Base camp

I write with some hesitation and a lot of caution. It is very rare for me to talk about medication and even rarer to me to make any kind of recommendation or comment especially pertaining to change. However this is an adult community and we are all sharing our knowledge in order that some small detail may make a big positive change for anyone of us so on that basis I am going to continue but please I implore each and every one of us to be mindful and responsible about our health and Health Care.

I have made a very simple and somewhat obvious change to the way I take my medication how it was not obvious to me I'm not sure but perhaps it is because I rarely focus on my illness and even less so on my medication but of late I have have necessity to do so. Instead of taking my levodopa three times a day I have broken each tablet in half and I am taking 1/2 6 times a day. It is especially important to note that my levodopa tablets have a line down them this line denotes the fact that the manufacturers have created a tablet which has an equal amount of active ingredient in each half if there is no line this is not the case and therefore you will not be getting a true 50% dosage.

I am only on the third day of this new regime but already I have noticed a significant improvement in my physical well-being and movement. It is early days however I am encouraged thus far I am going to continue to monitor progress and I will report back with some more meaningful information should I find it.

It does seem obvious to me now that by making this adjustment my underlying base level of levodopa has been raised. Without the base camp at Everest climbers would have to start from the bottom every time and I guess that's the point I have removed half the mountain.

yours ever,

CHH

33 Replies

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  • I am glad it's working for you xx

    Medication is a fickle animal and I have had some odd reactions to My muscles and had to stop taking them. Even local anaesthetic played havoc on my heart. I am still under investigations to find out my route cause of the Nuerological condition/disease I have.

    On dosage somebody once said if you take half your dose it's life span in your system is for half its time at the same strength not half its strength for all of its time. It baffles me this theory, because would this be for all medication or just some and if so, which ones? I have the same dividing line on my heart tablets and I also split it, by doing this am I affecting the dosage or the time it spends in my system. Meds baffle me!?!?

  • Well this is the problem you need a Masters in Space travel to work it all out! Any answers I give would be based on assumptions never a good thing. I'll check it out properly! 😃

  • First, the principle of PwP testing their drug regimens seems such a right thing to do. Seeking the approval of a doctor every time you try a small change to your dosing seems like an adult asking permission to cross the road every time they want to go out. Of course, you need to be careful: not stopping completely for a long time; not overdosing. We see our doctors perhaps every 6 months. Surely, it is wrong to expect that even if they chance upon the optimal regimen in a typical 30 minute appointment, this will remain optimal until the next meeting.

    Second, regarding your example. Splitting your thee pills per day into six reduces the variation through the day, which is to be welcomed. It would be wrong though to assume that everyone would benefit. It depends on how much dopamine your brain is still producing, the size of your dopamine reservoirs; whether the smoother graph of plasma levodopa levels ever reaches a therapeutic threshold. That said, the only way the typical PwP can find these things out is to measure, test, measure, test ...

    John

  • Hence my very clearly expressed caution. But it would be wrong also not to share? C

  • I think splitting the pill is a good idea. I have done that with pain pills from the start of taking them after surgeries with no problems. I will certainly ask my MD specialist when I see her in June if she suggests increasing Sinemet--it seems like trying the half dose spread out would be better than an increase right away. Right now I have no problems or any off time but by June I don't know. I'll be more stressed by then because of a big vacation with our children and their children. I guess you would have to set a timer for your night time half pill though which would interfere with sleep. My last pill now is at 4 PM so my next would be 9PM etc. Another idea would be to just halve the 4 PM and 9PM then sleep until 6AM if possible --or take another half pill if awakened during the night. Your idea is something that would help us feel more in control I guess which is always good.

  • It's simply worth a thought! And that's what you're giving it! 😃

  • Very good to read of your improvement with med adjustment Colleen. I'm particularly glad for you and must admit a big bit relieved for me. Being slightly self focused I was beginning to worry about my fate should I have to stop Ropinerole when I read how badly it has affected your movement. Reading your meds regime changes things.

    Hope you get even better with a bit more adjustment.

  • Your care is very heartening and is sent back in an equal amount 😃

  • Ropinerole was bad for my husband. Only on it 2 weeks and the side effects were just so bad for him that I took him off. Gets very frustrating!!

  • What were his side effects? I've been prescribed a low dose but I'm leaving them in the drawer for now. I'm concerned about the side effects, but my GP and neuro gloss over these. I'm doing quite well and I'm not going to start them until I feel I need something else but forewarned is forearmed!

  • Have you tried the time release version of sinemet - Rytary?

  • I had a time release one at night for 30 days, made no difference. Odd isn't it, this truly is a personalised treatment condition!

    Thank you for your suggestion 😃

  • I tried Rytary--had TERRIBLE results! Terrible dyskinesia!

