It seems i only have too put the title of the thread in and it Posts straight away before i have had time too actually type something these days...
Anyway, Just now after a visit too my Gp for a review on some of my Pills(codeine & amitriptyline), it seems it has already been decided when i see the Neuro on the 1st of July that i will be put on Entacapone too run along side with the Madopar i also take. or at least i think that is the gist of what the Gp was trying too say?.
He says it is too prolong the results of the Madopar and that i should be doing better than I am.
Too be honest I don't know what they are expecting from it lots of people seem too take far far more pills than i take and yet they still have problems and symptoms from PD and i told him just that,i am learning Pd is more than just a list of symptoms.
I realise after looking stavelo(which i haven't taken) is basically sinemet plus entacapone or there abouts.
So does anyone take or taken this too run along side Madopar?
Is there any benefits from it?
if so what are they?
did the expectations of the Neuro match the reality?.
Thanks in advance.
Hi. I was disappointed that you had no responses to your post, as I was hoping to get some useful info. Sorry that I can't help with personal experience.
I currently take 5 x 100/25gm Madopar tablets per day, at between 3 & 4 hour intervals, usually 8 am, 11.15am, 2.30/3pm, 6.30pm & 10pm and another 50/12.5 tablet at about 4 am when I wake up with really stiff neck and can't relax it. Usually in about 30 mins it eases and with luck I can get back to sleep. My consultant has told me that if I find I need to take these even more frequently he would add Entacapone which would increase the duration of benefit of the Madopar. I think he said it only adds about half an hour. Alternatively, Stavelo contains it in one tablet (= Sinemet and Entacapone). If I do want to go this route think he would prescribe Sinemet instead of Madopar for a while first, to establish/check a beneficial dose, before going onto Stavelo.
All in the future, distant, with luck! My main problem is gait initiation and poor balance, which are always pretty bad regardless of taking meds. I do seem to have had to increase to my current dose level rather more quickly than I expected - started Madopar about 14 months ago, when 3 x 50/12.5gm tablets daily seem to do the trick. I now find I get a really stiff uncomfortable neck when need next dose! Consultant thinks I use dopamine up v fast as I have, or try to have, a very active life-style - amongst other things, I'm a keen cyclist, but can only do about half the distance that I used to, and am useless the following day!
Hope that all makes sense. Best of luck with next appointment.
Thanks and yes that does make sense
I take madopar 4 times a day 3 of 62.5 , i don't suffer with a stiff neck but my legs down too my feet & toes are stiff in the morning when i awake, I also find if i over do things being stubborn trying too stay active as i once was that i am useless the following day and perhaps i am slowly looseing stamina & that bit of ability i am trying too maintain. i think it might be setting up a eventual move too stavelo too reduce the levodopa but gaining the effect of entacapone too add time too the life of the levodopa .
I think i remember Gus in another post/subject Suggesting spreading the dose out a little more as a change and i'll put that too the neuro and see what he says, it is at night when i have a gap too the following morning.
I'm taking 7 X 100mg of Madopar I(Dispersible) during the course of the day(PLUS 1 x 58mg); 5 X 100mg Stalevlo which includes the Entercapone 200mg and something else but I'm too lazy to get up and have a look and 3 Amantadine capsules a day. I also take Rasagiline, pills for my thyroid, Statins, pills for my bladder, codeine, Trazadone 250 mmg per day, 1 x Clonazapan 100micrograms, 2 zopeu dine tablets at night and Apo--go (apo-morphine) .98mg through the day and down to .60mg at night. I take one 50mg Tramadol at night. (Mustn't forget the Movicol!!
Anyway, after taking this concoction for a few years, they aren't helping enough so off I go to the hospital once more. If interesting, I'll let you know what happens.
All the best
that's quite a list of medication, i'm not sure i could remember too take all that or in a organised manner, i bought a day pill box the other day so i could see what i had taken without thinking?? had i or had i not taken them and also the pills box was in anticipation of the the added entacapone.
with all you take and not feeling they are helping enough, the expected entacapone for me i'm not expecting a miracle but or maybe as supa said around about 30 mins extra time or a little more or some benefit, perhaps i'll have something added for over night too bridge the gap.
Cassie, what a lot of meds to keep track of! Encourages me not to worry so much about increasing Madopar. Thanks. Will be interesting to know outcome of your next hospital visit.
