Anyone else take there meds when you start feeling the off coming on?

[RS313]

hello, I used to have a strict schedule taking my C/L but now i just take it when i start to feel like i am entering my OFF period. Is this something others do or just me? Every day is different now the whole "taking on a schedule" doesnt work any more

[johntPM]

Yes, I do something similar. I call it "dynamic dosing". I notice the pre-"off" symptoms, a slight reduction in performance, and take a pill to come in just when I would otherwise be "off". It is probably easier for me to achieve this because in addition to 5x75 mg of Stalevo (which itself has a longer half-life than C/L), I take 1x8 mg of ropinirole CR which has a longer half-life still. This means that the "offs" come more slowly.

[RS313 in reply to johntPM]

I was diagnosed 3 years ago and started taking 25/100 C/L 3 x a day about 5 hours apart now it last more like 3 hours

[neilp02 in reply to johntPM]

Hi JohntPM I have had experience with the Stalevo and have been doing it like you have , by taking your dose when your body sends signals that you are headed towards an off period. I have been having some serious fluctuations with this disease and was in the hospital for 3 weeks to try and get back on a routine schedule with my doss again and it seems to be working ok thus far. They took me off of the stalevo and put me on regular carbo levadopa , at one every 3 hours, plus in addition I take Amantadine twice a day too. I was having quite a time during my off periods and wouldn't come out of an off period for sometimes a couple of hours. The 3 hour schedule seems to work alright except the off periods still occur to often, but for the most part have been less intense. I have read that if you get off schedule on the timing of the doses it can affect how severe your Parkinsons symptoms will be. I have Parkinsons in the legs and feet , so when I go into an off period, I just can't do anything but lay in bed or a recliner till things calm down. Whenyou add in tremors as additional symptoms it doesn't make things any better either. Hope I have given you some info that could help you out. Because this disease is so indivdiualistic everyone's eexperience is not the same. Good Luck.

[MBAnderson]

I do too. I call it as needed. Taking meds by the clock doesn't work for me because some days are good, i.e., I may feel good most of the day and don't need meds, while other days are the opposite

[RS313 in reply to MBAnderson]

Oh well i take meds every day but some days are better than others and some days i feel its not working at all. My tremors are constant it seems some days

[lenamm]

I have to rotate between 200mg and 300mg ER a day or my dyskinesia gets worse if I don't do the two pill days a couple times a week. On the days I work I time my meds around work (I work three days a week) so i take them at more set times. On my off days I take them when I feel like I should. Only way that works for me.

[RS313]

i started out with the ER but now it doesnt seem to work at all. I switched to the IR and i have dyskinesias too it is a hard thing to decide weather i need the tremors to be gone or deal with dyskinesia both are very bothersome and i still work full time

[lenamm in reply to RS313]

I'm the opposite - started on IR but can no longer take it because all it does is cause dyskinesia at any dose, even 25 or 50mg. I get biphasic dyskinesia so only when my dopamine levels change so ER works better. My dyskinesia got so bad on only 300-450mg of C/L that i was not functional. I had brain surgery on my worst side so only get milder dyskinesia on what was my "good side" that had no surgery. Dyskinesia is gone on my surgery side.

[Enidah]

Oh, woe is us! I am sitting here in my chair very uncomfortable and in some pain and just took another pill,second within an hour and a half, waiting for pills to take effect. I had some yogurt which I think is causing the problem.

So no, at this point, I can't imagine being on any kind of schedule. It is dynamic dosing for me...now if I just felt dynamic wouldn't that be great!

[Bazillion in reply to Enidah]

Hi Enidah, long time since I posted ,glad to see you are still going strong. After starting on Madopar 100/25 TDS I was taking my pills religiously on time every time f or only 5-6 months and started getting dyskinesia ,it worried the wife more than me but i decided to have the same dose but in smaller amounts more frequently. This worked fine for about a year then I had to increase an extra50/12.5.thiswas ok for a while but 50/12.5 first thing didn’t get me going.long story short I now take 100/25 at 8am and while I feel that wearing off take a second one,and as long as I’m ok wait till I feel I need a third one. Often the third one is so late in the day I only need a 50/12.5 so effectively I’ve reduced my dose. I’ve come to the conclusion I know my PD enough to knowwhat I need and when and as long as I can take as little as possible I’m doing fine.There is no one size fits all we are all different and our needs are different.

[johntPM]

Enidah gives a good example of "lost doses" (you take a pill and never get any perceived benefit). There are also "delayed doses" (it takes longer than normal to get into an "on" state). This creates a problem for the dynamic doser, if you take a dose and a hour later, say, you haven't felt the pill take effect do you assume it is a lost dose and take a new pill. Or, do you wait, hoping it will take effect? Except in exceptional circumstances (e.g. long distance walking). I limit myself to taking no more than one extra dose per day.

