Didn't know...

[ol'cs]

Where to put this under, so I started a new thread. Hopefully, a short one.
My wife came in the house after driving my son to school, and said " there was this thing on the radio, saying there was a "new treatment" for PD, a patch of some sort, ropiner...er something like that".
I said to her "Ropinirole; Requip, you don't remember that i was on that two years after dopa needed a boost and I went agonist shopping" "oh yeah, she said, that's the one that turned you into a zombie and you tried it a couple of times didn't you" "you're right" said i.
They have tried to market that agonist for "restless leg syndrome" and iit is a classical "pumped" drug to doctors. A few of us it works well for, but as far as I'm aware most of us just had a very bad experience with it. In the meantime, how many scripts have been unneccessarily written for it? How many bottles are sitting around in peoples freezers, or just chucked? And worst of all, how many older PWP who trust their doctors judgement completely, have been put on requip and hobbled along, feeling worse and just keep taking it "because the doctor ordered it" or are non-compliant and have no back up, in other words not medicated?
This is a question that has always bugged me, waiting for a patents life to come to an end, and just putting the same compound in a different delivery form to extend the patent life. I hear that the FDA and the USPO are going to do something about this, and even look a little harder at "me too drugs":eek: :D (looks good on 'em).
But the thing that still really burns me are the hosing of the uninformed public. It give's both false hope to the friends and caretakers, and sub-optimal therapy to those who don't care to spend the time "getting to know" enough about the disease they have, just trusting the doctor as much as the mechanic who fixes their brakes. Schmufflin' Schmucks', drug companies:mad:

[Suffolkchris]

I have lost count of the times friends, family or work mates have told me that they have heard on the news that there is a new drug to cure PD.
If/when I try to explain about whatever over hyped mis reported story they have heard I get the feeling that I am being ungrateful or precious about my PD.

[CTenaLouise]

Dear cs,

it's more than requip!? I can't believe what the pharmas are pushing -
the doctors are giving scripts out to
the people whom I have met at the grocery store pharmacy -
who have restless leg syndrome
which could be a profound B-12 deficiency!


the neurologist or md's are giving them mirapex -also a bad drug!

at the hardware store -the man told me he was taking leva-dopa/
carbi -dopa!!! he said the generic drug of what they give PD patients! :eek:
I showed him my meds and he said yes!

The lady at the checkout told me they were giving mirapex to her 16 year old daughter for restless leg syndrome

but isnt dopamine -a chemical many can just get addicted to?
I have been told yes, by a very brilliant scientist...

so the "drug lord's are pushing addictive drugs... thats my sumise.

European Journal of Neurology
Volume 11 Issue 5 Page 339 - May 2004

To cite this article: T.-B. Ahn, J.-W. Cho, B. S. Jeon (2004)
Unusual neurological presentations of vitamin B12 deficiency
European Journal of Neurology 11 (5), 339–341.
doi:10.1111/j.1468-1331.2004.00778.x

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Abstract
Unusual neurological presentations of vitamin B12 deficiency
T.-B. Ahna,daDepartment of Neurology, Seoul National University College of MedicinedDepartment of Neurology, Kyung Hee University Hospital, Seoul, South Korea, J.-W. ChoaaDepartment of Neurology, Seoul National University College of Medicine and B. S. Jeona,b,caDepartment of Neurology, Seoul National University College of MedicinebDepartment of Neurology cClinical Research Institute, Seoul National University HospitalaDepartment of Neurology, Seoul National University College of Medicine; bDepartment of Neurology and cClinical Research Institute, Seoul National University Hospital; dDepartment of Neurology, Kyung Hee University Hospital, Seoul, South Korea
Professor Beom S. Jeon MD, PhD, Department of Neurology, Seoul National University Hospital, 28 Yeongeon-dong, Chongno-gu, Seoul 110-744, South Korea (tel.: 82-2-760-2876; fax: 82-2-3672-7553; e-mail: brain@snu.ac.kr).
Abstract


:eek: :o :confused: :rolleyes: :(

[Teretxu]

As far as I'm concerned they can scrap all agonists; none of them have ever worked for me other than to make me sick as dog, make me swell like a balloon, behave like a maniac, get instant migraine or become so lightheaded as to run red lights. I tried them all, Requip, Mirapex, cabergoline... and I would also add amantadine to the lot of useless meds, that do more harm than good.

