Spanning an octave - Sinemet does it again

[WinnieThePoo]

This is bound to be premature. I can feel the regret coming on. Just a bit of patience Winnie.

Guess who's on Sinemet? Not as I wanted - but maybe my neuro knows more than I gave him credit for. I have switched back to the guy who diagnosed me, and is (relatively) just up the road.

I explained that I was on Pramipexole (Sifrol), and doing well enough, although a tad undermedicated and so supplementing with 120mg ldopa from Macuna TDS. Well, that was the intention. More often than not I'd forget one or two of the Macuna sessions. However, I wanted to explore the idea that Sifrol was causing an irritating cough

So - I wanted to up the overall medication, and phase out the Sifrol and phase in Sinemet. If it made no difference to the cough, or anything else, then phase back in the Sifrol. A one a day tablet is very convenient. Maybe up the dose of Sifrol and dump the Sinemet. I'm only on 1mg a day Extended Release.

My Dr examined me, commented how well I was doing, explained that they preferred agonists in the under 70's and Sinemet for the over 70's, but that every PD case was unique, and it was a question of juggling and experimenting to find the right magic mix for each individual patient.

He prescribed 0.52mg Pramipexole morning and evening (ie same dose, but split into 2 sessions a day), and Sinemet 10/100 morning and lunchtime. I wasn't paying attention, or I'd have asked him why not Sinemet 25/100 TDS.

I explained to my wife, how in effect he had changed nothing, and just replaced Macuna with synthetic ldopa. But no dose increase, and I needed to go back and see him to get more. Einsteins definition of stupidity - to keep doing the same thing and expect a different outcome.

Wrong! This morning I am touch typing - but not just managing to use all the fingers of my left hand - I am lightening quick and error free

And I can play bass lines on the piano - and my little hands can even span an octave . Any minute now I'm going to pick up a guitar and see if I can play that again.

I know the disease will progress. I know there will come a point where these therapies won't be enough.

But right now - awesome!

Carpe Diem

[Smokeypurple]

Fab news WTP - and very interesting... Keep us posted.

[Hidden]

Living your best life!

[pmmargo]

Be careful! I too had miraculous reaction to the pramipexole. It fixed my walking badly in the direction I was looking and restored my taste sensation when everything tasted like salt. But in the long term it caused ankle swelling and sleepiness (including narcolepsy) and compulsions (buying, eating, sexual). It was very difficult to get off the pramipexole too. It is called Mirapex for a reason. Mira as in miraculous. Keep a close watch.

[WinnieThePoo in reply to pmmargo]

Thanks for the warning Paul.

I've been on Sifrol for well over a year at 1.05mg once a day, and it did make me tired, but the red lights seem to have fixed that. What's changed is that it is now 0.52mg twice a day (the dose has been spread out a bit). And a tiny dose of low Carbidopa Sinemet has been added, instead of my Macuna.

But not enough Sinemet to experiment with cutting back (out?) the Sifrol this time. I have previously stopped from 1.05mg completely, cold turkey, to the horror of 2 neurologists, with absolutely no ill effects at all. That's one of those "don't try that at home, children" things - but I was fine

Clearly the tiny bit of Carbidopa is having more effect than I imagined, since apart from that I'm on the same dose of Sifrol and the same amount of ldopa. I think , even though its slow release, one a day, spacing out the Sifrol may have contributed too

[MBAnderson]

Living in the present? Hmmm. Sounds intriguing.

(Good for you.)

[ddmagee1]

Enjoy your ability to do many things, with the help of medicine, while you can, is my approach!

[Zella23]

Excellent news. Sometimes a small amount of meds taken can make a difference. Sounds like your Neuro is is a sensible guy. Your red light hat also must help too. My husband still using his and no change in meds at his app on Monday. Neuro pleased and said your PD must be a mild type!

[eschneid]

Pooh,It's called Quality of Life. Even has its own initials, QOL and you my friend deserve to enjoy a great one as well for as long as you can.

[Wonky-Bride]

Absolutely brilliant Winnie - you get out there and party like a rock star for the duration!

[LindaP50]

Enjoy yourself with your newfound fingers! As you say "Awesome!"