Really interested in opinions here - especially from the more experienced and time-served 'warriors'. Diagnosed 2 years ago after about 18 months of tests to establish why I had been experiencing arm stiffness, loss of some finger dexterity and foot/toe curling - all on my right hand side. A SPECT/DAT scan result came back reporting a 'gross presynaptic dopaminergic deficit' - and Idiopathic PD was diagnosed. I was just shy of 49 (coming up for 51 now), and luckily still very active.
I was put onto Sinimet 25/100mg (C/L) three times a day. Did I notice a difference when I started these? I'm not sure - if there was a difference it wasn't much, though to be fair my symptoms were quite subtle /minimal.
2 years on, and I've gradually built a regime to optimise my health and give myself the best shot of keeping PD's impact to a minimum. When it's something this important, I reckon throwing the kitchen sink at it is the only way. Any nuggets of wisdom I've picked up from researching books, podcasts, forums like this (thanks people!👏), I've looked to implement, especially if there appears to be little in the way of risks/downsides.
My regime includes yoga, boxing, running, cycling, meditation, breath work, cold showers, diet (no dairy, less sugar, more fresh veg, especially peppers & berries), High Dose Vitamin B1, supplements (B Complex, Magnesium Glycinate, Vit D), playing my guitar and singing.
I count my blessings that all these things are available to me, and mostly I have to say, I feel great - mentally better than I've felt in years (more energy, less brain fog, less anxiety). 6 monthly Neuro nurse appointments have been showing improvements in reactions and touch tests.
Which brings me to my point.....given the often-stated link between long term Levodopa use and dyskinesia, and the lack of impact these meds may have had for me, I have been giving some serious thought to reducing C/L dose, then if no impact, considering eliminating. I do not experience on/off periods and if I mistakenly miss my 3rd tablet one day I notice no difference.
So I guess my questions are..
1. Is there a definite link between Levodopa use and dyskenesia?
2. Is this only at higher doses or after a longer period of use, or both?
3. Should I (carefully & with Doc's support) reduce C/L intake and monitor?
4. Or should I go for 'if it's not broke, don't fix it' strategy?
Maybe the meds are doing more than I give them credit for. I just feel it's worth exploring. Any feedback most welcome.
Best wishes,
Andy
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This problem is at its worst with high levels of levodopa intake and low intake of protein. Less of an issue with low levodopa and normal diet. In any case, levodopa is strictly for symptom relief. If it makes no difference then it should not be taken. Do not quit all at once cold turkey but taper your dosage gradually.
Parkinson's is a wake-up call to adopt healthy habits and you have done well. Good work and carry on. 🙂
I agree with most of this. The 2nd study cited is not typical for you PB. An in-vitro study with a fairly weak conclusion.
"These data suggest that the accumulation of l-DOPA-containing proteins in vulnerable cells might negatively impact on cell function." (my emphsasis). And all of this based on test-tubes. And 12 years old. In the absence of anything in-vitro subsequently, I wouldn't rush to draw definitive conclusions.
As a levodopa user I would love to be able to disregard this study but not about to do so. They were guarded in their conclusions but they clearly found levodopa incorporated in proteins in the brains of levodopa treated patients where there should have been tyrosine. This cannot be good.
Should any concern be given to the differences in diet between Ghanaians, which is mostly starch and Italians which is the Mediterranean diet and therefore differences in their microbiota cause differences in absorption of levodopa should be taken into account in the sub-Saharan African study?
You'll probably get as many different answers as there are members on this forum. For what little its worth
1 - Arguments for both, but no good evidence duration of levadopa causes dyskenesia and plenty of good evidence that duration of the disease causes dyskenesia. Of course, for most people duration of the disease runs pure parallel to duration of taking medication, so its easy to confuse the 2.
2 - See 1! Note the dose will often increase as the disease progresses
3 - Why not? Maybe you started before you need to. There is precious little point taking C/L if you're not getting an observable benefit from it
4 - Personally, I don't go in for that and choose to experiment , usually with the support of my doctors. I have a very "Pliable" GP - and often I get put on the naughty stool by my main neurologist .
You sound like you are doing really well with your regimen and while it is working well, I would be tempted to lessen the dose if you’re not getting any benefit at the moment from it.
It’s really hard to know if changing or cutting down on levadopa will prevent dyskinesia in a few years time or ever.
In my experience with my husband it began to come on after 4 years of C/L use and he was only taking 4 x100/25 a day. Medication was adjusted and changed and added to. He’s been dx about 8 years.
