Parkinson's Disease Tulip


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Old 11-23-2006, 11:28 PM #11
Evon Evon is offline
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Default Why I started Sinemet

I was started on Requip and titrated up to 12 mgs. before starting Sinemet. Requip did help with bradykinesis and rigidity but Sinemet was the one that finally gave me some relief from dystonia. The cramping and pain subsided only to reappear at end of dose and throughout the night. Dystonia is most uncomfortable and has been with me since before dxs. Fortunately I don't have a tremor. Trying to look on the bright side if there is one when you have P.D.
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Old 11-24-2006, 01:35 AM #12
made it up made it up is offline
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Default Needing levodopa.

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Originally Posted by boann View Post
on the nature of bradykinesia without rigidity. i have very little rigidity, which i have concluded must refer to the involuntary tensing of muscles - and i once read somewhere that it is the simultaneous tensing of both the muscles that bend a certain joint and the muscles that straighten that joint that occurs in PD - no idea whether that is accurate.

i consider myself to be extremely fortunate to have escaped rigidity for this long, because it seems to me that that – and this gets to the heart of why I asked the question – is the most physically uncomfortable motor symptom of PD. All three cardinal symptoms can be disabling, but I can tell you from experience that while bradykinesia slowly robs you of abilities you once had, at least it does not cause pain or extreme discomfort.

This is the best way I have found of describing it to healthy people – you know how it feels when you have been out in the cold without gloves or pockets for some time, and then you try to do something like get change out of your change purse or even dollars out of your wallet while your fingers are still half frozen? Your fine motor coordination is impaired, right? Well, that is what bradykinesia is like, for me, minus the cold. No, there is no pain, just the failure of your fingers to adequately carry out the actions your brain is telling them to perform. (everyone can identify with pain – if you take that out of the equation, people look at you blankly when they try to understand the problem)

I can see how rigidity would impair movement, as well, but it would also be anywhere from physically uncomfortable to physically painful and/or unbearable.

I am trying to get a sense of why people start taking sinemet – and there are a million possible reasons ranging from “I don’t know anything about it and my symptoms are not so bad - I started taking it because my doctor said I should” to “I am fully aware of the dangers but for X reason I have decided to take the risk,” and I had the sense that “X reason” might more often be ultimately related to rigidity than to straight bradykinesia.

See, I am not a neuroscientist so I may be way off track, but the more I read the more convinced I become that not only is levodopa toxic (dyskinesias are clear evidence of that) but that it actually is toxic specifically to dopaminergic neurons, and I am concerned that it may be being prescribed for people who a) are not fully informed and therefore are not able to make an informed decision, and b) that some of those people might be able to get by without it – and that ultimately they would be better off for having done so.

My method, is, of course, impeccable, from a scientific perspective.
Hi Boann,
I had reservations about starting levodopa and in retrospect was a bit too **** about it.
I waited five yrs after diagnosis and I think suffered unnecessarily.
I clearly remember feeling so blissfully normal the first time I took Sinemet (which I think was only fifty mg.)
Toxic or whatever it may be, but many times I've come on after an off and thought "thank God this drug was invented."
Further down the track dyskinesias and wearing off will make life difficult but that's when the next new invention we have can be used.
I don't need it nowadays (thank God DBS was invented too!)
As mentioned in a previous query regarding levodopa it can for now give you a relatively normal quality of life
By all means hold off if you're coping without it but if you need it remember it's there.
Cheers,
Lee
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Old 11-24-2006, 07:11 AM #13
lindylanka lindylanka is offline
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Hi Boann,
You raise some interesting questions - reading the replies so far Paula and MikeTTF's are almost exactly what I would say. I have just got back from being taken off Sinemet for 4 days (not fun, but very educational), and am in the peculiar position of still after nearly four years being sent home with a 'possible PD' dx! Mainly I think because I have bilateral symptoms and a negative dat-scan. (I was told that 2-3% do not whow up on such scans).

