Parkinson's Disease Tulip


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Old 02-17-2007, 05:46 PM #11
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Default L-dopa

People normally make their own L-dopa in the dopaminergic neurons in the brain from L-tyrosine :

L-tyrosine > L-dopa > dopamine

If somebody takes L-dopa, their dopaminergic neurons will produce even less L-dopa themselves. This is a process called feedback inhibition, which basically means "the more you take the less you'll make".

So because somebody has to then take more L-dopa to compensate for what they are not making themselves, they will produce even less L-dopa themselves. This is a downward spiral, so that eventually somebody will produce virtually no L-dopa themselves, and become entirely reliant upon L-dopa in drug form.

So can L-dopa be addictive ? Yes it can. Forget the side effects, fluctuations, and toxicity. The greatest problem with L-dopa is that it is a short term cure and a long term cause of Parkinson's Disease.
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Old 02-17-2007, 06:07 PM #12
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Angry Is someone going to tell me...

What`s the highest dose of Sinemet that we can reach.I know about Requip.I am working up to 16mg a day...and then up to 24mg over the following 4 weeks.TOP DOSE OF THAT ONE BY THE END OF MARCH.
How about the Sinemet.Have I got ages to go...or....

I am soooooooooooooo angry about this.
No wonder the neuro said he and his colleagues had been debating at length when he started me on them several years ago.... my age being the prime concern.
I wondered what all the fuss was about.....now I know.


BUMMERS !!!
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Old 02-17-2007, 06:14 PM #13
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Red face I didn`t mean you lot by the way

teeny tiny sorry voice here...i didn`t mean you lot were BUMMERS....i meant to say OH BUMMERS... am making myself tinier now...so i can slink away without being seen...cos someone is sure to think i was yelling at them...tiptoeing out of the door...ssshhhh
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Old 02-17-2007, 06:48 PM #14
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Bugger! Lost the posting I wrote, here goes again.
I was stopped relatively abrubtly from Sinemet, going from 1200mg per day over a 3 week period to none, due to an excellent outcome with DBS.
I'm aware of possible problems like Reverett mentioned eg neuroleptic malignant syndrome but I was fine.
I previously was stopped abruptly from taking an agonist and COMT inhibitor also with no ill effects.
Despite this I know or know of others in similar circumstances who have been on high doses of Sinemet over a long period of time.
They are prescribed a much lower dosage of Sinemet with the possibility of not needing to take it then continue despite these recommendations to take relatively high doses of Sinemet.
So yes I do think there can be an addictive component to this drug.
Having said that though I clearly recall the trauma of a Sinemet challenge test when your body needs the drug to just move and 12 hrs is spent without the drug...awfully uncomfortable!
Cheers,
Lee
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Old 02-17-2007, 07:24 PM #15
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Default confused

Will someone tell me how to calculate how many mg i am on.
my drugs are Sinemet plus 25/100

which figure is which?
is each tablet 125mg of whatever...or calculated just by the levadopa level?
Forgive my ignorance here...all i know is i take 4 a day.
so...is it 4 x 125 mg or
4 x 25mg or
4x 100mg

DOH...

Plus my sinemet cr

HELP..
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Old 02-17-2007, 07:40 PM #16
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Default Steffi

Hi Steffi,
It's counted as the levodopa you take so I'm guessing you're on 600mg/day. Here Sinemet CR only comes in 200mg dosages so does that sound right?
Cheers,
Lee
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Old 02-17-2007, 10:01 PM #17
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Default Thanks Lee

I can rest back a little then...am only at about half the top dosage.
Many thanks
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Old 02-21-2007, 11:44 PM #18
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Default Thank you for all your info...