Sea Angler, I am wondering about asking for slow release Madopar to replace my last Madopar of the evening in the hope that it will get me through the night. Can't remember when I last slept for more than 2 hours at a stretch. Its not so much the waking up I mind, its the lying there trying to empty mind of stupid stuff and not fidgeting about! Often I resort to listening to audible books or radio programmes downloaded onto ipad, which stops the boredom of many wakeful hours. Good thing my OH is a very sound sleeper and not easily disturbed.
I'll be interested too. no doubt others would be too Casie
my sleeping has been varied of late at night (with a occasional nap during the day) as well not sure if that's the partly too the current weather/air quality or like you lots churning away in the mind. I did have a pretty long day today from 4 am long story but it involved visiting hospital(i saw my neuro not intentionally but in passing), during the day due too circumstance i was later than usual taking one dose and a later dose was later still, but caught up this evening,
Result I feel extra stiff,tired, and stressed,a short walk with the dog was a hard work with all those variables dose life felt pretty short today.
Many thanks for your support.
From 'Boots', I buy 'five-in-packet' little plastic pots that screw together. Someone said they were for your medication when you go travelling and I had to buy enough for eight pots in a day, for seven days of the week. Therefore I had to buy more because of the number I personally use, remembering that one of the pots is a bottom (different from the others) and one top. Anyway, the extra's are to replace breakages.
So I place them in seven rows, eight in a row and start taking my meds from their packages which follow me through the day. I started doing this when I made a print out of my meds chart so I could follow what I needed and when. It's laborious and I have to be careful not to make any mistakes but it helps me to know what I'm taking.
I might not post anything straight after my app on Monday - it's all according what they say. but I shall write as soon as I can.
Love and stuff
yeah i got told by a wise person ( take little but often ) slow release helps alot at night time last for about 12hrs sinemet slow release. sea angler all the best
Hi Supa and Sea Angler,
nearly 74 and have been diagnosed for over 3 years but had symptoms at least a couple of years earlier.
I have no tremor,I am on a high dose of Madopar,I take 100/25 and 50/12.5 4 times a day I take them together at roughly 7am,11am,3pm and 7pm..I also take2 125 controlled release at bedtime,I took one initially but this was increased to 2 about 9 months ago.This has really helped with sleep,I also often hardly slept at all,now I get to sleep pretty quickly and am usually up once at night but get back to sleep ok .
I am also on amitrypmaline which also helps with sleep,I was on this occassionally before I was diagnosed with pd and the neurologist suggested I stay on it but it was the controlled release madopar that helped most.
Hope this helps AnneD
I went looking on boots the other day Casie, a lady showed me all they had including the little pots you mention, they also had like a paper back sized book thing(best i can describe it) inside was of remove-able long packs for each days pills i think in 4 sections( it might of been 2 layers of these in the book) for a weeks worth of pills,also documentation in the inside cover too write on, it looked the part but it was too much for what i wanted, it was £10 i think, so i went too lloyds chemist and they had a perfect 4 section day one for £1.99 i could put in my pocket where ever i go.
I am Hopeing too remain on that little and often Gus & Anne ( i take my madopar , 8 am 12pm 4pm 8pm but i think that leaves a gap if it lasts around 2.5 hrs) too keep something in reserve as things go on but i will push the point of a slow release over night,even so i think amitriptyline overnight is still beneficial, my gp thinks he'd like too ween me off it,but i'll make a case for it too remain, I'll report back wednesday evening.
Sea Angler - hope you are feeling better than on Friday. You obviously had a very stressful day. I find it doubly difficult to move properly when preoccupied, eg when my OH was unwell recently my walking was absolutely hopeless, couldn't start to move when I needed to, and it took a couple of weeks to improve. I suppose it is like multi tasking, a thing of the past for me, and the brain just can't cope. I really have to concentrate on it, saying to myself "stand up straight, big steps, walk across the room" etc et.c It is soooooo frustrating! If only we could turn the clock back and return to being the people we were.
Sometimes my dog looks at me as if to say "get a move on Mum, I thought you said we are going for a walk" when I'm struggling to get ready or can't get through the doorway. He responds to the command, "Ed, out of the way" when he's lurking in my way. . .but isn't always sure where it is safe for him to be, poor lad!!
Anne and Gus- thanks for that information. Really useful. Slow release sounds like a life saver - will defo follow it up with my neuro.
