I was just wondering what people do when their meds don't work. Do you wait until next meds are due in sat 3-4 hours. If so what do you do in that off time ( I can't walk or talk much and can't think straight so I can only llie on the bed and often sleep.
Or do you take more tablets. I usually take more tablets but I have to be careful otherwise I go otherwvay and get dystonia
Hi Connie,
As I try to keep meds to a minimum, on the occasions they don't work I just wait it out.
What do you do with your time when off. I can't do anything that's my problem and they are forever not working these days . But I've been on them nearly 5 years
I rest.
In the past when I have had repeated periods of 'staying Off' after taking a tablet, I have reduced the dose (say from 100mg down to taking a 75mg Levodopa) to check I am not taking too high a dose.
I currently start my day on 75mg (and it has been as high as starting the day with a 125mg tablet).
I am convinced PD progression is sometimes ' two step > three steps< '
It's my understanding that taking additional meds usually doesn't work and you're more likely to suffer the negative side effects than the therapeutic benefit. As miserable as you may feel when you're off I try to wait it out until my next regular dose. I might try to read or watch a bit of tv, but accompanying restlessness during an off period usually prevents doing anything 😒. Sorry I can't offer anything more positive.
I take sinemet 25 / 100 and when a dose doesn't kick in I usually will take another half. It's usually related to what I've eaten and eventually it will start working although not especially well or for very long. The times this is most aggravating is when I'm hiking or riding my bike so I try to do that in the morning before I have any protein.
exaactly, enidah. i have to really pay attention, to what i eat, when i eat it, and how much i eat. small meals at breakfast and lunch, at least a half hour after meds, and 2 hrs before next dose is due, and no protein until the evening meal, and then its off to bed early. but then i am able to function (almost normally) with very little off time (usually only a few minutes a day if at all)
Oh it difficult to know what is the right thing to do
Totally, we are all different; And our 'need & response' is peculiar to each and everyone of us. Chat with your Dr. & Neuro specialist who should know how to help you.
Hope you find a path forward that suits You.
What helped me when I started to have episodes of meds not working, was to keep a journal, of my on/off times, dyskinesia, what and when I ate. This pointed out, in my case, that I have a problem with the protein intake. Since I am taking sinemet/ mucuna pruriens, at 2hour interval, it is a bit difficult to to allow for sufficient time between the meds and the food. So I play with the food. Since then, I started to have less off-time due to the meds not working.
What you mean play withe food. How long have you been taken meds
i am on sinemet since 2013, before been on Mirapex. Play with food, means that I am looking to eat as less proteins as possible before the 18:30 dinner. Also the size of the serving seems to play a role in the meds working od not. Te more I eat, the more probable the meds not working.
Maybe your whole med schedule could be changed? Perhaps smaller doses (half pills) closer together? I suffer from severe dyskinesia on very low doses and changing from c/l 25/100 to c/l 10/100 has made a HUGE difference on the positive side. I am the most stable I have been in two years, but I still play with dose and timing regularly. My doctors are fine with it.
Hi, how would you explain this difference? You're taking the same amount of levodopa it's just a difference in Carbidopa.
It delivers the dose differently. I had read about it a while ago and my previous neuro (he retired last year) recommended it. I don't know the exact mechanism of why. I just know that I have more stability and less (but still plenty) dyskinesia.
How long have you been diagnosed?
Symptoms started 2008, diagnosed officially 2010.
I've been diagnosed 21 years and I'm very sensitive to Sinemet. Never heard of changing dosage like that. I' also have had DBS which helped for a short time.
See my response to Connie18 below.
What to you mean you play with timings and doses. I thought that wasn't allowed as it messed with your brain
I have no short answer to this. I have always adjusted my dose and timing according to how I feel. I had dyskinesia just four months into low doses of c/l so I started cutting my pills in half and stretching them out as far as possible. I went off all meds for a year which was horrible, but it gave me insight into how bad things could be. I am nine years with PD and I only take 250-300mg TOTAL daily of c/l 10/100. If I have a longer day I may increase that by 50mg. I do not take any meds after 6 PM. I am super slow for a couple of hours after the meds wear off, but then I am pretty functional before bed (I do 20 minutes of exercise and stretching right before bed) between 11pm-1am. This works for me, but we are all different.
I have seen several neurologists, including some top docs through research I have participated in; none have discouraged me from using my knowledge of my body to determine what is best for me.
Thing to do is to understand what is going on those occasions when your medicine is not working. For example, my morning dose of Sinemet did not work because I was also taking a multivitamin and B complex at the same time. Both of those contain substantial amounts of vitamin B6 which will inactivate Sinemet and any other form of carbidopa levodopa.
yes, we have to be in tuned with our bodies, and pay attention to anything that we ingest, and everything that were exposed to. its been 12 yrs since i was diagnosed, and i think the reason i feel as well as i do now, is because im constantly trying to figure out what works best. we cant depend on our doctors to figure it out for us.
Hi! I´ve read that about vitamin B6! I´d like to know if your dose of Sinemet works hours after the intake of the suplements. Thanks.
Allowing a two hour interval between taking B6 and Sinemet is sufficient to keep them from deactivating each other.
For me it's all about the protein. If I have any amount during the day the pill can take an hour or up to 2 hours to work. I try to wait until I get home around 5-6 to have protein for dinner and no more meds if I'm in for the night.
I use injectable Apokyn, a rescue Med that does the trick. Check it out!
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