I have only ever been offered sinemet, and have taken it since March 2003, which seems a long time ago now. I have a developing tremor which is mainly visible to others, but I don't bother about too much - rigidity and bradykinesia take up too much time! And bradyphrenia too, which gets talked about less. Your description of 'like being out in the cold' etc, desribes exactly how I was before sinemet, especially in the dreaded supermarket queue, fumbling for coins and notes. (Plastic is a godsend!)

I am currently having to fight my corner to be recognized as being dopamine responsive - I have been seen this week by five doctors who have never seen me before, and only seen me off sinemet, who avow that they see no "objective" difference when sinemet is withdrawn! I had to to say to them, Well, I can ------ well feel it!

I am very interested that you have no rigidity - or do not see rigidity in yourself - PD seems to have so many variations, even the cardinal signs are experienced differently.

I have to say I was not informed at all about levodopa, just given it, and have had to find out about it for myself. I was never offered anything else,
and feel as though I have been on a very extended sinemet trial. I am not sure about neurotoxicity - it is probable that this will be true for some but not for others, as the disease is so variable.You are right that not everyone is given information about the drugs they are given - if I had know about the different drugs available I probably would have opted for either no drugs just yet, or to try an agonist. This was not offered or up for discussion, because nobody can decide whether or not I have PD!

made it up's 'blissfully normal' also describes how I felt, both when I initially took it, and yesterday evening, when my blessed first dose kicked in, and the very small little girl voice that I have suffered with all week normalised, and I was able to sit down without having to think about it for ages. Walking will I think take a little longer to get back to where I was. I shan't even describe my antics trying to lie down on a hospital bed without sinemet or someones help - they defy description!

Sinemet has enabled me to keep some independence, something I value greatly. All my doctors this week have kept talking about 'dangerous side effects' and better if I take something else. Do they know something we don't know? Or is this just the current line that is getting taught to younger doctors? I would think that dyskinesias are debilitating, but not dangerous (??), it seems that many would rather have them than the man features of PD, or at least find that it is not a matter of choice.......

What I have learned from forums like these is that it is important to keep the levels of sinemet very even, and to keep the dose as low as you can, and there were on the old forums, many posts that showed that the 'five good years' on sinemet can actually sometimes be a very much longer period. On the other hand there were also many people who experienced side effects even earlier...........

Take care
Lindy
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Old 11-24-2006, 08:48 PM #14
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I've been on Sinemet since diagnosis this past April. I was offered Mirapex to start, and recently Requip as an add-on. (I was also offered Azilect by a MDS last week and will probably go that route.) The dopamine agonists scare me because of the OCD behaviors they increase dramatically in some people. Since I was officially given an OCD diagnosis years ago, the agonists will have to wait. I'm not personally comfortable with going that route right now.

As for my personal version of PD, my main symptoms are rigidity, bradykinesia (in terms of walking), loss of fine motor skills in my dominant right hand, and dystonia between my shoulder blades into the base of my neck. I have a slight tremor in my right hand but it's very minor.

The Sinemet works wonders for the rigidity, bradykinesia, and alleviates aproximately 75% of my dystonia which makes a huge difference. I don't think it does much for my tremor, but again, it's pretty minor. It also makes me more fluid in terms of my fine motor skills but I still struggle with that even when "on".

I've heard all the negatives about Sinemet. I've heard the 5-year stories. The speculation about toxicity and the horror stories of diskenesia. I've also heard that Sinemet creates dystonia in some people, while it relieves it for others like me. But for every bad story I've heard, I've heard dozens of positive ones.

Since my diagnosis, I've seen 4 neurologists and 3 MDS's. They've all offered different opinions and options for treatment. I've read everything I can online. I've talked to literally 100's of fellow PD patients. And the thing I've found that is extremely clear is, there is no universal answer as to how to treat PD, especially those of us who are young-onset.

