Safinamide

[Tomkins]

hello

I was diagnosed with PD in Nov 2019 and in May 2020 my right hand tremor was getting hard to tolerate as its amplitude had increased and it moved to include my left leg and chin.

In May 2020, somewhat anxiously, I started on 1 yellow pill (Sinemet plus) at 8am, 1pm, and 6pm. Within 4-8 weeks my right hand tremor had completely gone. In November 2020 I reported to the doc that all was going very well.

However, since January 2021 (ie only about 7 months on this med regime) I have been having wearing off symptoms. It took us some time to diagnose these as oro mandibular (facial) dystonia. That said I am still tremor free and anyone who meets me says they can't believe I have PD I look so well.

However behind the scenes when my meds are wearing off the relentless involuntary thrusting of my tongue to my teeth is uncomfortable and can lead to painful tenderness and rawness in my tongue and cheeks. In addition, it can affect my getting to and staying sleep which in turn can make me less functional than I'd wish the following day.

To address the wearing off since Dec 2021 I increased my Sinemet plus to one and a half yellow pills (8am, 12pm, 5pm) and 1 yellow at 10.30. Most recently we have replaced the 10.30pm 1 yellow pill Sinemet plus with Madopar (dispersible) and 'slow release half sinemet' (10.30pm). Plus over the last 4-6 weeks I have introduced Rasagaline 1mg.

Unfortunately I continue to experience wearing off - such that now my meds begin to wear off about 3 hours after my last dose of Sinemet plus.

I have a few options:

1) trial a course of botox to see if this might help (on the plus side I would not increase my medication).

2) trial safinamide (Xadago) - from what I've read this seems like a very promising option - has anyone had any experience with it?

3) trial a dopamine agonist (eg ropinerole) - am less keen on this course of action

has anyone else had any experience that might help me better understand what options are the most likely to help.

I have to admit to feeling somewhat defeated by it all, even though I am mostly cheerful and positive by nature.

thank you for reading all of this.

[JeanieBeanie]

I see you are in the UK. There is Opicapone. You take 1 a day for bed. My husband tried it but it caused complications getting his meds and his DBS in unison. Also Stalevo and Entacapone. Opicapone is the new version.

[MN1066]

Have you considered red light therapy and also trying mucuna extract for longer periods "on"?