Again, that's my experience. I know some of you are benefitting from some of these meds, but I would really like to see some serious statistics (i.e. by the WHO) about their cost and their effectiveness, to determine whether they are justified. I seriously believe that most of us would feel much better and get more relief from low-dose muscle relaxants, that are dirt cheap besides.

[Suffolkchris]

Teresa

What was your experience with Amantadine if you don't mind me asking?

Chris

[Teretxu]

Chris, I was given amantadine for my dyskinesia a few years ago. I took it for a little over a year. At first it helped, but the counter effect was mental confusion. Like I said, I found myself crossing the street without looking out for cars and once, while driving, I ran a red light and almost got myself killed. The "lesser inconveniences" were swollen feet, hands and abdomen to the point that my clothes didn't fit and I couldn't stand upright more than a couple of minutes because of the swollen feet. I could only wear canvas loafers (espadrilles) and flip-flops. That meant: no more walks, no more cooking, no more housework ... you name it.

I believe our own Birte was doing Ok on amantadine, though.

[JACKMANA]

:( Sorry to be the 'bad guy' here or the 'odd one out' but my experience of Requip has been really good. I have been asking my PD support team when the slow-release version will be licenced in UK as the only (minor) side-effect I experienced was drowsiness 30 mins after recommended dose (various amounts at varying stages of treatment) administered 3x daily. After self-regulating to equal doses @ 2 hourly intervals drowsiness disappeared. I have now reduced from 11mg daily to 10mg (2mg x 5 doses).
Sinemet was my entry drug as part of a clinical trial. I took it for the minimum 1 week needed - I fainted, fell was confused had slurred speech - I thought I was dying!!
There are no new/quick/wonder cures but the publicity accompanying each 'new' treatment keeps PD in the public consciousness.
If someone is aware enough to ask we can always put them right - the ensuing conversation is usually enlightening !!:)

[ol'cs]

Amantadine is a relatively benign drug in the "Agonist" class (for most of us). Some first dxed PWP are put on Amantadine alone and it seems to work OK for about 1-3 months before it's efficacy fades and then powerful agonist therapy (requip, mirapex, pergolide) is often offered before sinemet.
If you go for sinemet right away, they often want to combine it with an agonist. I tried all the agonists to no avail, but today continue to use amantadine in conjunction with Sinemet. IT just seems to suit me well, offering an unexplained synergistic effect. I don't have the side effects bad enough to stop it, but i'm down to 100mg/day from 200mg/day. Besides, its an antiviral drug and i haven't has a bad cold or any flu or anything attributable to viral infection in a long, long time. Take my Amantadine away from me and i have to boot up the sinemet to over a gram a day, and that means more dyskinesia. Hope this helps a bit. cs

[ol'cs]

I always accompany any spiel i give about reqiuip or any other agonist is that for some of us it DOES indeed work very well.cs

[caya]

I am with you......another odd one out. In June I have been symptomatic 3 years and dxd 1 year. Been on Requip and 1200 mg/day CoQ10 this first year and so far so good. In the beginning the Requip made me sick and dizzy and wobbly. But that eventually wore off and as I said all is ok......at this point anyway.

Caya

[stevem53]

I cant take Requip because it makes me sick..I take a small dose of Mirapex..(in addition to Sinamet).. and I dont think it really does anything

I have another damn cold, and Ive been sick once and this is the second cold all in two months or so..I havent been sick for years and years, and all a sudden everytime I turn around Im either sick or have a cold

Thanks for the tip about the Amantadine cs..I have some here, and Im gonna take some tomorrow..;)

[reverett123]

This is just speculation, but your colds may be a side effect of the dextromethorphan. I know, ironic that a cough syrup might do that...:)

The reason I mention that is that one of the characteristics of PWP is that their immune systems are pretty good and we don't get colds, etc. The tradeoff, though, is that we are more prone to autoimmune problems.

Since we don't really know what the DM is doing, it is possible that your immune system is moving toward a normalized state of some sort. That's not necessarily a bad thing, just watch out for the flu.

How are you doing with the DM anyway? I may try it again. I found that my blood pressure problem was a dying cuff :o

[CTenaLouise]

what if we really do not have Parkinson's Disease?
what if we have been categorized poorly, by doctors that never use their brains - they read the diagnosis right out of the book -and their technology is stagnant, they never let it grow into a different category, because
they are boxed in thinkers?

what if what we all have is a certain type of toxicity and the big pharmas
are encouraging the doctors not to think, by bribing their neurons to think
in terms of greed...

