Can someone please tell me why people say that it's important to take our medication at the same time every day? My PD nurse suggests I take my Madopar at: 6.30am. 9.30am 12.30pm. 3.30pm. and 7pm. Surely, if we stick to a pattern, then our brain expects levodopa at a certain time every day and becomes very lazy. Also, sometimes I wake up earlier that 6-6.30am. and sometimes I have a lie in until 8 or 9am. I always take my meds. as soon as I'm awake and adjust the timings to suit, making sure that they are taken on an empty stomach. Wouldn't our brain work better and try and produce dopamine, if it wasn't quite sure when the next artificial dose was coming? Or am I just being naive and stupid????
You raise an interesting issue.
The main reason that I can see for keeping to a strict timetable is compliance: you are less likely to forget to take a dose.
I do things differently. I take 1mg rasagiline and 8mg ropinirole CR when I get up. I also have five 75mg Stalevo pills to take during the day, nominally three hours apart. I use these as needed. If I'm doing well, I delay taking the next pill. Rarely, if I'm doing badly, I may bring forward a dose. This means that some days I take only four of the five pills and on a very few days, normally when I've been very active, I take six.
My aim is to keep dopamine levels as constant as possible, but at a level that gives symptomatic relief. This has to account for the dopamine still being produced in my brain, the dopamine reservoirs still available, the pharmacokinetic properties of levodopa (in particular, TMAX about 60 minutes, THALF about 90 minutes), gastric emptying (levodopa is not absorbed in the stomach), protein transport competition (protein in the diet taken close to levodopa tends to decrease the amount absorbed).
I wondered that too. I'm only on one dose a day but I change by an hour here and there, depending on work or weekends.
They do say that changing up your exercise routine and activities keeps the brain sharp. I wonder if the same is for meds.
Hi John and DivineR,
Thanks both, for your thoughts. As you say John, I wonder if we're told to take them at a certain time, so we remember to actually take them. I shall continue to adjust my meds. to suit whatever I happen to be doing on a particular day, until someone tells me different!
Taking your medication at the same time every day IS important. Maybe not if you are in the early stages of P, BUT, later on it is vital to avoid the peaks and troughs of being under medicated.and 'of'f'' periods between doses. Do what is suggested by your neurologist is my advice, they are the experts.
We adjust the meds if OH needs to get up early of a day but never the interval between meds.Taking meds earlier than the usual time does mean an extra dose some days.
Dopamine levels need to be kept constant, and, as P progresses, there are less dopamine producing cells to achieve this.
I take my levodopa medication every 2-2,5 hrs,. You cannot take it much closer together than that, but at this stage even this frequent replenishing of the drug is not sufficient. After one and a half hours I am more often than not "off", very suddenly sometimes, which can be very inconvenient sometimes. As far as I know the production of dopamine, the exact amount produced throughout the day and night, cannot be measured and is not known. Do they know how much is produced and , as an example, how much is needed for specific tasks, like exercise, an emotional discussions, or at rest/relaxation or during sleep?I believe this is not known, we are not like diabetics, who can measure and adjust the amount of insulin needed all through the day. I occasionally take the odd extra 62.5mg tablet between scheduled med. times too. I wish I could believe that "the neurologists are the experts".Are there any experts. After all the treatment is often a question of "trial and error".....We are the guinea pigs.
I do agree with you Kate. OH takes his meds every2 and a 1/2 hours and we recently tried every 2 hours BUT it made no difference to their off periods. Extended off periods of 2 hours or more between each dose, all day every day.
My comment about neurologists being the experts, I will qualify that with, as far as they are able. I don't think that we can expect any more than that unfortunately. That has been the bottom line for the last 19 years since diagnosis, aged 47. and with no new treatments on the horizon, despite all the millions of £'s that are invested in research.
My next statement may well result in a warning BUT when I see posts on this forum from people who have a family member in their 80's with Parkinsons I think that they should count themselves lucky that the condition struck so late in their lives, not in their 40's, as it did with us and many others!
I remember my late father's comment on my OH being diagnosed, he was then almost 80 years old, and he wished that it was him that had Parkinsons, as he knew, after being a carer for the local authority for many years after taking early retirement, that he would be, he said, long gone before it got really bad.
I wish he was here with me now for the support that I need right now.
I take mine 4 hrs apart, but i'll move them a little eachway if i feel off, its 6.30 am so ive just taken my first dose of the day but i wont be moving just yet and dinner time dose 'today' will be a little earlier, at the end of the day i generally draw things down, we all like to relax when our day is done, so i take a smaller dose then, And when i start too feel naturally tired i'll pop the over night dose, at which ever time that may be, rather than staying up to take a pill.
Our neuro's might be experts but on one occasion i was quite taken aback when a student sat in on an appointment i told the student i hoped she had learnt something and would continue to learn from sufferers, the Neuro's sharp retort was 'No a book', it made me wonder and think maybe some Neuro's are set in their ways and thinking as on another visit i asked him if his views on safinamide, it runs alongside sinemet or madopar as a alternative to entacapone, but the Neuro started talking about 'stalevo' and generic at that or maybe he just wasnt listening?.
My wife takes 5x 100/25 every 3 hours, the half Sinemet overnight one she stopped talking because it didn't do anything for her she sleeps ok. I agree about the neuros and nurses it's mostly guess work.
There have been some interesting comments made. I agree that the neurologists are supposed to be the experts, but ultimately WE become the experts of our own condition. I take my Madopar every 3hrs., but I don't always start at 6.30am. It takes a good half hour to have any effect and is wearing off after a couple of hours, so not happy with that. I supplement it with 2 doses of Mucuna Pruriens during the day, which extends the effectiveness of the Madopar. I am reluctant to take any other prescribed drugs which might do the same job. I just wish they'd hurry up and find out what causes Parkinson's and a way of preventing it, or at least arresting it.
