Noticing Deterioration_advice sought

Folk…firstly my best wishes to all. Secondly, I wonder if there is any wise feedback that I might get. I am 5 years into diagnosed Parkinsons. I take 6-7 Sinemet plus 25/100mg tablets ,spread out during the day, and episodically (though its ment to be daily !) take a Rasagaline pill. My first question, is this…does anyone confidentally know that, for them, Rasagaline is helpful…I rather feel I see no impact, which is, I understand is a common feedback.
More important to me, is the fact that, only in the last week I have witnessed, by 8pm (3 hrs after last tablet of the day ) that I get very pronounced dyskinesia…A trembling of arms and legs…more prominent to my left side . Now I have heard that dyskinesia is a side effect of simply us taking levidopa…, but…if that’s the case, then why am i getting it when my body is actually very low on levidopa.? I have been prescribed Madopar for any required bright, early start to each day…but i hardly ever take one, as I can usually simply take Sinemet pills, given that I no longer work… I have been forced into early retirement by virtue of market downturn, and as a product of my disease advancement.
I welcome any feedback, as…I feel the evening dyskinesia to be a most unwelcome recent affliction.

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Hi @William,

Welcome back to the forum, you may find the following resources useful in answering your questions:

You could also ring our helpline and ask to speak to one of our nurses to discuss the issues you’re having. Please give our helpline a call on 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm (Closed Sundays/bank holidays). Or email us at [email protected]

Many thanks,

Tash - Moderation Team

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I’ve also been suffering from dyskinesia for a few months now, but in my case it does appear to be related to peak dose, rather then wearing off. I sought advice from my local Parkinson’s nurse and my neurologist and it seems to me you probably need to do the same. Because of the coronavirus lockdown it is a challenge to get medical advice at the moment, but it is still available.

Thanks Jane…In truth, I suspect every topic that people raise on this forum can readily be raised with a parkinson’s nurse, and…yes…they are excellent refuges, with great pearls of wisdom. One thing that I notice readily inreases my dyskinesia…is protein, so I am definitely eating differently nowadays. Thanks for your comment :slight_smile:

Hi William, I get the same symptoms and I am only on a dopamine agonist (not levedopa). I tried Rasagaline after being told that it does a sort of hoovering up of spare dopamine in the brain. Didn’t notice any improvement at all. You’ve got to try it and then decide whether its of any use to you. But do take advice on how to stop any of these drugs. Good luck