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A link between dyskinesia and long term use of sinemet


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#1 gazelle66

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Posted 01 February 2012 - 05:27 AM

Hello All,

I know some members here have had pd a long time and others study the medical papers a lot, so I am hoping you might supply some thoughts.

I have a friend who was very keen to start using the duodena pump, for the express reason of reducing the risk of getting dyskinesia. He is aware of a fairly recent study that seems to prove that 90% of pd patients on l-dopa get this symptom within ten years. This seems very high to me but maybe is true.

My friend is currently on DA tablets but, like so many others, is experiencing psychological side effects that mean he will ask to swap to l-dopa. He has possible access to the l-dopa pump but this will involve surgery to fix it in. However, he wants the pump rather than sinemet tablets because he feels it regulates better the amount of medicine going into his body (to get the lowest possible amount and hence reduce the l-dopa intake and so the risk of diskinesia)

This friend looks to me to be a fit person. He runs and plays sports. He is in his early fifties and I am suprised that he wants to tie himself to wearing a pump at this stage of his life, but I understand completely why he does if the study is correct. Because the upshot of having dyskinesia is that subsequent stem surgery does not seem to work.

I would appreciate any opinions / experience anyone would like to share regarding this subject

thanks
Sue

#2 gazelle66

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Posted 01 February 2012 - 12:11 PM

ps....i'm not sure I made my question very clear....

I am curious to know if people agree with the figure of 90% of people getting dyskinesia after ten years on levodopa or to hear of the long term effects of taking levodopa.

regards
Sue

#3 MarciaJ

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Posted 02 February 2012 - 07:06 PM

I hadn't heard this. It's new to me.

marcia
<3.<3.<3.

#4 xaxa

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Posted 08 February 2012 - 03:28 AM

My MDS told me that IF I have PD, I WILL have dyskinesias within 5 (maybe 10 if I'm lucky) years of starting Sinemet. Period. Anyways, those were his words..... xaxa

#5 KiminJapan

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Posted 08 February 2012 - 06:09 AM

My MDS told me that IF I have PD, I WILL have dyskinesias within 5 (maybe 10 if I'm lucky) years of starting Sinemet. Period. Anyways, those were his words..... xaxa


I had dyskinesia within a month of starting sinemet. First medication. Late diagnosis. Dyskinesia bothers me far less than immobility!

#6 Beachdog

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Posted 08 February 2012 - 12:38 PM

ps....i'm not sure I made my question very clear....

I am curious to know if people agree with the figure of 90% of people getting dyskinesia after ten years on levodopa or to hear of the long term effects of taking levodopa.

regards
Sue

I believe it ...

Beach(bobble head)dog

#7 netgypsy

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Posted 13 February 2012 - 01:02 PM

PLEASE READ DR. OKUN'S POST in ASK the DOCTOR on SINEMET IS NOT TOXIC AND DOES NOT CAUSE PD TO PROGRESS!!!

Everyone I know who takes sinemet had dyskinesias and they are NOT a PROBLEM. They tell you the dopamine has made it to your brain. They don't make you writhe like Michael J Fox on a very old interview. He was overmedicated. In my case my right foot will tap a bit. It looks like I'm just a bit antsy or bored. It's very very slight and I welcome it because it tells me I can function normally.

There are many ways you optimize your meds. All this stuff about 5 years and a time frame when when sinemet no longer works are totally BOGUS. PD is progressive. No matter what meds you take, it will progress. If you never take sinemet, just sit frozen in wheel chair, then start on sinemet it will work, but not as well as if you started it when you first had symptoms. It's like diabetes - tweaking the dosage is difficult but you can do it. Just like getting the right amount of insulin is tricky. You don't not take insulin because the disease is going to progress and you will have to adjust the dosage to control it and you might have side effects. At least if you overdose a bit on sinemet you don't die like you can with insulin. You'll just have a bit more foot tapping or hand tapping or whichever you happen to get with sinemet.

Sinemet WORKS REALLY WELL. It just takes time to get the right dosage. We badly need a patch but since there isn't one, you just experiment until you get it optimized. FORGET ALL THIS CRAP about what sinemet is going to do to you. It's not the sinemet, it's the PD that is the problem.

#8 gazelle66

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Posted 26 March 2012 - 02:55 PM

Thank you for the replies. I have found and read Dr Okuns post. My question was prompted by the use of a pump to supply a constant supply of either agonist or levodopa....I know of two people who have reported a great improvement in symptoms when using this pump. I guess that actually the pump is doing what Dr Okun suggests and in with more control than a pill....i.e. it is supplying just the right amount of medication at the right time. Therefore, you are at less risk of overdosing and dyskinesia. There doesn't seem to be anything in Dr Okuns answer to suggest that overdosing on medication INCREASES a permanant state of dyskinesia. I guess as the disease progresses then the ratio of medication versus the area it is treating increases, therefore increases the chances of overmedication.

This all hits home the need to monitor doseage and timing quite carefully. Thanks again. If anyone is using one of these pumps it would be very interesting to hear their opinion of them.

kind regards

#9 Silverfoxx

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Posted 02 April 2012 - 08:53 PM

People, Those of you who have replied to the post, and the poster, I would love to know where you all get your information from, as for the "friend", he doesn't really know what he is talking about! All of you have the incorrect information. Let me begin with a discussion of PD101. First of all, like our PD is so very different in each and every one of us, so to is the reaction to Sinemet or its generic equivalent, carbidopa/levodopa.

