I was diagnosed with PD 6 years ago. I'm currently taking 6 Stalevo 100mg each day at 6am, 8am, 10am, 1pm, 4pm, and 6pm. I also take Resageline 1mg.Over the last 18 months I have seen an increase in Dyskinesia, mainly later in the day and usually worse as the meds wear off.
My Neurologist suggests Amantadine twice a day, but im concerned about the potential side effects.
Would moving to or adding Controlled release Sinemet be a better starting point?
Is there any other ways to reduce Dyskinesia?
Thanks for any advice
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gingerj
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I have been taking Amantadine for 3 years. It was the first drug I started with, and have had no side effects from it. I have read that it helps stop dyskinesias.
As a starting point for your discussion with your doctor, I've had my app draw a graph that approximates your present situation. I stress "approximates": it is just a model of reality, the real world is much more complicated. For instance, the app does not taken into account your diet.
The six saw-tooth lines show the individual contributions of the six Stalevo doses. The black line shows the total value at any time. The green horizontal line shows the "on"/"off" threshold. The red horizontal line shows the levodopa induced dyskinesia threshold. There is a place in the data entry where you can change these to best match your experience. You can also add amantadine.
It's not clear to me that you have LID or another form of dyskinesia. You mention "as the meds wear off".
Well done, johntPM. Your work shows that the meds are in fact not wearing off but peaking a bit after 1900 hrs.
In response to question from GingerJ - although I often favor controlled-release, with this medication schedule controlled-release would make things worse rather than better due to the "stacking" effect over time. Instead, if you are able to delay your 6 PM dose until 7 PM that may help.
I agree. Based on the graph you might want to try halving the last dose or taking it later as Bear says, but this graph doesn’t take into account the natural dopamine cycle which peaks at midnight and is at a low point at midday. If you are reasonably mobile first thing in the morning for a while before taking your fist meds it might be that you don’t even need that last one of the day if you are still making some of your own. So taking it later might not help as the levels are rising naturally in the evening . It’s possibly that effect that is making you feel worse rather than not having enough.
I would avoid the long life one, it literally put my husband through hell, completely disabling him, and gave him constipation, insomnia, choking in the throat, and sundowning plus made him want to kill himself every night so I had to lock him in, which all reversed after a few days of swapping back to the instant release.
I think you're right, however I'll firstly try bringing the 4pm dose back to 3:30pm to keep above the on/off threshold and see if this prevents the high peak. Thanks for your analysis.
Assuming it is LID, would it be possible to take a low dose of B6(10 mg) at or slightly after the third dose of Stalevo to slightly reduce those peaks above the D threshold?
Even if B6 does reduce C/L levels, I would like to see much more evidence that the "negative levodopa" technique works in simpler cases before suggesting its use in complex problems such as this. Please remember that the model is just that: it shares some features with reality, but it isn't reality.
I started Amantadine a few weeks ago. I take one a day in the AM. It made things better starting a week in and the day goes really smoothly now. Much better. I am on the same CL as you - different schedule.
Thanks, ive used your app results in the past and my neurologist has been impressed with the graphs as I discuss my medication changes. The green line does fit my on/off threshold. I find im mostly on from 8am till 3:30pm. Then off a bit till my 4pm dose. The reason I take my next dose at 5.30 to 6pm is that I eat my main meal at 6.30pm and if I take stalevo after eating it doesn't work and I feel terrible all night.I didn't realise that amantadine was in the app. Thanks i'll have a look.
Sorry to dredge an old post, could the Amantadine be causing stacking? Each 100mg is equivalent to 16mg L/D, which for me using the app would mean delaying my next dose of Sinemet by 20-25mins. You only get that benefit after 2hrs and if the pill gets caught up with food it could make that boost unpredictable?