Is your visit to my homeland still in the planning, if so dont give any money to the border guards, they are not real and nor are the AK47S (I THINK )
Yes, yes, will get in touch with TeeHee and arrange it. What date were you thinking of? Can't do July 6th., but any other date is fine!
Hi these macula pruriens how much do you know how to take .lm on stalevo every 4 hr s and 1 mg Rasagiline and a neupro patch.lm intrigued on if they would help my off periods .
First a ittle Geeeerman for you, Vorsprung Technic, unt Venn Tractor Kipt Festhalten em Lenkrod Nict Abspingen nein nein Absprigen
Vell ist understood Frau Twinks ja un momente Verboten unt Montag und Sonnertag Donner unt Blitzen Frau Twinks
VELL GUTEN TAG, RAUS RAUS ENGLANDER
Well you may wonder dear friend why my Geeeerman mate has nosed into my post to you, well my wife and I were chatting to some GEEEEEERMANS at Tynemouth Priory at least vee ver Kommuicating viz zem ass uvill zee I kan sprechen veery gut Geeerman zo vee gutalong likebzee houzan onfireze Ja, so you can imagine what fun we had, it turned out my Grampy Basil shot down his father Heimlch, in 1943 over Kent but Granpa Basil so elated by his fifth kill making him a ace, he ommited the first and last law of dog fighting keep weavin and beware of the Hun in the Sun both these rules are essential if you wish to continue living, now Basil was very skilled but he used to tell us of his prowess with three Mks of SPITFIRE, and his beloved HAWKER TEMPEST the same aircraft he was piloting when a very sly GEEEERMAN in a ME109G, who was climbing hard after strafing the local PUB and other ground targets,, used his last 6 cannon shells on Granpas big radial engine which disintegrated and he immediately lost is left foot (it didnt stop him) now you will have heard of miracle escapes and coincedences well as his much loved Tempest ( MARY ) named after my Gran long deceased ) hurtled earthward he slid back the hood and bailed out, cursing and swearing, so once free of the Aircraft he had a litle time to admire the view so floating serenely on a gentle warm breeze he scanned for a safe landing area, then he spotted another parachute about a mile away and thought some other poor sod in the same situation, well yes youve guessed it was my new friends dad Heimlich, who was waving to Granpa and laughing, , at the time he thought he would shoot him with his pistol but it was such a lovely day and eventually the both reache d there landings 300yds apart Heimlich firs then Grampy which was the first time he noticed he was missing part of his left limb, it hurt, the hunter hunted as it were, so Heimy as he was named ran to Grandad and in german "yu arr luzing blood kamerad " and used his parachute to make a Tornique to stop him leekin out, the the police and home guard arrived and they shook hands and never saw each other again,, and here I was chattig to his son oh the tales, So the moral of this post is do not relax and ignore the rules for that route is only for fuels, ( didnt want to make out you are a fuel) adhere to your times as it rhymes with this rhyme, and maybe we will meet some time, Grampy passed 11yr back, oh he got a prosthetic foot and was flying 6 months later.
Besetest all things you Frau TWINKS FED
OK WELL YOU GIVE US A DATE THEN WE WILL OK IT
Hi Twinks - back 'to the timing of medication', I was advised to take my meds at 9.30am as well,but if I get up at 7.30am I struggle to walk round at first then it gets better, even to the stage that it improves and I sometimes forget to take the pills! It could be anytime before I feel any effect of not having had them, then I have two Sinimet to space inbetween to take before bedtime. So then my timings out for the next day, so I say 'take them as and when you feel the need for them' , but no doubt someone will disagree with me.
Hope this helps! Have a goodtime in Geordie land when you go, I used to live in Sunderland for my sins! - Sheila
I bought the white powdered version of Mucuna Pruriens last year, from SPIRIT-SCENTS XYZ. It's natural L-Dopa 90% and it comes with a tiny scoop, which holds 100mg. I take one or two scoops a day mixed with a little milk. A 75g. packet lasts for a g e s......
It definitely makes my Madopar last longer, but if you're thinking of adding it to your regime, please talk to your doctor/PD nurse/neurologist, first. I was fortunate that my PD nurse and doctor were happy for me to experiment with it. But not all health care professionals will agree. I did a lot of research about it beforehand. Hope this helps.
OH I AM A COMPLETE T//t AT TIMES
The tale above was of my Grandads exploits, and but one of the long stories he would tell us younguns, or yung unns, he was also one of only three survivors of the Bismark Hood tradgedy, and went ashore on D DAY but with the Americans on OMAHA, BEACH, it wasnt until I grew a bit I worked out that he would have been at war 105yrs, while everyone else were quite content with the 1939/45 short play version, he was in the war and took a high velocity round to the head normally unsurvivable he had savage scars on his forhead plastic surgery was not to the miracles we see now standard and it left him well three bricks short if you get my meaning poor soul died about 11yrs back with our mutual enemy pd for company pd made the last two years hell but he will have the upper hand now eh, but he used to insist on his drugs on time or there would be war on, no doubt one of the many wars he fought in in the 105 yrs he struggled against the NAZIS and the Japs some times at the same time??? and it worked well until dementia was robbing him of his imagination and you know he went totally silent never said a word for2 yrs
So yes take your pills and feel the thrills
What is the optimum schedule for taking madopar? Say I have six tablets to take each day, do I take them individually, or two three times a day or three twice a day. Do I take one or two before going to bed, or do I avoid taking any near bed time? Do I take them before or after meals. All I have been told is to take them at the same time each day and conversely to experiment to determine what works for me.