Remember Thalidimide? The Researcher knew then had to prove it? It took time. Its only a matter of time IHO until how oral L Dopa meds work gets fully understood. But whos going to fund this. Big Pharm? Why would they its one of their cash cows. So it takes individual people to join the dots, compile the evidence. If you think Big Pharm do lots of R&D read an insiders book

Im responding so that myths dont perpetuate but u have to do your own research.

This is from a PhD study going on

Background: Levodopa (L-DOPA) is the most widely used and effective treatment for Parkinson’s disease (PD). Many in vitro studies however have shown that L-DOPA is toxic to dopaminergic neurones and have raised concerns that L-DOPA could cause neurodegeneration and accelerate the progression of PD. Despite extensive research over the last three decades the toxicity of L-DOPA has never been completely understood

So what do you suggest we, who have been hoodwinked into taking this drug, do. Find a tall bridge somewhere?

I'm a skeptic when it comes to pharma, but you offer no solutions, just arguments.

Im not God. If your solutions are working then whats the issue?

If they are not then maybe you will follow any discussion that questions whats going on. Then again maybe not.

If you dont like the discussion change then, I say this repespectivly, just change channels. We all make choices right?

I choose to seek. Did you know Low dopamine levels inhibit seeking behaviour?



Jak

I grew up with someone with untreated PD, my understanding of her has changed immensely since I started to get symptoms that were similar, around fifteen years ago. It took seven year to get to diagnosis (wrong age, wrong size, wrong face, no tremor), I was by then shuffly, blanked-faced, sooo slow, sleepless, perseverant, and looked and was treated as though I was years older, hostile, and possibly unbalanced. I got passed around the various disciplines where nobody found anything wrong with me at all, until I wound up with a neuro who recognised PD and treated me.

The years since have given me back a life, I can smile, answer a phone, function, for some part of the day move the way I want, sleep..... I would not have had those years without l-dopa.

IT is imperfect, it does have serious problems, but I would not be without it. The fact is that those who try to come off it and do have PD have great difficulties precisely because they have PD, and their brains become starved of dopamine. That there is more to PD than dopa is not in question, it's something that still needs proper attention from those who are looking at the disease, rather than the treatments. Some would say it is addictive, some would say it damages the brain, but others like me say it has given them years that they would not have had otherwise. Untreated PD does not look good, unless you are fortunate enough to have one of the very benign varieties.

Insulin has problems, it is not a cure all, but ask a diabetic what he would do without it and see what he says. Same goes for l-dopa. Until they find a way of stopping this thing in it's tracks it is one of the things we can use as a lifeline, and even the doctors are now realizing that many of the problems with it come and came from indiscriminate prescribing done by people who do/did not understand the implications, using it like a hammer to crack an egg.......

I don't see the point of trying to demonize l-dopa, there are other much worse drugs prescribed for PD, but even they offer help for some..... all of them are imperfect, what would be perfect would be a cure, but as yet there are none of those on the horizon........

Lindy

I, too, would not exist without l-dopa, but I do think it is not used properly. For one thing, if it does do some damage in the course of doing some good, should we not be taking preventive measures such as antioxidants along with it?

For another, when we start ldopa we are cautioned to avoid protein, amino acids, some B vitamins, etc. These are the very things that the body uses to make its own supply. Since unused capacities tend to atrophy, taking that first tablet is a momentous decision that is not fully explained to us.

I believe that part of the problem comes from an unconscious view within the medical community that PD is an old folks disease and that if one can be kept functioning for 20 years, then some other ailment will solve the problem. That view breaks down quickly when one is a 30-year old looking at a tremorous hand.

We need (and are in the midst of) a complete reexamination of PD and even, as Dr. Langston suggested in his essay, may need to rename the mess and start over with open minds.

"For another, when we start ldopa we are cautioned to avoid protein, amino acids, some B vitamins, "

avoid taking simultaneously. not stop taking. aren't you describing a situation that has to be managed with many drugs, namely a drug to food and drug to drug interaction? like not eating grapefruit within a few hr of taking some meds?

aren't you just referring to disease management?

i'm not absolutely sure but i think the problem that i see for companies developing new pd drugs for YOPD'ers is the FDA won't approve them unless the work much better than the current industry standard. so a new dopamine agonist has to be better than mirapex or requip.
i was in a phase3 trial by PHARMACIA for a new agonist called sumanirole. in the entire county where seattle resides they FOUND 3 VOLUNTEERS. The 1st part you got sumanirole, placebo or requip. that progressed to the open labell trial where everyone got to dose up to an effective dose of sumanirole. my pd was very mild but the sum. worked for me with no side affects, in the 1st part i assumed i got requip because of the side affects. what happened? the trial was cancelled. no explanation. PHARMACIA had been bought out though. it's likely they could not prove a big enough improvement over requip. that's another problem with getting fda approval, the difficulty in measuringpd symptoms. no lab tests, for drugs treating symptoms it's all subjective. thus for small diffferences you need a lot of subjects, very tough to do.
neurologix implied that for their future phase3 gabba gene therapy trial the FDA might require them to go head to head with DBS. it took 3years to get phase2 results, the last of the 44 phase2 subjects was treated 8 months ago. imagine the difficulty of finding DBS candidates along with finding those that will risk brain surgery and gene therapy. quite a challenge even in a perfect research world.

blame the drug companies all you want. i think some blame goes towards the FDA, the fact that it's hard to find candidates for clinical trials because sinemet works so well and it's very difficult to stop taking your current meds to try something that might be better. i'm personally amazed at the amount of pd research going on right now. ldopa patch, azilect, rigotine patch, numerous phase 2 gene therapies, lots of phase1, improved DBS's, spinal cord stim., electromagnets. sure it could be better.

