Parkinson's Disease Tulip


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Old 06-26-2014, 12:56 PM #1
Terry GA Terry GA is offline
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Default Questions about medication

I was diagnosed with Parkinson's disease in late 2012 at the age of 49. The doctor put me on Sinemet straightaway which I've now found out probably wasn't the best course of action. I take Sinemet 25/100 three times a day. Lately, I've been getting a lot more fatigue and breakthrough shaking. I'm also getting more slowing down.

Wondering if it could be that my medication is wearing off. I take it at 8:30 in the morning, 230 in the afternoon and 830 at night. Is this pretty typical?

Most of my shaking comes on with exertion or any kind of adrenaline rush. Has anyone found a medication or something that will help with the adrenaline? I've been taking BuSpar for a couple of years but that doesn't seem to help.

Also considering taking Mucuna between doses. Does anyone do this?
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Old 06-26-2014, 05:45 PM #2
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Welcome Terry GA.

Someone will be along to help.
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Old 06-26-2014, 06:24 PM #3
johnt johnt is offline
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Terry,

Welcome to the forum.

I too was diagnosed at 49. I'm now 9 years post diagnosis.

You write:
"The doctor put me on Sinemet straightaway which I've now found out probably wasn't the best course of action."
There is much disagreement as to what to do in the early days: drugs/no drugs, levodopa/agonists/MAO-B inhibitors etc. What your doctor did was reasonable, though I hope that he explained the pros and cons.

You're now on 300mg per day. That's not unusual. In the next 10 years your daily dose is likely to increase, perhaps to a 1000mg or more.

You're taking the doses 6 hours apart. This is less common than once every 4 hours, increasing to once every 3 hours or even more frequently. From what you write it is worth talking to your doctor about reducing the time between doses.

Some people argue that various PD drugs slow down the rate of progression. But, as far as I can see the effect, even if it exists, is minor. So you're taking the drugs for symptomatic relief. There is in some people a propensity to stay under-medicated in the hope that the drugs' effectiveness will last longer. Other people say you do better to be fully medicated all the time.

I recommend that you exercise and socialize.

John
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Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 06-26-2014, 06:35 PM #4
soccertese soccertese is offline
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Are you seeing a movement disorder specialist?
How long have you been on 300mg/day? That's not a very large amount.
May I ask what your reasons are for not wanting to take more sinemet? sometimes adding just a 100mg is all you need. remember, less than 10% gets to your brain.

Since you seem reluctant to do the obvious thing which is to test a higher dose I assume there is more to this story so I'll just recommend you read "THE PARKINSON'S DISEASE TREATMENT BOOK" by J.ERIC ASHLOG. You can get a used copy on AMAZON or EBAY. It concentrates on treatment choices, what is normal progression and rules for increasing doses, adding drugs, changing drugs. it's all conventional treatment advice which may not be want you want but it might help. reading it can't hurt.
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Old 06-26-2014, 08:12 PM #5
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[Most of my shaking comes on with exertion or any kind of adrenaline rush. Has anyone found a medication or something that will help with the adrenaline? I've been taking BuSpar for a couple of years but that doesn't seem to help.]

Even though it's customarily used with essential tremor, propranolol (Inderal) was prescribed by my primary physician to combat the pd shaking caused by adrenaline. I take a small dosage (10-20 mg) when I anticipate being in a stressful situation (like watching the World Cup ). It's used by classical musicians facing auditions and even by some surgeons who don't want their hands shaking during an operation. Talk to your neuro for advice.

Jon
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Old 06-27-2014, 02:02 PM #6
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Quote:
Originally Posted by aquario View Post
[Most of my shaking comes on with exertion or any kind of adrenaline rush. Has anyone found a medication or something that will help with the adrenaline? I've been taking BuSpar for a couple of years but that doesn't seem to help.]

Even though it's customarily used with essential tremor, propranolol (Inderal) was prescribed by my primary physician to combat the pd shaking caused by adrenaline. I take a small dosage (10-20 mg) when I anticipate being in a stressful situation (like watching the World Cup ). It's used by classical musicians facing auditions and even by some surgeons who don't want their hands shaking during an operation. Talk to your neuro for advice.

Jon
Terry, like Jon, I also will take 10 - 20mg of propranolol prior to situations I think may be stressful or cause adrenaline to flow. It does help me, albeit only mildly. This is really a very small dose as the original dosage for hypertension ranged from 80mg to 320mg. Many musicians, stage actors, etc. take the low dose prior to a performance.

Regarding the timing of starting L/C, there is a recent thread I started that has some information as well as discussion about the issue. There clearly is no set answer. However, there has been a recent discernible trend to starting earlier rather than later.

Levodopa Shows Slight Edge as Initial Treatment for Parkinson’s
http://neurotalk.psychcentral.com/thread205493.html

Good luck,

Gary
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