when I was first diagnosed, I was put on 3 sinemet a day and for the first six months, it worked well . Eighteen months later I'm on combination of drugs and sometimes they appear to work and other days I'm completely washed out and find it hard to get up, which in turn leads to difficulty in movement, joint pain and headaches for which I've been given co-codomol . My drug regime at the moment is 5 sinemet 25/100 throughout the day , 1mg rasagiline, 1mg clonazepam at night combined with 4mg ropinirole and 1 sinemet 50/200mg taken also at night.
i also take movicol on a regular basis. Do people think it's the combination of drugs which is making me feel woozy.? I don't have a tremor any more or very rarely but my movement appears to be getting worse. I try to do a little exercise given to me by the physiotherapist each day but at the moment life is quite hard. Normally I'm a very positive person but I wonder if the combination of drugs is too strong. What do others think.? I'm seeing my consultant in early Feb and any advice would be appreciated.
your sinemet night time one is 9.30 pm 250mg cr this last 12 hrs so i think you are taking too much at the wrong times i would suggest taking your first sinemet at 8 am as your 250mg cr is still in your blood stream till 10am ,so if you took your day time one at 8 am then this would start working by 9 am then this one last 3hrs so if your next one is 12pm then 3.30-4 pm then 8pm then your cr at 9.30 pm . 125mg have a period of 4 hrs 1st half hr to come on 3hr then last half hr wearing off ! i know people have different does .i am on 8am 125mg 10am 62.5mg 12pm 125mg 2pm 62.5mg 4pm 125mg 6pm 62.5mg 8pm 125mg 10 pm 250mg cr . i take 200mg entacaphone with every 125mg and also take 1mg azilect ( rasagline ) 8 am .i am not a doctor but i thinking you need a reveiw on your timing & does of meds . hope it all works out for you keep me informed gus ! ie i also have dbs recently they added rasagline & entacapone to my meds to help my walking & freezing & these had great affects & my walking has inproved 100 %
Thank you for this Gus. I think my medication is not quite right and you are confirming it.i am seeing the consultant on 3rd Feb therefore I can talk to him about it. I certainly feel over drugged at the moment
i really do appreciate your reply. It's so reassuring to know people are out there listening to you.
Hi miss zuka, I assume you were diagnosed about two years ago? Then the amount of drugs is fairly high, but everyone is different.Your age plays a role too in deciding what and how many drugs to take.and your symptoms, and of course the severity of these symptoms. The rule is to take the smallest effective dose, so every time there is a change of drugs it will be a bit of trial and error before you hit upon the right regime. Do you find the Clonazepam gives you a good sleep? Did you try a 125 mg tablet of the Sinemet CR version, before you went on to the 250 mg?
Gus, Your DBS must play a role in your drug regime , it will have altered the amount of drugs you take? I am afraid I disagree with you about the length of time the levodopa works/stays in your blood. Maybe in yours, but you take Entacapone with your levodopa to extend the time it is effective, that's why you get the four hours, I sometimes only get an hour to one and a half hours out of 125 mg levodopa(in my case Sinemet) alone. After all it is a short acting drug. The absorption of Sinemet CR is less predictable, that is the reason why it is generally not prescribed during daytime., but 12 hours is very optimistic. One should not take CR doses too close together(at least 4 hours between doses) and that is usually the length of time it works for me, therefore I take one 125 mg Sinemet CR at 22.30hrs. and another later during the night, somewhere between 3 am and 4.3o am. Not a fixed time as I do not want to set an alarm clock. My sleep is very fragmented as it depends very much on how comfortable I am in bed (you could say how "on" I am ,as opposed to "off" )The further you are into the disease the more unpredictable the workings of the drugs apparently.