I also blame us for not getting our butts into clinical trials. However, there is some sort of obsession in having dopa naive PWP in trials- pharmas only want the mildest of PD manifestation in their trials. They clearly avoid mid-stage disease and advanced disease PWP- why do you think that is?

Further, why don't our PD orgs begin a newly diagnosed patient education campaign to recruit newbies for clinical research?

There are many more potential better treatments than dopa stimulation. One vastly undertargeted area is Acetylcholine antagonists and allosteric modulators. The latter by Addex has huge potential as it controls dyskinesias. If I am not mistaken these might still be tested against agonists because the purpose is to compare efficacy not simply to improve agonists already on the market. Does anyone know if treatments targeting other receptor points are tested differently? Or do they all have to be in the same treatment family?

Laura

That plus Laura's quote:
"Further, why don't our PD orgs begin a newly diagnosed patient education campaign to recruit newbies for clinical research?"

My reply: MJFF is currently recruiting patients for their Parkinson's Progression Markers Initiative (PPMI), a 5 year study to collect data that hopefully will discover biomarkers that can be tracked to objectively measure disease progression and be targeted for drug development. This should also go a long way in determining the nature of the disease itself. Read all about it here.

There are 18 sites worldwide; all are in the process of obtaining IRB approval, and will begin active recruitment within the next few weeks and months.

They are seeking newly diagnosed, along with PD-free controls, and will be mounting an education campaign to recruit newbies. MJFF is learning a lot about the business of clinical trial recruitment in general in this process, and, I believe, will be doing more of this kind of thing in the future.

MJFF is having a PPMI community education event in Seattle later this month at the University of Washington. Please PM me for more information.

There is no doubt in my mind that the greatest minds we know who research PD are well aware of the concerns raised in this forum regarding the reality of the disease itself. They understand that the failure of recent clinical drug trials may be the result of a participant pool that represents different diseases. I know that MJFF is listening to patients, and that many of the scientists are as well. We are no longer just whistling in the wind; keep posting and keep the discussions going!

Great, Jak. Welcome to our nerdy group of PD misfits. If you seek a real discussion on our limited choice in pharmaceutical treatments, then you may want to search the archives. We have pretty much exhausted them all. Our latest row was on Mirapex vs. Sinemet in a thread titled "The Agonist of Defeat"

Beyond that I am not sure what your purpose or intent is here. I find it odd that one would keep referring to the same "free" report on the insidious, pernicious levodopa in a forum where most people have had PD for a few years, if not decades. Clearly, most then here are on levodopa therapy. How does continually throwing an alternative treatment that requires one to be l-dopa free have any benefit for most here? There is a Young Onset forum at the National Parkinson Foundation site that might really benefit from your viewpoints. Quite honestly, this all seems mocking in nature to the many good folk here who no longer have the luxury of choosing to avoid levodopa for as long as possible. Most of the neuros in the US do not see their role in advising us on meds like this. Has your neuro had a frank discussion with you regarding when to start levodopa therapy?

Again, if you search the archives, you will see that there are people here who have participated in the recovery plan and they take <gasp> levodopa and mucuna pruriens (plant based levodopa). I really am not sure how anyone would be able to avoid dopamine replacement therapy if one does truly have PD. We may have dormant cells and we definitely have plastic brains, so some level of endogenous dopa production occurs in us, but not enough to keep up or overtake the disease, so if this were possible people would not be traveling to Germany for stem cell treatments or be here defending their need for levodopa to function.

You have stated several times over that levodopa is toxic. Check. We get that. In the spirit of moving along the discussion, what else do you want to say or know about this drug? All drugs are toxic at specific levels.

May I ask in the absence of any medication, what sort of plan you and your neuro have worked out? Silk pajamas to help you turn in bed at night, weighted utensils to help with tremor...is there are a plan or do you plan to wait and see what adaptations are needed?

We have a wealth of info available here.

Laura

Laura I work with Doctors all the time. I see pts on steroids for 15 years. I see the disease resulting from the suppressed immune systems of these pts as they keep on representing. One day in the future people will look back like we look back to the early 20 century and shake their heads at current standards. Its not that these Docs are trying to make more bussiness, its that even doing the best they can the results are poor. You can extrapolate that to any field in health.

They dont even know the cause of PD. Maybe dopamine depletion is the result of PD not the other way around.

Jak