"Each 100mg [of amantadine] is equivalent to 16mg L/D". It is equivalent in the sense that the peak concentration of levodopa equivalent is only about one sixth of that of levodopa (16/100). You can see this in the CMAX column. But in terms of area under the curve, AUC, 100 mg amantadine is the same as 100 mg of levodopa. The reason for this is that the effect of amantadine is more spread out. The half life of amantadine is 847 minutes as compared to 81 minutes for levodopa. You can see this in the THALF column.
I don't know of any work which quantifies the interaction of food and amantadine.
As a general point, the model is not perfect. And the data is not exact. At the very least, the curves are likely to vary from person to person.
A google search will suggest that B6 and iron in viable dosing amounts can reduce levodopa effectiveness. They would require dose testing to see how much it will take to surpass the anti B6 effect of Carbidopa. Here is a basic article that mentions B6 as a levodopa effectiveness reducer :
' Vitamin B6 supplementation above 5–10 mg per day reduces the effectiveness of levodopa. However, combining levodopa with carbidopa prevents this adverse effect, so vitamin B6 supplements may safely be taken with Sinemet® (carbidopa/levodopa). '
' Test tube, animal, and preliminary human studies suggest that carbidopa may cause depletion of vitamin B6. However, the use of carbidopa with levodopa reduces the vitamin B6-depleting effects of levodopa. More research is needed to determine whether vitamin B6 supplementation is advisable when taking carbidopa. '
I was asking Johnt if this is a possibility to try and reduce the D threshold intrusions.
After almost 50 years commercial availability of C/L medication, it is incomprehensible that the effect of B6 supplementation on levodopa's function immediately after intake, but also in the short and long term, has still not been sufficiently researched. After all, the use of B6 as a levodopa inhibitor can backfire because B6 also provides the production of dopamine. The direct interaction between carbidopa and B6 is too complex to experiment with. By keeping the minimum interval of 2 hours between C/L and B6 intake suggested on HU more often, you avoid this risk. B6 supplementation will probably be necessary for most of us due to the breakdown of B6 by the carbidopa component. For that, choose the safe P5P form and again, have your B6 levels tested once to know if there is indeed a deficiency. Unfortunately, I usually get the results only after several weeks which does mean that the effect of any B6 supplementation is only o see for the longer term. In my case, the B6 correction has meant that I only need 1/3 of my C/L with much better function, allowing me to regain something of my "old" life. If perhaps an adjustment of your dosage schedule is possible Gingerj then that might also help with your dyskinesia problems. Please let us know! 🍀
"combining levodopa with carbidopa prevents this adverse effect, so vitamin B6 supplements may safely be taken with Sinemet® (carbidopa/levodopa). "
Is wrong. B6 will form insoluble complex with carbidopa thereby preventing it from working. The net effect will be to reduce circulating levodopa. Reference:
"Pyridoxal 5′-phosphate (PLP), an active form of vitamin B6 (pyridoxine), is involved in the decarboxylation of levodopa to dopamine; carbidopa, which is combined with levodopa to reduce peripheral levodopa conversion and minimize peripheral dopamine side effects, binds irreversibly with PLP."
Also I forgot to mention, I m not a doctor but I come across a article about vitamin B1, other name is thiamin, I suggest you this take 1 to 3 times 100mg vitamin b1.My experiment vitamin b1 so effective so far f, from 8 x 100 mg stalevo gone down to 4 times a day. Night time peacefully sleep experience it still I m. Shuffling considerably 70 percentage gone, just stars after regular basis taking 1 x 100mg b1 vitamin a day 6 weeks. For it is excellent so far, try out
Sorry I didn't reply earlier. I've had problems with my phone. All sorted. I've been taking amantadine now for 6 months. Twice a day. The dyskinesia has improved but I still have it a bit later in the day.
Regarding DBS I still have my psychologist meeting at the end of this month, then I guess its a wait and see.
I've done the off levadopa assessment and two lots of psychological assessments. From your experience is there any more hoops I need to jump through?
Not that I know if Ginge. They’re essentially trying to rule out dementia and depression both of which can get worse with DBS. Good luck and keep in touch with any progress eh?
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