Is Rytary really working better than Carbidopa/Levodopa?

[Gallowglass]

I’ve had PD for at least 5 years but it was only diagnosed 1 year ago. I started on Carbidopa/Levodopa 25/100, 3x a day and then went up to 4x a day. Primary troubling symptom is peripheral neuropathy and toe curling which causes balance issues and painful walking. Secondary symptoms are weakness, lightheadedness, hand curling into a claw, choking on saliva, constant dry cough. I’m exercising a lot, 1/2 hr each biking and walking per day plus rock steady boxing and farm work. Anyway the tie toe curling has been worsening interfering with sleep and activities so the doctor suggested I try Rytary. I’ve been on it for 8 days. Toe curling is even worse! While I’m not napping too much like I had been, I’m also not sleeping much which is awful. Should I ask to go back on C/L? Wait? Amputate feet!?

[Esperanto]

When I see neuropathy in combination with PD then I first think of an imbalance in vitamin B6. Both a deficiency and excess of B6 can cause a peripheral neuropathy PN. An excess is often due to the far too high dosages in the various supplements (such as B- complex and multi vitamins) that PWP like to take so eager. Deficiencies are rare with a good diet, except for PD, partly due to the interaction with carbidopa that causes a breakdown of your B6. B6 is very important for the process of dopamine production and the functioning of your C/L. Especially with a PN I would have your B6 level tested as soon as possible if you haven't done this yet!

I also have a combination of PD and PN and have succeeded through a different lifestyle (which you already do with exercices) and a limited (!) B6 supplementation (P5P), reduce my C/L to a tenth and halt my PN. Maybe it can help you.

[park_bear]

For me personally, Rytary was a fail as compared to generic carbidopa levodopa ER, So yes, switch back.

Important information about B6 here: healthunlocked.com/cure-par...

and here: healthunlocked.com/cure-par...

ER may be better than IR for toe curling: healthunlocked.com/cure-par...

[Jmellano in reply to park_bear]

Hi park_bear

R u taking c/l ER or c/l CR?

[park_bear in reply to Jmellano]

They are the same thing. CR, which stands for controlled release, is the suffix supplied to Sinemet to designate its time release version, Whereas ER, extended release, is the suffix applied to generic C/L for this purpose. As it happens I take the generic version.

[Jmellano in reply to park_bear]

Hi park bear I just went from rytary to c/l IR and CR. Felt horrible, I woke up and felt drunk, weak, super slow and not too clear mentally. My new regimen is .5 c / l IM and a c/l CR at 7am,11am,2pm, 6pm and before bed 2 c/l CR. I was on 2 rytary145 at 7am,11am,2pm at 6pm, a rytary 145 and a rytary95 just before bed. Any comments? Is c / l ER even sold anymore? Or perhaps we need to wait for generic rytary?

[park_bear in reply to Jmellano]

c / l ER is what I take.

Did you switch away from Rytary due to cost? The only thing I can recommend is to stick with what works if possible.

[Jmellano in reply to park_bear]

so there is a c/ l ER in addition to CR and IR. ? Yes,cost was the reason, in 2024, pricing is changing and Previously I had a grant from pan foundation or the assistance fund. No longer eligible. For grant

[park_bear in reply to Jmellano]

Per above comment, C/L ER generic is same as Sinemet CR

[rleedc]

I would try KT tape for the toe curling or foot cramps. Just Google KT tape for Parkinson’s and YouTube. You will find many videos with instructions as to how to apply the tape, etc..

[Gallowglass]

can’t wait to try it! Thanks!

[akgirlsrock]

Try taking half immediate release Carbidopa/levodopa with Rytary, I do 1 25/100 and 1 145 mg Rytary, the one 25/100 will last for one and half hours so I'll take another to nock my tremors down and the Rytary every 4 hours. I had Pd since 2012, everyone reactions are different. If you get Dysknesia then you've taken to much, take less or spread pills out. It's been trial and error for me. Best wishes

[LauraYu]

I had toe curling in the past , especially in the morning, the big toe curls up, which made my walking impossible . Someone online mentioned that this is due to too much sinemet. So I reduced the dosage, the toe curling disappeared. Hope this helps! Laura

[Gallowglass]

thanks!