo all the time ,still trying to make my mind up! .As stavelo would lower my tablet intake also I have heard they can also drop the carbidopa and levodopa. Think I’m going to try anti dyskinesia drug first see what happens. Many thanks for your input.
I take sinemet plus 25 mg 2 tabs three times a day plus one pramipexole daily and 2 slow release cocareldopa at nighgt. The sinemet do not work as well as they used to i.e.not so much on time and my neurologist said we should think about adding stalevo. Any advice ?
I think I’m going to give stavelo a bash see how I get on will keep you all informed. Arzan
Hey Gus , I was switched onto Stalevo from Madopar + Entacapone and it was a disaster.
I’d never had dyskinesia before but boy did it kick in. I lasted a month before I told them I wanted switched back to Madopar . I take Amantadine to counter the dyskinesia but was taking that long before Stalevo. I feel like I’m at the best I’ve been for quite a while. Don’t believe them when they say Stalevo = Madopar + Entacapone, it’s not. MADOPAR also has something called benserizide in it .
I’m also on Requip XL (ropinerole) but it doesn’t affect it , apparently. If it makes you Ill make them swap you back , don’t sit back and take it …its supposed to make you feel better!
Hi gus like you I decided to try stalevo and if it was not making any difference then I was told I could go back to sinemet plus only problem is when I wore monitor for week it showed I was at my worst as one sinemet was running low and the next one was kicking in so will give it another 3 weeks and see where I, m at just remember no 2 people react the same to any drug one man, s meat is another man, s poisen please keep me posted and I will do likewise
Pete
Dwl2412
Will do thanks for the heads up what strengths do the stavelo come in or is there just one which replaces 125mg sinemet & 200mg entacphone. Also did the anti dyskinesia drug’s do anything my dyskinesia is not to bad as I have my dbs, it’s just when I go over the top and start walking all over place and wired cheers let you know how I get on.
Hi Gus , like lots of us I have tried many differentt tablets including sinemet. They even tried me on sinemet in the early morning, as I wake at about 2am shaking and sinemet doesn’t quite do the job
. So I take 5 stalevo in a 24 hr period as well as having DBS in January this year. The consultant tried to get me to drop the 2am stalevo after DBS and I tried but was only getting half a night sleep and felt like a zombie for the morning. I know this gives less room for additional tablets.
Hope that helps. v
I have been on Zopiclone for about 9yrs out of my 12yrs dx ,where did you have dbs done and what system have you got Medtronic or Boston, i had my dbs 8yrs in March I have the Medtronic system as the Boston scientific was not out then ,starting to hear really good feedback on Boston as it has 8 contacts on each wire, was going to have Boston fitted when my battery was going to end ,but thought stick with the devil you know and it would have been just the dbs not the wires, i have 15yr rechargeable. Took me ages to get my settings and meds right 18 months as I wanted to get 100% out of it.Never ending this parky
Hi interested to see how you go on with the apomorphine my husband has been on it 10 weeks now he was on 16 mg of Ropinerole which he has stopped now. He is also on Amantadine and Stalevo I think he is 25% worse now then when he started on the pump, He was diagnosed about 22 years ago. Like your wife i find it hard to put in the needles,
Wow that is such a long time, but saying that I’ve had pd for 12yrs and my wife is my rock ,my heart goes out to you.
Well tried Stavelo for 4 days and I was all over the place, i suppose my body use to entacphone & sinemet as I’ve been on this for maybe 4yrs. So I’ve started Amantadine 100mg 1 a day for one week then second week 2 a day, this will be my 3rd day and dyskinesia feeling better already don’t know if it’s because I’ve stopped the stavelo but I’m a lot happier. Will keep you posted
