Perhaps it's just me being paranoid, but sinemet is looking more and more like an addictive substance to me. My "off"s are starting to look more and more like I remember my father looking when he had to go into rehab for alcohol addiction. I did a quick google search and only came up with one hit where a 49 year old woman who had been on it for 7 years felt she was addicted. It certainly has all the earmarks of addiction in my books... your thoughts???

some do get addicted to the sinemet 'high" (their "on" time).
Me, I could not wait to get off it.

Interesting question though.

Charlie

Hi...never really thought about this before so thank you for raising this question.We tend to just go along with what we`re given don`t we,no doubt initially relieved that we are being offered some relief from our condition.I guess it isn`t until we`ve been on these drugs a while that we start re-thinking the effects they may be having on the downside.

Indeed I was dealt a drug a few years ago which laid me flat.When I investigated it further the warning about its extensive side effects,mainly patients falling to sleep at the wheel of their car,was listed in huge red letters.My neurologist mentioned nothing of this.In fact ,my gp intervened and I was swiftly taken off this drug.Another drug I had been on for several years was known to cause a fatal lung disease of which I was showing early symptoms.

I do believe we become dependant on these drugs.I have noticed lately that I am getting more "off" periods but maybe that is to be expected in my 10th year [at least] with PD. My dosage is 4 tablets a day and one Sinemet slow release at bedtime.

However,on my last visit to the hospital two weeks ago,it was my Requip that was increased..not the Sinemet.I am soryr...I haven`t been much help,and can only empathise with you.But what is the alternative...like so many other facets of PD...do we say "better the devil we know" sooner than be switched to a drug which may not be as effective in managing the symptoms,but may be less severe on the side effects.

I am sure someone will enlighten us on this thread.

Good point you`ve made.
x

Rosebud, I think it must be addictive since some really nasty things can happen to you if you're suddenly taken off of Sinemet. That's why PD patients used to be put in the hospital for "drug holidays" - so they could be monitored for adverse reactions while being takern off their meds. I don't think drug holidays are typically used anymore although I have no stats to back this up. I just know you don't hear much about them anymore.

There is a specific, dangerous condition resulting from a sudden stopping of Sinemet. If I can find the name of it, I'll update my post.

As for being addictive, I'd say I'm also "addicted" to my Mirapex, Comtan, and experimental drug, Istradeffyline, as I don't even want to try functioning without them. Together they give me a pretty good quality of life.

And it can be quite deadly. Will provide details later if no one else does. Right now I gotta go though.

Yes, thank you! That was the condition I was referring to.

"Sinemet has been associated with a syndrome resembling neuroleptic malignant syndrome on withdrawal or significant dosage reduction after long-term use."

From The National Institute for Neurological Diseases and Stroke (NINDS):

What is Neuroleptic Malignant Syndrome?
Neuroleptic malignant syndrome is a life-threatening, neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs. Symptoms include high fever, sweating, unstable blood pressure, stupor, muscular rigidity, and autonomic dysfunction. In most cases, the disorder develops within the first 2 weeks of treatment with the drug; however, the disorder may develop any time during the therapy period. The syndrome can also occur in people taking anti-Parkinsonism drugs known as dopaminergics if those drugs are discontinued abruptly.

Is there any treatment?
Generally, intensive care is needed. The neuroleptic or antipsychotic drug is discontinued, and the fever is treated aggressively. A muscle relaxant may be prescribed. Dopaminergic drugs, such as a dopamine agonist, have been reported to be useful.

What is the prognosis?
Early identification of and treatment for individuals with neuroleptic malignant syndrome improves outcome. If clinically indicated, a low potency neuroleptic can be reintroduced very slowly when the individual recovers, although there is a risk that the syndrome might recur. Another alternative is to substitute another class of drugs for the neuroleptic. Anesthesia may be a risk to individuals who have experienced neuroleptic malignant syndrome.

B****y H*ll !!! What in Gods name are we being fed? I never knew any of this.Has anybody out there ever been given this info at the onset of being prescribed these drugs?Does that mean once on Sinemet...you can`t damn well get off?
Whoops! Sorry. A rare "anger" moment.

My apologies.

I went through the "Sinemet vacation" twice in Summer of 2005. The first time I was unable to breathe. The neurologist on call when I was brought to the emergency room said difficulty breathing had nothing to do with Parkinson's. I was in ICU all night on life support and tied down to the bed with restraints to keep me from hurting myself from the severe dyskenesias I began experiencing. When the neurologists finally came the following morning, my Kidneys were beginning to fail because they could not handle the amount of protein my body was breaking down.

I was put on life support. It took them three tries to successfully get my body functioning on its own.

My son, a paramedic, who was at home when I could not breathe said he knew I was fighting for my life because my chest walls were not moving. He said only my diaphram was moving and my throat was gasping for air. He called it a death thrall breathing. If he hadn't kept by my side encouraging me to keep breathing I am sure I would have died. It is the first time I ever saw him cry as an adult.

Vicky

When I fail to take my dose of Mirapex, restless leg comes back with a vengeance. Once the sensations start, they are much worse than I ever remember them pre-Mirapex. The last time this happened, I actually had head to toe shivers or spasms on a rhythmic and persistent basis for about two hours. I felt like I wanted to freak out, and I could feel with dread each spasm coming on. All this took place while I was waiting for my make-up dose to take effect. I think it was akin to what you see in the movies when someone needs their heroin or cocaine, so I would guess that Mirapex might bring about a dependence and is, therefore, addictive. However, I have reduced the amount of Mirapex I take on a very, very gradual schedule. I would love to stop it, but I fear the effects of so doing. I don't know what causes restless leg, but I truly dread it.

I would think that addiction and therapeutiic effects differ thus: Therapeutic drugs make up for a deficit that is present in the body and thereby make us closer to good health. Addiction results when a drug makes up for a deficit but also programs our bodies to have a bigger deficit once the dose wears off. The next dose then has to be bigger to accommodate the bigger deficit.

I am not sure Sinemet does that. I am not sure Mirapex does that either, but my reaction to missing my dose certainly was significant.

Ann

...who don't know: Sinemet and ldopa in general has been controversial from Day One. Despite the reassuring words from the Big Boys a lot of doubt remains. Among other things there is reason to suspect that it actually contributes to the progression of our disease. And a lot of the symptoms we exhibit, such as dyskinesia, are not from the disease but instead are from the medicines. That's one reason we need to force the research community onto a new track. There is no doubt that ldopa was a vast improvement in many areas at the time, but they became so enamored of it that they allowed it to skew the research. As a result we haven't had a "real" change in PD treatment in thirty years.

One thing that goes on is increased oxidation in the brain. An anti-oxidant with the ability to get past the BBB taken along with the ldopa seems a reasonable action to me. I take alpha-lipoic-acid for that very reason.