I have reached "critical mass" and my sinemet is doing strange things. It has been for years, but I've just chalked it up to "that's life with PD. HOWEVER I believe the Duck is right, and we stop producing our own dopamine as we generously supply our brains with a free meal (remember there is NO free lunch!!) Latley I've required high doses of sinemet ,preferably the quick release yellow stuff, with no dyskinesia but blood sugar readings all over the map. To make a long story short I went to Emerg at the hospital yesterday and I looked like a junkie in withdrawl... by the way, in spite of the high dosage (200/50 every two hours, and adrenaline running the biggest party of my life inside my body) I did not have any dyskinesia!!!! I knew I was headed for a crash. The sane Doctor at the ER told me....your just gonna have to sit this out because there is no antidote. Fortunatley it has a short half life. He gave me a dose of Atavan and was surprised to see how little effect it had on my shakes. As the sinemet wore itself out I came down off the ceiling and they sent me home. But I still had to take some sinemet to get me mobile again. He said to use my benzodiazapines anywhere I can substitute them for the shakes, rather than takeing another sinemet... untill I can get to a Neurologist and he sent a referral for me. I came home and slept for 18 hours. Woke up relativley calm and trying to stay that way. My system is super sensitive to any kind of glucose and I am eating protien which is sometimes working for me and sometimes working against me. I believe I am addicted to sinemet. I believe the severe shaking is withdrawl when it wears off. The more we take the more we need. Untill we crash and crashing can come in a variety of ways as Viki's story illustrates. We have different kinds of PD but take the levodopa. I think my body or my brain is turning the sinemet into adrenalin for whatever reason I'm not sure. This whole thing has come about because I started taking my blood sugars and began to correlate some of my readings with stuff I'd read here and with my own record book. The whole staff at the ER were amazed by my creative charting and commentary of what was happening to me. The Dr. talked to me like I had a brain (even if it was in distress mode) and said "we don't know what to do with you...we have never seen this before and we don't know much about PD". He even took the time to read my letters that I keep in a binder from my various Neurological visits. I'm telling you...keep a record of what meds you take and when and the results. I believe I'm strong willed enough to get myself out of this hole, but I know it's going to take a while. Our bodies are incredibly resiliant but we have to learn to manage our minds. When we panic we're toast. In the back of my head I keep thinking about what the pharmacy business is really all about... that's why we just keep producing more medications. If your going to produce a drug you need to have a clientelle! I've really got my shirt in a knot about this, and I want some answers. I'll let you know how the story progresses. But first I have to find a GP who keeps his pen in his pocket and will talk to me about what is happening. It may take a while.. I think one awnser is to develop meditation techniques for the rough stuff. Levodopa may be a friend we'd be well advised to keep a close eye on..... More later. JW
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Old 02-22-2007, 06:51 AM #19
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Interesting Question.

I have a different point of reference that might add to the discussion.

I have dopa responsive dystonia (DRD), a condition that presents similarly to PD but is caused by a metabolic defect in the pathway that produces dopamine. There is no damage to the cells in the basal ganglia.

My symptoms started when i was 10 but i did not start treatment (sinemet) until i was 20. By this stage, i was unable to walk at all (from age 14), could not raise either arm above my head, and had difficulty with speech (sometimes) and breathing (less often). I was in pretty bad shape and didn't think i would make it to 25.

I was given a trial of sinemet and within 2 weeks was walking around my house without any aids. It only took 3 days for me to be able to reach for stuff above my head.

I have been on medication for 8 years, and my dosage has been fairly stable. My walking is not as good at night and in the morning before my meds kick in but i am doing pretty well compared to before meds.

About 18 months ago, i decided to undergo metabolic testing to confirm the DRD diagnosis. In order to do this, i had to go off my meds for 10 days. This was a big decision but the confirmation was important to me and so i went ahead with it.

I stopped the meds on a Fri night. I was a bit tight the next day but was still walking. Over the next few days, my body just got tighter and soooo tired. I had taken 2 weeks off work, and there was no way that i could have gone to work by the Monday.

By day 7, i couldn't walk or stand and could barely sit up unsupported. My voice was weak and i was just exhausted.

However, through all this (and this is the main point of my story), my symptoms had NOT gotten worse than the level that they were at 7 years earlier before i started medication.

The metabolic testing confirmed that i had DRD due to GTPCH defciency. This was a great result for me, bc the option that it was actually juvenile onset PD was still a possibility.

I think that in PD (and in my case too) the sinemet covers up the symptoms, but in PD there is the progression of symptoms that is not as obvious when on meds, and is more confronting if you go off meds.

On the other hand, what is the definition of addictive? If it means that you can't live without it, or have to take it to feel 'normal' (stuff that i have 'drug' addicts say), then i am definately 'addicted' to sinemet.

Take care,

V
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Old 02-22-2007, 08:15 AM #20
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Default rosebud

Sorry to hear of your trials. But you may be right about the adrenalin. PD seems to be as much an endocrine problem as anything and the role of stress is grossly underestimated. I sometimes suspect that the reason people report positive results for tai chi may be as much stress control as anything.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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