My PD drug regimen is 8 mg of ropinirole CR, 1 mg rasagiline, 1 sachet of Movicol, and 5 x 75 mg Stalevo. I almost always take the ropinirole and the rasagiline. I dynamic dose the Stalevo. I don't keep a record of the number of Stalevo 75 mg that I take in a day, but rough estimates are 3 pills on 5% of days, 4 pills on 30% of days, 5 pills on 60% of days, 6 pills on 5% of days.

[andrehypnotic]

You are on the right path now.The more and longer you take those outdated drugs from many years ago,the sooner you will be in your grave or lose your mind and body.

[Grumpy77 in reply to andrehypnotic]

Can you explain a bit more and whose post are referring to?

[RS313 in reply to andrehypnotic]

HUH???

[jeffmayer]

I do take half before it's due sometimes better than being a cripple although I don't think it's recommended

[RS313 in reply to jeffmayer]

yes i take a half sometimes in between too.it helps me be able to work better

[Zella23]

My husband has been adjusting dose of IR Modopar C/L as he began to get more dyskinesia after taking 4 doses a day of 25/100, after about 4 years of taking it. Neuro said he was under-dosed and wanted him to increase doses. My husband didn’t want to do this as the dyskinesia was worse than the PD symptoms.

Added in Rasigiline gradually, this helped with PD but dyskinesia still worse.

Added in Amantadine twice a day and dyskinesia has more or less gone, a few side effects but nothing worse than dyskinesia.

Now reduced the dose of Modopar and quite often forgets to take them so doesn’t have on and off time and never has had.

[jeffmayer in reply to Zella23]

Heard horror stories about amantadine take it there not true dyskinesia bad some days been prescribed amantadine bit wary of taking it

[Zella23 in reply to jeffmayer]

No real problem s with Amantadine so far, my husband was prescribed Pramipexole and we d heard awful stories about that so he wasn’t keen and didn’t take it. Lots of PWP have no problems with either drug so I guess it’s what drugs suits, and ‘one size doesn’t fit all’.

He does however adjust C/L - and recently has been exercising more, hoping to see Neuro in 2 weeks for a review, lockdown permitting!

[flyswat]

Hi, we really like your idea of taking meds when you need them. My husband is just not sure if he gets enough warning, please let us know how you know. Many thanks

flyswat

[johntPM in reply to flyswat]

I think the leading indicators of being about to go "off" vary from person to person. As I wrote in a previous reply on this thread, it is probably easier for me because my regimen includes medications with a higher half-life. But for me signs of an impending "off" are:

-I start to tremor;

-I am stiffer;

- my typing gets slower.

If you're worried about whether this technique is for you, you can start with a hybrid approach, where you bring forward a dose or delay a dose by a maximum of 10 minutes, say.

[RS313 in reply to flyswat]

hello i start to feel it in my right leg and foot when it is getting time to take more meds.My foot starts to feel heavy and then the shaking comes slightly it almost feels like my foot is falling asleep. i also feel a little slow and sluggish. as soon a s i fell that i take a pill and it goes away. some days i can go longer some not so much.

[buedog]

Good morning I've have similar PD issues and have found Yoga and QI Gong and walking are good movements when approaching the off time all which I enjoy , I've got a DBS. and take C/L with 8mg ropinirole er

[Nuthatcher]

I try to stick to my schedule. I am in a study currently for a new extended release drug. Hopefully it will be on the market soon!

[RS313 in reply to Nuthatcher]

Nuthatcher

Interested in knowing how things went with the new ER drug you started?

[Hidden]

By the time I detect I am going off, it is too late.

I get reliable levodopa performance (i.e., I can follow a strict dosing schedule and avoid erratic off-times, “lost doses”, “delayed doses”) by,

+ Limiting the protein I eat before the last dose of the day (< 5 grams per dosing interval) (*** this is by far the most important part for me ***),

+ avoiding eating large meals before the last dose of the day,

+ avoiding meals containing a lot of fat before before the last dose of the day, and

+ endeavoring to keep my bowels moving (with Miralax)

[PalmSprings]

Great post! I “dynamic dose”. I didn’t have a term for what I was doing but that describes it perfectly. I started this shortly after being diagnosed when I realized the blank stares from the neuro’s I saw meant they only had an arsenal of drugs to prescribe but that the journey “we” all take is unique, so be strong enough and creative enough to figure it out yourself. Good luck and happy journey all!

[Joanne_Joyce]

I used to try to take mine every four hours but now I takes mine (Stalivo 150, pramipexole) as soon as I feel the signs of wearing off. That works much better for me since if I don't let my dopamine level get too low my next dose starts working sooner. I'm more or less on an every 3 hour schedule now.