Levodopa causing dystonia

[BPW1]

I was diagnosed Dec 2020 with PD. I started out with motor function problems but no tremor on my right side. My neurologist started me on C/L 25/100 3 tablets a day. Motor junction greatly improved but started getting dystonia in my right foot. I tried therapy, botox but my neurologist said it was wearing off of my C/L so he increased my dosage so as of today I take three 25/100 four times a day. Motor function greatly improved but dystonia remained the same and painful to were it was hard to walk. I am 53 as of today. I noticed in the morning my dystonia goes away but returns shortly after my first dose. Over this Christmas break I went cold Turkey off my meds and my dystonia has now disappeared since December 26 but motor function has decreased again. Looking for thoughts on my situation because my neurologist only ever increased my medication. Has anyone suffered from my situation or have any advice.

Thanks

[park_bear]

Sadly this is all too common and can be devastating if the patient does not realize the source of the problem. More detail here: healthunlocked.com/cure-par...

Personally I limit my levodopa dosage for this reason.

[Parkinsunny]

damn , So sorry to hear this. No advice. but sending a hug your way.

[LAJ12345]

Try taking smaller doses closer together. My husband uses 50/12.5 3 hourly with a half dose in between for the first 3 doses of the day.

[Pdotg]

I suffer the same and have tried the cold turkey too. I have no useful advice, but will be watching all replies with interest.

[gingerj]

Hi BPW1About five years ago i posted the same question. Have a read through the replies you might glean some information.

healthunlocked.com/cure-par...

[BPW1 in reply to gingerj]

what did you finally come up with? Thank you for your response.

[gingerj in reply to BPW1]

Basically I needed more medication to bring my dopamine levels higher than what I would come to describe as my dystonia level, and keep it there as long as possible throughout the day. I increased my dose and reduced the time between medication. Then added entacapone. Over the last 5 years, the dose has increased to me now taking stalevo every 1.5 to 2 hours. In the last couple of years, the addition of meds has caused some dyskinesia so I ended up on Amantadine and as of tomorrow DBS.

I would suggest a subtle increase. Try an additional dose and reduce the time between doses.

Good luck

[Nuthatcher]

I have some similar conditions and my PD Doc prescribed Pramipexole, Amantadine and I also get Botox every 3 months. I was diagnosed in Fall of 2019, am 68years old and take Rytary 48.75 mg/195 mg four times a day. I am pretty much controlled with this but do occasionally still get dystonia and dyskinesia. My doctor wants me to consider DBS for the future. I am afraid of that though.

[eschneid]

It never worked for me as the IR became my friend, but might be worth a try with extended release levadopa types, Constant (new), Rytary or 50-200 c/l continuous release. More controlled entry might help your dystonia as the IR could be "too much, too fast."

[BeedieBird]

I concur on the extended release c/l or rytary. Dystonia for me much worse on immediate release. I'm on Rytary now 145mg 3x a day. Plus I have 95mg as a filler for stress days, exercise or if I wake up at night and can't go back to sleep.