Best wishes to you all
hi sea angler
do you get any pain in legs as amitripyline works very well for this and also helps with your sleep, & is a anti-depressant i have been on them for about 7yrs as i suffer alot of nerve pain.have you looked on ebay for pill boxes ie organisers there are lots of them and cheap ! alot from abroad but they only take a couple weeks post. Supa i am going to have a word to my pd nurse about madopar i have had alot of feed back about this drug chew and sallow work in 5mins to give you a boost as my walking catches me out aswell all of a sudden legs not working aloud 3 a day.
Yes Supa very stressful tiring day friday but in one way it has kept me occupied since although i'm totally aware of my walking and others watching me walk visiting my dad i'm not sure who walks better him or me after him having a stroke, sitting listening too doctors and other patients in the ward there's much too compare it seems on stroke effects & recovery and parkinsons.
I do get pain Gus i'd say 75 % is in my legs too my feet, i am sure it's nerve or muscle pain in the calfs, my feet in the mornings are the worst and tender too i guess that's what the amitrptyline is sposed too combat neuropathic nerve pain so i can sleep.
Hi Pop pickers lol
I hope you are all keeping Cool and refreshed
It was 31 c as i drove into the hospital car park & in the waiting room of the clinic it was slightly more than that i was in a room full of patients waiting and sweating, times were 2 hrs behind, but the neuro whittled them down too a few mins each,so he was in a hurry, my turn last in the que for the day.
And in i went, how's things?, how's the memory?, hows the reflexs?, your a little stiff and slow today.. ok i'll put you on one extra pill(madopar) we will eventually be moving too entacapone with madopar (if i tolerate it) then i'll eventually move onto stavelo, i asked about a overnight, he said i'll look at tweaking it in 3 months, i can keep my amitriptyline.
So i see pd nurse next month, him again 3 months.
that's about it,
as i walked along the corridors too the exit, he over took me, i said "i'd never keep up with you" lol .
Well. . . Congratulations on keeping your sense of humour after that!
I felt really cross when I read your posting late last night. It is just not good enough that a consultant gets 2 hours behind (how?) then short-changes the rest of his "list" giving them only a few minutes each. How would he feel if it was him or a family member on the receiving end? We are not just hospital numbers and " conditions " , but concerned individuals who have been thinking about and waiting for their appointment for weeks or months, spent time and money travelling to it, for whom being given a bit more of a personalised service would do wonders for the morale.
Rant over . . . I suppose at the end of the day their hands are tied as they cannot suddenly come up with a miracle cure (which would put them out of a job incidentally) & can only offer a limited range of drugs that seem to work differently for everybody or sometimes not at all. At my first consultant meeting he told me that I am my own guinea pig. Not very helpful, but I now realise how hugely this disease can vary from one person to another.
The meds you have been offered were probably as you anticipated, except for no offer of slow release yet for night time use. They do prefer to change just one thing at a time to monitor any effect. Hope the extra Madopar will help you. As I will not see my neuro until late autumn I have emailed his secretary asking if he thinks a slow release in place of my last Madopar of the day would reduce my nighttime wakefulness..
Trying to be a patient patient while waiting for his reply!
Yes humour is all we have left sometimes I guess i'll have too choose wisely how i use that one extra pill, first thing in the morning?? when i'm like a crumpled coca cola can, last thing at night?? too help the following morning, or high noon lol i can guinea pig myself there or chop n change,
I remember at my last appointment with him last October he said i'll see you in 4 months, yesterday he said it's been 8 months since i last saw you, he also said i'll see you next in 3 months, so i can read i'll see you in 5 months perhaps into that.
I do however have an appointment next month with the PD nurse, she generally takes a little more time at appointments since twice seeing her since last October.
Well, OH and I went up to The National in Queens Square on Monday. He's great with driving about London and he even managed to get a parking space very near the front door of the hospital.
Didn't keep us waiting too long in the Clinic and firstly saw the Registrar who took all the details of all that's been happening to me and examined me. He then went off to see the Prof and they took such a long time deliberating but they finally called us in.
Prof thinks that my regime is so complicated that he can't understand it so how was I going to make any sense of it. He thought I was taking much to much Madopar, especially in the mornings and he wants me to replace it with a higher dose of Stalevo which, of course, has the Entacapone in it. He called this Plan 1 of many more plans, the ultimate one being DBS, which we didn't discuss at this meeting but I did have a feeling that he had discussed this with OH on the 'phone!
I'm collecting strawberries now to make a cake with so better get going before I go "off".