Coming off Levadopa

Hi everyone I’ve come off levadopa with the help of my nurse because the neurologist and I want to see if it improves my head drop. I’ve been right off it for 5 days and it’s quite tough but I’m managing. About how long should I be off it to see if there’s an improvement? I’m scared all will be for nothing. I think I see a small improvement but I’m not sure. Neurologist’s nurse says I should be off it for at least 2 weeks. Does anyone have any experience? Thank you!

Hi @Snowy,

I’m sorry to see that no one from the community has stopped by yet to share their experiences with you - we’ve certainly had a number of members come off levodopa, whether short or long term. Hopefully some come by soon!

Coming off of any Parkinson’s medication can be tough, but the insights can often be rewarding. I can understand how difficult it must be for you, and why you would be scared that it’s all for not. You are being incredibly strong and I’m sure your neurologist really appreciates it.

Regarding how long you should be off the levodopa, this truly is a question only your nurse and neurologist can answer. If the nurse has stated 2 weeks then that may indeed be as long as you will need to be off the drug. The best thing is to be open with them about how you are feeling, and monitor your head drop as much as you can.

If you ever have more questions or concerns about this - or anything Parkinson’s related for that matter - don’t hesitate to contact our helpline on 0808 800 0303. Our advisers can listen, answer questions, or offer suggestions, whatever you may need.

Best wishes,
Forum Moderation Team

Thank you! It’s a tough few weeks!