He now takes less C/L but with added meds and C/L definitely caused the dyskinesias in his case. Our Neurologist has been working with us to try by adjusting and slowly adding low doses of different meds to try and lessen them. The link is clearly there with meds in his case. If he lowers them more stiffness and little dyskinesias if he increases them it appears within an hour of med taking. We have tried everything to try and get the balance right. Still a work in progress!
Thanks yes he’s very well at the moment in between meds adjusting. Still walks between 2 - 4 miles a day, back problems limit some exercises but still perseveres. He’s a red light hat fan and now has Cue1 which has helped the walking pace. Loves the brain training app on the computer!
Neuro amazed he still only takes low meds after having first symptoms 11 years ago. It’s a pity they give him issues more than PD ones!
I think you mean dx and it just means diagnosed. My husbands first red light hat was from the mens shed in Tasmania, since then updated to the Coronet bought from wellred. The wellred company I think was set up by Dr Catherine Hamilton. A few people have made their own and have written about it here. If you put Red lights in the search above you will get many past posts on it here.
Pleased to hear that it’s helping lower your levadopa. This seems to be happening with the addition of the Neupro patch with my husband. Was down to 2 and a half Madopar today. He’s only used it for 2 weeks so early days yet.
We have many Neurologists and researchers at the European Parkinson Therapy Centre, I can only summarise what they say
1. Is there a definite link between Levodopa use and dyskenesia? NO, not in early stages
2. Is this only at higher doses or after a longer period of use, or both? BOTH But we are talking 14 years plus and dosages of over 1000mg per day (too much)
3. Should I (carefully & with Doc's support) reduce C/L intake and monitor? YES. BUt do it under Dcctor supervision. OR more radical is DBS: Remember DBS will normally half or eliminate C/L.
4. Or should I go for 'if it's not broke, don't fix it' strategy? Levopdopa is a doubled edged sword, essential but too much can create Dyskenesia, brain fog, and periferal Neuropathic damage leading to a high level of pain.
WARNING: Everybody is different. This is a general guideline
i would most definitely go with the plan to titrate down super slowly. I did it myself, asking all the same questions you are, and got down from 3 pills per day to one. The honeymoon at one pill didn’t last long and my tremor came back with a vengeance. I titrated up slowly and settled at 2 c/l tabs where I am most content. Lots of good luck.
You are doing very well, Andy. Two books by people who have recovered from Parkinson's: 'Fighting Parkinson's and Winning' by Howard Shifke and 'Rethinking Parkinson's' by John Coleman. Neither took any C/L.
Thank you Meg024 for these recommendations. I've read the Howard Shifke book - which gave me the idea to do daily yoga with specific 'cleansing' poses, and also look at my diet. Haven't read the John Coleman one - but think I will now! Ta! Hope you are well.
Every morning I take Rytary, memantine, baby aspirin, coQ10, Vitamin D and Duloxetine. Rytary is three times daily. Memantine is twice daily. Then at bedtime I take Motegrity, omeprazone, a statin and melatonin. To help me remember I mark it down on a calendar. Yes, I'm old and prefer paper to using a phone. I know when the rytary is wearing off because I develop double vision. Technically it's lack of convergence; The two eyes no longer focus together and send two images to my brain. A mild annoyance easily remedied by covering one eye. Or taking a rytary.
Hey Tex, good to hear from you! Reckon guitar playing is an excellent form of therapy - dexterity, brain engaged, and soul soothed (well depends how your playing is I suppose😜), Definitely going to steadily reduce the meds and keep observing. My experience to far and gut feeling is that my other changes (Specific exercise, nutrition, B1, meditation, etc) have had a bigger effect than the Sinimet. I may be proved wrong and that's fine, but I'm gonna give it a go. Good luck and take care bro!
Hi Andy I am feeling similar to you where I am thinking of slowly titrating back on levadopa. Diagnosed in Dec 22 and taking levadopa 2x a day 100/25 and Rasagaline since May. I’ve increased my exercise; Cardio 5x a week; strength training 2-3x and try to incorporate yoga as well. Recently incorporated Wm Hof Breathing/cold showers daily. Sauna 1x a week. I am feeling a lot better and keep taking the morning levadopa later and later without noticing much change.
Did you cut back/eliminate the levadopa? How did it go? Thank you
Hi Shack. Stepped down gradually (from 3 x 100mg/day) and have settled at 1-2 x 100mg. Effect of Sinimet for me has always been subtle and still is. I think I’m probably hedging my bets & keeping that small background level of dopamine. 1 x 100 is sometimes enough. If I feel a bit stiff I pop a second. Sorry…probably not helped you much there🤣
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