i did not see any entacpone in miss zuka drugs , this is why i never explained how they work ! And for someone who has only had pd for 2yrs the 4hr slot i would think works .If you ask pd nurse it takes half hour to start working 3hr ON ! time and last half hour wearing OFF ! .I know this is not the case for everyone longer you have pd as i only used to get 1-2 hrs ON! time. Did miss zuka say she was taking two cr s .i always again was told cr s last 12 hrs & The first 1hr to get into system then 10 hrs helping you move around in bed easier then last our wearing OFF !. And also never take sinemet before going to bed as you will find it hard to sleep ! as your meds will be keeping your brain wide awake ! Any way this is how my pd movement specialist told me how it works & my dbs proffessoer. This is why i take 125mg & entacapone say 8pm & like you say all people are different & become tolerant to drug so i take a 62.5mg inbetween my 8am to 12pm. making my ON1 very effective as i also take entacapone to keep level of ON1 time .But i do have very aggressive pd for last 9 yrs.And yes i was on alot more sinemet before opperation but had the nasty dyskinectic but had to put up with that so i had some control of my body. Thats why dbs was my best option as my life was getting to the point every day having a fight to control my movements.We all have different veiws but if miss zuka can take a bit off help from everyone then she will know that (amazing )feeling when you get your drugs right !
My Pd nurse wanted me too stay up late too take my last pill,but it didnt make sense to stay up late too take a pill too help me sleep, so i put it back time wise, so when i was ready too sleep i had the effect of the pills drifting me off into a restfull sleep. which is 1 madopar CR + 1 25mg amitriptyline.
i have 4 doses of madopar +1 entacapone through the day and one of those is a smaller dose in the early evening when im winding down for the day.
very surprised you only take 1 entacpone ,i would have thought 3 tablets with the higher dose madopar ,as your walking got any better yet mmy friend .....gus just read it again do you take 4 ,bit in a mess to day as got too take dog to vets for X-rays cartilage might have gone in one leg !
I take 1 entacapone with each dose(200mg) , so 4 madopar+1 x 3 and then 3 +1 early evening(like you said about being wide awake, when i want too wind down), and then mid evening 9pm+ last dose of 1 cr+ 1 amtriptyline so when i am tired and ready to drift off to sleep i generally can without interuption of pain ect over night.
All seems ok. hope that makes a little more sense?.
walkings ok, i walked a couple of miles along the beach other day( i did feel it for a day or two afterwards), though i've been spending more time of late ticking things off i need to get done, house, Car, photo's of clare, her ashes ect which has kept me busy.
Can I ask a basic medication question. Have low dose madopar morning and evening. That's ok but when I try the midday dose it seems to make me very sleepy in afternoon. Is this normal
I Do sometimes feel tired in the afternoon, i'm not sure if that's to do with meds? or ive just used up energy from the morning into the afternoon i haven't really monitored it for difference but, if i feel tired i have the luxury of having a short nap of less than a hour then i feel fine. i try to take the first dose of the morning on time and a noon one as the most important, but the other two i feel i can be a little flexible(for a boost?), and a final CR dose for over night with 25mg amitriptyline.
so i take mine 9am 12 noon 3-4pm 7-8pm 9pm +
I don't spose that helps? a division of total dose spread over your day?. something to discuss with your pd nurse?.
Thank you SA. She says to stick to just type two doses for now so will do that for a bit till my next appt. just worries me for when I go back to work as won't b able to nap. Thanks for your help.
She said just take the two madapar one in morning and one teatime then till I next see her as no urgency to do 3 doses if I can't. I seem to tolerate that ok. It's when I tried the third that I ended up sleeping for about 2.5 hours!!
I've told most people what I take every day so I won't bore you with it but I can certainly understand what has been said about Speech Therapy. I went to see a therapist once a week for six weeks a couple of years ago!.
I took to heart everything that I was taught. I kept to this regime for approximately two weeks then withered off to nothing. ............. . So the exercises work if you have the time and energy.and patience to do them but who has?
Things. are a bit difficult at home at the moment. My husband had a knee replacement operation a week ago, which is a very painful op to go through. Things will get better as he gets over this.
Ok i see Sue, or she will see, did you feel you needed a 3rd ?? as in the feeling the effect of pill was wearing off?, or just happy with 2??. sure she will come up with a solution if you might feel you need more. i was quite happy to juggle times & doses rather than take more.
I was sposed too have my knee's looked at years ago, i dislocated them several times Casie but always left them,i'll just walk n walk too make um stronger i thought ,much like i left this too develop, recovery i was told could of been a long process learning too walk again life n work i thought didn't allow me time for that at the time. so ouch for your other half.
