Safinamide. Does anyone use this? - Cure Parkinson's

Cure Parkinson's

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Safinamide. Does anyone use this?

goldiewan profile image
5 Replies

I am about to trial Safinamide. I’m in the uk and this is via the NHS. Does anyone have direct experience with this? I will give an update later!

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goldiewan profile image
goldiewan
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5 Replies
Aussiebeanie profile image
Aussiebeanie

Yes. I've been taking it for about 18 months and it has reduced my 'off' times.

goldiewan profile image
goldiewan in reply to Aussiebeanie

Thanks!

pearlette profile image
pearlette

I trialled it recently. By Day 4 I was struggling. By Day 5 I could not walk from the station to my clinic (a 8 minute walk took 20 minutes) due to severe rigidity of lower limbs starting at the top of my lower limb (glutes).

I thik the reason for that was not the drug itself but the faxt that I did not wean down my rasagiline for a week.

The reason I am givig you this negative report is to emphasise that it is worth checking with your specialist pharmacist attached to your movement disorder neurologist.

I am aso UK based. Normally I check the literature myself but this time I did not.

goldiewan profile image
goldiewan in reply to pearlette

Thanks for the report. Makes sense. In my case I’ve only been using sinemet, but can’t tolerate a standard dose.

pearlette profile image
pearlette in reply to goldiewan

Good luck.

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