Levodopa not helping

[goldengrove]

I'm wondering whether any others have had this experience and what they did about it. My HwP was diagnosed 7 years ago at age 62 - mild right-sided tremor, absent arm swing, problems with handwriting - and he started rasagiline about 3 years ago which he continues to take. Tremor became marked about 18 months ago and he tried a dopamine agonist but it made him terribly sleepy so then he was put on Madopar 100/25 twice daily but he has never experienced any diminution in the tremor or improvement in handwriting after a dose and doesn't know if it's worth continuing. Upping the dose would be another possibility but, while he is a bit stiff, he doesn't yet have too much difficulty apart from the embarrassing tremor and the handwriting, and he still works full-time in a demanding role. He definitely has PD but the "gold standard" so far appears to do nothing for his symptoms.

[skiier1]

it took me about a month to start working

[scotta]

For some people, you have to wait a bit longer than the "usual" 30 minute time after taking levodopa to get past the protein effect. If you don't wait long enough before eating a protein meal, it can behave like a dose failure. In my case, it takes 45 minutes and some people wait a full hour.

[1LittleWillow in reply to scotta]

I'm "some people" lol. I have to wait 2 hours if there's meat or dairy or a really big meal. If I don't wait, my mucuna just stops working.

[Ob6842 in reply to 1LittleWillow]

What brand of mucuna/dose do you take? I’ve read that it’s common to have heavy metals in it. ( I’ve purchased the NOW brand mucuna, but haven’t tried it yet). How does it compare to C/L? I’m C/L reluctant, (dyskinesia ) and scared of what I’ve read, and heard about mucuna from my MDS!

[1LittleWillow in reply to Ob6842]

I take Barlowe's brand Indian brown. I do occasionally get mild dyskinesia, but it isn't a big problem (yet). The reason I decided to try mucuna was that I had pretty severe side effects from Sinemet. I couldn't tolerate it. Mucuna by itself didn't work very well for me (I had to take a lot to get any response), but my neurologist prescribed carbidopa to take along with it, and it works really well now.

[1LittleWillow in reply to Ob6842]

I forgot to answer your question regarding mucuna dose. I haven't been very scientific about my dosing. I was buying the bagged powder, measuring it with very tiny measuring spoons, and mixing it in applesauce to take it. That became too much of a hassle, so I started buying the capsules (650 mg, 40% L-dopa), but the amount in the capsule is too much, so I open it and dump out about half. I just eyeball it and don't measure it in any way. It's kind of a backwards way of doing it, but it works for me. I usually only take one dose per day, sometimes two if I have lots of stuff to do.

[heartinmotion]

try Amantadine

[nop9 in reply to heartinmotion]

me too, amantadin helped, ldopa makes me just sleepy, a bit less tremor, but not faster

[heartinmotion]

Exercise

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