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FDA will not allow us to have a chance at pain relief. I'm furious!!!!!!
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WomanInBath posted:
http://www.webmd.com/fibromyalgia/news/20100820/fda-panel-rejects-xyrem-as-fibromyalgia-treatment?src=RSS_PUBLIC

This link above has the down-low on their lame excuses.
I'm not saying that I don't understand that there is a chance that it may be abused....That can happen with any drug.
I would hate it if one person were takn advantage of......but to deny the chance/ hope/ dream for the rest of us to get our lives back....it just seems CRUSHING.

HOW DO YOU ALL FEEL ABOUT THIS??

Haven't we got enough frustration and pain.!!!!

My belief that is that the FDA is more concerned with $$$$ than with the actual good for the residents our country.
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wyldaeval responded:
When the FDA took the medication VIOXX off the market, I was devastated. I'd been taking VIOXX for a few months and it gave me a new lease on life. After the first couple of days I felt as if I'd gotten a new body. I'd been in the middle of a crippling flare and my feet had gotten so bad that I wasn't able to walk without assistance. I'd had to resort to crawling on my hands and knees a few times just to get to the bathroom. The relief I felt was so great that I would gladly have signed a waiver giving up any right to sue for complications from the medication just to be able to feel the relief I'd had again.

This time, I have to agree with the FDA's decision NOT to allow this drug to be available to us. There are too many risks involved with this particular drug. I'm currently unable to work, but my last job was in law enforcement. I know all too well that this drug, in the wrong hands, would be hazardous in the wrong hands. If five million people are suffering from fibromyalgia and had access to this drug, they wouldn't be the only people with access. The theft of drugs from private homes is more common than you'd think, allowing for the drug to make it to the street for misuse by others. I've seen too many people arrested for having prescription drugs that weren't theirs. The resale and abuse of narcotics is wide-spread, and this drug would be no different. It would be made available to the wrong people for a few bucks and then used to perpetrate unimaginable crimes. I don't want that on my conscience, especially for a drug that has no data to prove that it's MORE effective than what's already available to us. I'm unable to take many of the medications available for fibro due to allergies, but I don't want this drug to be made available. The risks are just too great.

Believe me, I understand the frustration in dealing with the pain firsthand, but there has to be a safer answer. Sodium oxybate is not the answer.
 
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Ameliamv2_9 responded:
I agree fully!!!! I live in Las Vegas and they have put so many doctors out of work and others have quit in fear. So it leaves us with even fewer options. I even had problems getting a referral to a pain management doctor. Because my doctor said they would just put me on narcotics, I think its in part because of my age im 22 so everyone assumes i just want to get high and im faking. So thanks a lot to those people that were just faking to get drugs now its a lot harder for those that actually do need them.
 
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WomanInBath replied to Ameliamv2_9's response:
When I moved, I could not get a new Doctor to take me as a patient because I was/am on narcotics.
So now, my specialist for Fibro IS my G.P.

They made me feel like a drug seeking Junkie! I saw 3 different Dr's who would not touch me with a 10 foot pole!!
Then I gave up, it was too humiliateting!

I dont see why this drug would be any different!
Of course, I dont want to see any drugs abused!!!

I dont know about you, but I want my life again!!!
I feel that if there's ANYTHING out there that may help,
I deserve the chance to try it.

Am I all alone on this?
 
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katmandulou responded:
My best response is this:
They effectively took Claritin-D off the OTC market when Congress (not the FDA) forced stores to keep it behind the pharmacy counter or at service desks because it can be used to create methamphetamine!

In order to buy it, you have to give the minimum-wage clerk some very personal information; most stores ask for far more than the law requires. So I stopped using it and just sniffle, snort and hack throughout mold season...

And you want the FDA to approve a drug? These days aspirin wouldn't be approved!
 
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annette030 responded:
I happen to agree with the FDA on this one. I belonged to another FMS board when the clinical trials were being done and some of the members were a part of the trials. There were no wonder cures or radically improved symptoms.

The problem with the abuse of this drug, is that it could be given to someone who is then raped. I have no problem if the person who is taking the drug by RX, or after stealing it, then chooses to abuse it, that is their decision and beyond my control. However, if an innocent third party ended up raped because someone stole my meds, I would be devastated. Just my opinion.

The trials on this drug did not show, in my opinion, that the drug was any kind of wonder treatment for FMS. I don't feel the risks are justified by the possible benefits for this drug.

I think in general the FDA is run by the drug companies for their own benefit rather than for the benefit of the people of this country. I am glad that in this case the drug use was denied.

Take care, Annette
 
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mischelle360 replied to annette030's response:
I feel the same way Annette. It would kill me if a third party got hurt because my med's got stolen.

And they Do get stolen all the time. My BIL was a exterminator and he just helped himself to this one woman's medicine cabinet that I am aware of.... and got caught.... Twice! Same house, same woman.

To be honest, there is no telling how many others he had done the same way. He just happened to get caught red handed at this one house and the second time caught on tape doing so.

Yes he is in Big Trouble!

The whole family was floored.... But stuff like this happens all to often for it not to be a concern.

Everyone should keep their meds put up and under lock and key when or if you have others in your house. Esp exterminators and such.
 
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An_199322 replied to katmandulou's response:
I really don't get bothered by having to show my DL for the Claritan D. If people want to steal any information all they have to do is walk by your mail box and get your mail. Identy is so easy to steal.


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