Hello all!
Had an appointment this morning with my Syracuse Dr. and NPP and it was very productive!
The NPP told me to come in unmedicated - Lmaoooo - THIS was hilarious BC I couldn’t sit at all, and I paced pretty much the whole time. When I did sit down, the tremors and shakes were hysterical to say the least. At one point I was doing squats on the floor BC I had to keep moving! Lol Needless to say a fun time was had by all!
The first observation was my hyperness and my energy level! She said that although not rare, it’s not usual that a PD patient has as much energy as I do.
The NPP watched me walk, and she was impressed with my gait, walk, arm swing, body strength, and sturdiness! So I was happy with that.
The Dr. did the same and was equally impressed
He did say the biggest issue currently is the tremor and he did see Bradykinesia as well. Telling him about the transit time for L/C he suggested and prescribed NEUPRO. I’m a little nervous about it given some of the side effects, but he said that he thinks my tremor is too out of control - it isn’t sure as to why.
NOW onto getting approved by insurance lol, it’s almost $950 WITHOUT it so let the preapproval process begin!
Thoughts?
Additionally, I’m still going to Rochester as they are a COE and Upstate in Syracuse is not.
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What dosage are you on?
I just started it this month and I'd be happy to answer any questions for you.
Just by your description, I really hope you're taking some form of levodopa also.
Dr told me no to taking L/C as well. He’s starting me at 2 mg. Thoughts?
Any weight gain, water retention, odd SE?
2mg is a starter dose. It's unlikely to do anything unless you're very sensitive to drugs. I escalated up to 6mg which i started today. No side effects, bar it being a bit itchy sometimes
Ok. My body reacts pretty quickly so we shall see!
He said he’s worried about the dyskinesia if I take LC with it.
i'm not a doctor and this is not medical advice, but if your tremors are as bad as you state a dopamine agonist like neupro is not going to have much effect on your tremor. it sounds like you need l'dopa. Neupro is generally used for early stage patients where the symptoms are very mild or as an add-on to l'dopa. I'm taking it as an add-on in the hope it'll improve my on-time without the need to increase my l'dopa.
Yea I figured. He said didn’t want me to get dyskinesia so I guess we shall see. The odd part is that after about an hour of shaking in the office with no medication this morning I started to calm down and my blood sugar began to raise a little bit and I wasn’t nearly as shaky and I wasn’t nearly as tremory. Now mind you I’ve had every test for diabetes and blood sugar so that’s clearly not it. And of course when I got home I took two tabs and within an hour I was back to normal.
Is there an l-dopa patch?
Not that I'm aware of
Lol of course not...there should be!
It may not feasible due to the amount of ldopa that is required for treatment
I’m sure.