Timing of medication?


#1

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????

Twinks


#2

Twinks,

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).

John


#3
Hi Twinks, 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.

#4

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!

Twinks.


#5

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.


#6

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. 


#7

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.

 


#8

 

Hi

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?.


#9

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.


#10

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.

Twinks.


#11

big grin

                                   Dear Twinks

                    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 )

                                                                               fed


#12

Hi Fed,  

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!

Twinks


#13

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 . 


#14

coolbig grin

           Hello Twinks

                      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


#15

big grin

                    OK WELL YOU  GIVE US A DATE THEN WE WILL  OK IT

                                                       FED


#16

 

 

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


#17

Hi Beany,

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.

Twinks.


#18

big grinOH 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

                                                                 FEDexlike4