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Topic Hopefully We've Learned Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2012.02.26 13:33
In light of the recent postings on the supplements and pharmaceutical fronts I've posted this here, so as to not steal any thunder or dash any hopes. Sometimes I post and it seems or can be read I'm being a naysayer or discouraging interest. I'm really not, or at least that's not my intention. What I try to do is temper the news with a dose of caution.

Now to the heading of this post, "Hopefully We've learned". I'm addressing the Citicoline, a supplement. Several years ago CQ10 also a supplement was thought to have the same effect for P.D. things seemed good with it even claims of delaying progression. When a small study showed promise (the study was only about 30 subjects). When this news broke it was all over the media. What wasn't all over the media was along with the release the scientific community asked (then afterward pleaded) people refrain from rushing out and buying CQ10. Much larger and more in depth studies needed to be conducted. They explained in order to conduct these studies participants had to never tried CQ10 before. However a plethora of people rushed out to get it thereby reducing the supply of test subjects to so few these studies were rendered nil.

At the time of that release I pleaded online and in various settings for people to refrain from the rush to try CQ10. I pleaded for them to let science do the work, conduct the tests to find out if the claims were correct and it was going to help Us. The majority ignored mine and others pleas and ended up shooting Themselves and Us in the foot killing the research.

Now again another hope arises, please let science do the work, please watch this development, pray for it's being beneficial, keep your fingers crossed for some proof. Update Us and each other on any news from this front, but please keep in mind the CQ10. It didn't matter to the makes of it CQ10 sold off the shelves as quick as they could stock it with people hoping it would make a difference in Their or Their loved one's life. Who it did matter to was Us the consumers who it might have been proven to help. Us the Patients who through the media pressed for their precious time to squeeze in more scandalous behavior from a celebrity or sports star, didn't see fit to include in the story an extra few seconds to relate the researchers plea to refrain rushing out to try it so they could conduct better and more thorough studies. Hopefully We've leaned, time will tell, the jury is still out on this one. Take care, best of luck and hang in there!

By karolinakitty On 2012.02.26 14:13
I have to say that if we go out and just get the next available whatever drug, it does a disservice to the research community. Continuing education and research could take a new drug one step further than when it first came out....

If they would have done, for example, more research on drugs like Requip and Mirapex, maybe, just maybe something could have been added or deleted to make this drug work effectively and not have the awful side effects they do have.

It's kinda like the Window products, you don't go out and buy say.. Windows 7 and replace your Vista until you know they have all the bugs worked out. It seems in the pharm community they put it out there ...then all of a sudden there are those pesky commercials with an attorney spokesperson asking if you've had (insert side effect) while taking (insert drug) then you may have a claim!!!!!!

Patience is something we Americans are lax in and pushing drugs that have more side effects then the disease itself just doesn't make sense to me...

By susger8 On 2012.02.27 07:50
I'm not defending Requip/Mirapex, but I would like to say that it's always a difficult balance for a company bringing out a new drug. On the one hand, the longer you study the drug before submitting it to the FDA for approval, the more you will learn (good and bad). On the other hand, a delay means that people have to wait longer to be able to get a drug that might benefit them.

Drugs do have side effects. The important thing for the patient, and the doctor, is to examine whether the benefits outweigh the risks. Both risks and benefits vary from person to person -- so one invidual may do fine on Mirapex, while the next has intolerable symptoms. You could protect patients by taking all drugs with side effects off the market -- but then you would have no drugs on the market, and no treatments for people who need them.

Disclaimer: I work for a drug company as many of you know, so I admit to being biased.


By parkinit On 2012.03.01 10:38
Lo -
I posted that for others, who in my position, with a PWP in latter/final stages, have exhausted all prescription meds and, frankly, we are grabbing at ANY HOPE, anything to stop this train. So, I understand your perspective, but please understand mine, as well.

If there is even a hint of possible alleviation from this horrible illness, at this point, and we've had to reach "this point" before we do this - we're going to jump on any train that looks like it is going in the right direction for us.

I hear your warnings, but I will not heed them. That is my choice as well. I want to continue to have hope for my spouse.

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