I truly believe with all my heart - that our humanity needs to surpass our
bio -tech- no-logy .

Our human spirits of love are truly greater than any drug!
Mother Teresa of Calcutta was one of those humans with a Godly Spirit, people who show their humanity in humility and kindness, and actually allow -the hearts of those they want to help by wanting them to heal, show great passion -that greatest law -is to love one another

if the BIO -Tech's were more motivated by goodness instead of greed, I believe it would be the greatest gift to Humanity~

The Great Ones give -and forgive
The Spineless ones steal, and kill and make more patents...
if you do a google search on this -it will shock you,
it disgusted me!

use these words:

"big pharma , blood money"

or click this link
http://tinyurl.com/yws8my

[reverett123]

I have a strong tolerance for requip. I'm taking 28 mg per day which is 4 mg over recomended max but there is a lot of fudge factor there. Some have taken close to 50 mg per day with no problem.

I can't say that I like it though. I also take 700 mg sinemet and I say a little prayer for my liver each night.

Question- has anyone had any experience in switching from one agonist to another? Any improvement? What about mixing them?

[reverett123]

and one which deserves its own thread which I will start:)

[wendy s]

I was started on Permax, and the first teeny tiny dose nearly did me in - I was up at night after and nearly passed out and was literally seeing stars in the dark room. And then the awful nausea started, and went on and on and on. It would occasionally get a little better, but was never great. I finally over-rode my MDS and got my family dr. to switch me to Mirapex. That was after discovering this site, and becoming educated.

Mirapex gives me slight swelling in my ankles, and my nose is a wee bit runny, but other than that, no problems that I know of. I keep thinking that maybe it doesn't do much for me, but with trying to keep up with work, I haven't tried cutting back yet.

As an aside, Steve, you often mention that you might be under-medicated. I was ready to stop work and go on disability. My MDS suggested another dose a day of Sinemet 25/100 - now I"m on four - and it has made a huge difference. I'm enjoying work, feel like I'm doing a decent job, and won't have to consider disability for a good while yet, I hope. I'm just hoping that the info on fish oils slowing down dyskinesia is true!

[stevem53]

This is just speculation, but your colds may be a side effect of the dextromethorphan. I know, ironic that a cough syrup might do that...:)

The reason I mention that is that one of the characteristics of PWP is that their immune systems are pretty good and we don't get colds, etc. The tradeoff, though, is that we are more prone to autoimmune problems.

Since we don't really know what the DM is doing, it is possible that your immune system is moving toward a normalized state of some sort. That's not necessarily a bad thing, just watch out for the flu.

How are you doing with the DM anyway? I may try it again. I found that my blood pressure problem was a dying cuff :o


Ive been wondering the same thing..:confused:

I have been very busy and pushing myself way too much between fishing and yard work..Because of that I havent been feeling the symptomatic reprieve that I was experiencing..Having said that..Maybe I would be far worse without the DM..I really dont know..I havent taken a day off and just hung around to re-group in weeks, and Im paying a big price..I dont have the stamina I had a year ago..Also Ive gotten in the habit of napping on the couch in the afternoon instead of the bed, and its not the way to go

[GregD]

Well, I guess I better get my experiences with agonist in here. In the beginning I was given Requip. Not wanting to use Sinemet until I had too. For the first couple of days the Requip did a fair job of controlling my symptoms. On the third day, my wife could not get me awake for work. When I did finally rouse around of course it was time for my next dose of Requip. Within 20 minutes I was out cold. Not wanting to panic we decided to take a few days and record exactly what was happening. What dosage, what time, and affects.
At this time I was seeing an MDS at the Cleveland Clinic. I faxed him the information we had recorded. He told me to continue on as prescribed. These problems would go away as my body became used to the drug. I fought through it for another six weeks. Nothing had changed. I took the pill and went to sleep within about a half hour. The MDS decided to stop the Requip and start Mirapex. At that time he told me that if the Mirapex did the same thing we would stop it immediately. As it was time for my medication while we were in his office, I took a Mirapex. With in a half hour I was asleep. Needless to say we walked out of the Cleveland Clinic that day with Sinemet.
I think the biggest lesson here is that if the prescribed drugs are not working for you, let your doctor know. I went back on several occasions to be tested to find out why I had such unusual reactions from both Requip and Mirapex. To my knowledge, they never found a cause.
It comes down to we are all different and the medication doesn’t work the same for all of us.

GregD