In my case, every PD drug tried on me presented with detrimental side effects. All except Sinemet or its generic form. I began taking Sinemet in Nov., 2001. It still works for me today exactly as it did way back in 2001! Now, 2001 was a good and bad year for me. Good in that I finally kew what was wrong with me. You see, my tremor began in the summer of 1976. If you've all done your homework while learning as much about PD as you can (apparently a lot of you haven't), you would have learned that 80% of the dopamine producing cells in your brain have been destroyed by some unknown factor. when your symptoms become visible. But, it takes a specially trained neurologist, a Movement Disorder Specialist. a MDS, to accurately dx PD. Believe it or not, but there are quite a few "look alike" illnesses that mimic PD.

Having said that. I went undiagnosed for 25 years! I knew something was wrong, my PCP knew something was wrong. Everything I was tested for in those 25 years came back normal. I had progressed to the point where my entire left side was tremoring almost constantly. Somewhere around the year 2000 I suggested PD to my PCP. His reply: :It can't be PD, that's something only old people get." As you can telll by that remark, he knew as much about PD as some of you! To make a long story short, an accident at work caused me to be seen by a MDS. Thus, the beginning of my new life with a name for what had been wrong with me for the previous 25 years ... PD.

Those two letters, PD, used to scare the heebie jeebies out of me. I felt lost and alone. First I found Sinemet, which gave me my life back (and I still take it today. eleven years later) and I have NEVER had a dyskinesia from it. I have several friends, from this very forum who have been taking it much longer than I, and they have had no ill effects as well!

Having had PD for so long has taught me how to be adaptable and to really become a student of my body and brain. The doctors are amazed at my longevity, and quite frankly, so am I. But I now know that PD will not be responsible for my death. One of the things PD has taught me is to not be afraid of death. You see, for those of you who don't know, I have end stage Emphysema. The whys are not important. What is important to me, still, is being here for the PWP of the world. To answer as many questions about PD as I can, and to just be here to listen. To let you know that you are, by no means, alone in your struggle. The PD road does get bumpy at times. Let me help to smooth out the bumps!

Your friend in PD,

Jim Evridge "AKA:SILVERFOXX_FIGHTING_BACK"
"Sometimes our light goes out but is blown into a flame by another human being. Each of us owes our deepest thanks to those who have rekindled this light." Albert Schweitzer

#10 gazelle66

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Posted 03 April 2012 - 04:13 AM

Hello Silverfox......

I was immediately affronted by your rather rudely written reply.....but ended up with a smile on my face. I can see that you want to help people....and really.....if we were all as perfectly informed as you then you would be out of a job wouldn't you? :wink:

But seriously.....I think the fact that you say yourself that cells are destroyed by an 'unknown factor' and also the conflicting and confusing information often presented, I feel everything is up for debate and ultimately everyone choses their own road. I am extremely pleased to hear from you that both you and several of your friends have taken sinemet for such a length of time without dyskinesia appearing. This information helps when making a choice.

Here is a link to the study referenced by my "friend" http://lup.lub.lu.se...&fileOId=625597

I was aware of your Emphysema and remember being moved sufficiently by your post some time ago to add a reply. I'm glad to hear you are doing so well

Regards

#11 Silverfoxx

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Posted 03 April 2012 - 07:11 PM

Hi Jim,

Fancy seeing you here!! hehe
How are you fairing?

Here's a song for you. Do you remember it?


[/quote]




Tonya ... is that you?
"Sometimes our light goes out but is blown into a flame by another human being. Each of us owes our deepest thanks to those who have rekindled this light." Albert Schweitzer

#12 oakley

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Posted 26 April 2012 - 01:31 AM

Cut my Sinemet by half and feel great - reborn!

I've had PD for 20 years. the first 15yrs. 3 sinemet 25/100 a day took care of my tremor. My other problems were stiffness and occasional curling / cramping of toes.

The last 4 months I have been struggling with dyskinesia so bad that I cannot drive, hold a glass and drink, eat without a big mess. sit in a chair for very long. The last 4 days I just started omitting the last 2 of 4 med times of sinemet........and I feel wonderful!

I left a message for my Doc but have not heard from him yet.

So PD is strange, lots of variations for the individual as well as between people.

Has anyone had a similar experience?

Oakley

#13 carruthers209

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Posted 30 April 2012 - 10:06 PM

I read the above posts and didn't see anything about using Amantadine which worked well and eliminated my husband's dyskinesia. He has had Parkinson's for about 12 years now. He had previously been taking his carbo-levadopa pills about every two hours. He was having a lot of dyskinesia and it became uncomfortable for him so we went to his neurologist to ask for advice and help. She was very helpful and put him on Amantadine, twice a day and told him to try cutting back his carbo-levadopa pills to about every three hours. This worked really well. His dyskinesia were the result of his frequent dosing of carbo-levadopa. He is still dyskinesia free and after a year the Amantadine is still working.

#14 oakley

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Posted 30 April 2012 - 10:23 PM

Amantadine, yes I tried it a few years ago and was allergenic to it. It made my ankles and legs swell. Thank you any way.




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