  • I also had dyskinesia with Rytary, so I cut back on the Rytary a bit and took a Sinemet with it. In my case, the dyskinesia was a reminder to me that I needed immediate meds. I love the Rytary as it stays in my system overnight - sleeping better.

  • I am grateful again for your post. I tried this but found it so difficult to manage meals and especially protein. The protein vs. levo-dopa race is always won by protein, regardless of the source: meat, plant or dairy in my body. "Half-ing" my pills would mean one every 90 minutes and, with leaving an hour window either side, I would be living on apples, crackers, and salad. May I ask if that is an issue for you and how you handle it?

  • I haven't found this. I rarely eat meat or fish as my husband is vegetarian. I don't have milk and very few eggs. Fortunately I love cooking so we have an interesting and delicious diet. 😃😃 thank you for taking time to post

  • Ah, there's the rub. I can cook but am finding it very hard to cook for one. I also am away from home 3 to 4 hours a day as my husband lives in a care facility and I go every meal time to make sure he eats. But just asking the question helps me to see the answer is for me to figure out. I am very good at the excuses...and get tired of having to be so disciplined all the time. I am working on shifting my thinking to gratitude for the strategies that help me manage the disease. I guess it is time to do some serious thinking and planning around diet.

    Thank you for your response. It has been the gentlest... and I know unintended... kick in the butt. I needed one.

  • Ive been breaking my pills in half for a long time. 93rd in 2012, I take singlet 25/100 7 pills a day. Its worked for me. It is very difficult with Ihe food thing, but somehow managed to do it. I try to to leave enough time for my body to metabolize the pill before eating, I'm going to see if I can get 12,5/50 pills, that will probably help.

  • I'm glad it seems to be working for you. I think your word of caution about making sure the tablet is scored is important. I would find it helpful if my medication is evenly distributed - especially to prevent dyskinesia when it peaks and the "off" effect when it is wearing off. I wonder if anyone is finding controlled release meds take care of that.

  • I have less "off" time with Rytary. Love it! Ask me more if interested.

  • I'm so pleased to hear of its beneficial effects!

  • CHH

    Im so happy you've noticed a significant improvement. This just made my day !

  • I tried splitting my Seinemet CR in half (and yes it has a score down the middle) but subsequently was told off by my consultant as apparently this removes the controlled release element of them! Instead he gave me a prescription of half Sinemet CR which I now take more frequently. Interestingly he also gave me some Madopar 62.5 mg to take for instant effect if I felt I was running out of energy after exercise. In fact he recommended I take it prior to exercise which I do if I remember.

  • did you every try rytary ER? it sounds like what you are doing is sort of an ER by taking small amounts frequently. we have had really good luck with rytary which being ER does the same thing.

  • Hi Colleen

    I am guilty of forgetting to take my meds. My consultant despairs of me!! I think I may try halving my main tablet for Parkinsons which I am supposed to take four times a day - sometimes I only remember the first two. I realise that I will have to monitor this closely. My Consultant has told me to get a pill box complete with timed reminder. I will give it a go and see if this method suits me.

    Sue

  • Oh Sue I used to be a hapless but now I depend on my meds. Funnily my new regime is easier to stick to! Oddly! Keep a couple of squares of chocolate with your pills ! Hahahaha won't forget then 😃

  • I phone?

  • Hi. Just discovered that my main tablet, Stalevo, does not have a line for it to be halved. So I have 'fallen at the first hurdle'. I feel sure that would help with my dopamine overload and my related movements. Back to the drawing board! The chocolate was a good idea although I am not supposed to indulge being a Diabetic type 2. Another area of contention, which I tend to ignore. Afraid I am a hopeless case.

    Sue

  • Not so hopeless ☺

  • That's a very interesting point you made about tablets with a line down the middle having an equal amount of the drug in each half. (And those without the line not necessarily having it equally distributed). For years we used to just snap my mum's tablets into two to make half a dose, and they didn't always have lines down the middle, it depended on the brand. That's really useful information.

  • If you are having problems with the dose, and want to halve, quarter it, or whatever, you can consider dissolving or dispersing the drug in a liquid. This has consequences, so you should be careful. I find Stalevo disperses in Vitamin C in about 2 hours. Once it is dispersed it is easy to pour it into as many small bottles as you wish. Three problems: the liquid doses only have a short shelf life - I allow only about 3 hours before pouring it away; the active ingredient may not dissolve; extended release pills may lose their effect if played around with, and may end up being fast release. My approach when faced with such issues is to test it on myself.

    John

  • What is the mg of your Carb/Levo? My husband takes 25-100mg l 5x daily.

    Does not help his PK now like it did when he started it 3x daily 2 years ago.

  • 3 X a day, now 6 X half a day 😃

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