So you have to find a doctor you trust, educate yourself, and then basically roll the dice and make a decision. I've chosen Sinemet and I feel the best I've felt in years. Did I make the right choice? Only time will tell, but I've decided that I'll just keep moving forward and see what happens. No regrets!

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Old 11-26-2006, 05:28 PM #15
boann boann is offline
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Default hi made it up

thank you for the feedback!

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Originally Posted by made it up View Post
Hi Boann,
I had reservations about starting levodopa and in retrospect was a bit too **** about it.
I waited five yrs after diagnosis and I think suffered unnecessarily.
I guess that is part of what i would like to see happen - that people with PD were fully informed about all of their options, the good and the bad, and so, like you, were able to make an informed choice.

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Toxic or whatever it may be, but many times I've come on after an off and thought "thank God this drug was invented."
yes, i can see that it can be helpful for some period before it makes, or contributes to making "life unbearable," as one thread referred to the state one has (or had) to be in to qualify for DBS. however, just because it might be better than nothing does not mean it is anywhere near good enough, in my opinion.

however, for big pharma, i would hazard a guess that having managed to establish such a flawed drug as the "gold standard" - a situation that allows not just for a steady income stream from the sale of levodopa products, but also carries with it infinite room for growth in the form of adjuncts that are meant to fix the problems levodopa causes - has allowed them to maintain the most lucrative possible set up for a market the size of Parkinson's.

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Further down the track dyskinesias and wearing off will make life difficult but that's when the next new invention we have can be used....(thank God DBS was invented too!)
i once asked my neuro what her game plan would be if her goal was never to take levodopa. "what if," she responded, "there were something you could take that would stop the dyskinesias?"

wrong answer.*

the right answer would be something along these lines:

they have been "trying" to fix dyskinesias since day one - that's about 40 years of "trying," which either means they really don't want to fix them or they can't be fixed. either way, the layering on of yet another drug to stop the dyskinesias is a model that has yet to succeed, in spite of countless dollars and 40 long years of precious, precious time.

it is, in my opinion, time for a new model - a non-levodopa-centric model - but we aren't going to see that coming out of any of the companies with reliable and expandable income streams via the current set up - and those companies include novartis/sandoz/orion/roche, merck/endo/bristol myers squibb, mylan/bertek/watson/somerset, teva/ivax...

discovered this weekend that roche has a controlling interest in - as in, it totally controls - genentech, which means that novartis, which owns 33% of roche, has the equivalent of a 10% interest in genetech (got this directly from a genentech sec filing). in the mid-late 90s, genentech was working on a neurturin project (neurturin, like gdnf, is a trophic factor) for PD. it seems from their press releases that that initiative died around the same time their arrangement with Roche was solidified, which was in 1999. Roche, of course, makes a levodopa product (i think it is madopar, the european version of sinemet), and Novartis, of course, is pulling out all the stops on its quest to take over the generic sinemet market with the "new, optimized levodopa therapy, stalevo."

could be coincidence of timing.

have soapbox, will travel!

boann

*i have since learned that an organization whose purpose is to help and educate people with movement disorders and on whose board my neuro sits is funded largely by big pharma. which reminds me - what is up with PAN taking money from pharmaceutical companies??? that is probably a question for another thread.
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Old 11-26-2006, 05:35 PM #16
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Default rigidity vs dystonia?

thank you, evon

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Originally Posted by Evon View Post
I was started on Requip and titrated up to 12 mgs. before starting Sinemet. Requip did help with bradykinesis and rigidity but Sinemet was the one that finally gave me some relief from dystonia.
someone recently posted an abstract or something discussing the difference(s) between rigidity and dystonia, but it was all greek to me.

how would you describe the difference between the two?
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Old 08-02-2021, 08:26 AM #17
CCooter13 CCooter13 is offline
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I know this is an old post but I agree with Stitcher. It doesn't usually touch my tremors.
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