Fibromyalgia and Xyrem: From an expert

[Guest guest]

Trinka Porrata, at my request, took the time to post information about Xyrem on

another

forum. The reason I asked her for this is becasue the National Fibromyalgia

Association

has recently publicized positive articles on Xyrem as the 'miracle drug' for

fibro sufferers.

I know many women with implants suffer from fibro (as I do), and I want to get

the word

out to everyone I possibly can, about this drug. I was prescribed Xyrem, and

had a

horrible experience with it - which is why I did some research and found Trinka.

Here are her comments on this drug:

===============

I deal with the drug gamma hydroxy butyrate (GHB) every day and I have now for

ten years.

I work with families who have lost a child to this drug, people of all ages who

have become

addicted to it and people who have been slipped GHB in order to rape or rob them

(male

and female). I also work with all of the top doctors and researchers who are

involved in

GHB issues. I testified, along with several of those doctors, in the FDA hearing

on the drug

product called Xyrem, which is GHB. I pleaded with them not to approve this

drug, to keep

it in the research stage where those people with the limited condition of

combined

narcolepsy and cataplexy could still access it but no one else. Our second

choice was that,

if approved, it should be restricted from off-label use. You see, once a drug is

approved,

the drug company can only advertise it for the condition or disease for which it

was

approved, BUT, under the off-label use policy, ANY doctor can use it for ANY

condition

even without any data to show that it is safe or useful for that condition.

Well, amazingly,

even the FDA's own evaluation committee agreed with us, saying that if any drug

should

be exempt from the off-label use policy, this was the one! But, since the

narcolepsy/

cataplexy field is so tiny (about 50,000), the drug company could not possibly

survive

financially with such a small population, given that not a huge percentage of

them are

interested in this drug. So, the drug company couldn't advertise for anything

else, but

skirted the issue by ALWAYS including in their press releases comments like,

Xyrem is

being researched for use with fibromyalgia, etc.). And their field reps don't

limit their visits

to narcolepsy/cataplexy doctors. They go to any doc they can reach and preach

about

Xyrem with comments like, " in case you want to use it for anything. "

This is a frightening drug. Let me put it this way.....If I woke up tomorrow

with narcolepsy/

cataplexy (and I do realize what a debilitating and frustrating disease that

is), I would

NEVER consider taking GHB, not for one second. I know too much about this drug.

The drug company claims that GHB is not addictive to narc/cat patients and that

they

suffer no withdrawal syndrome if they stop taking it. I'm not at all sure I

believe that, and I

KNOW that it is indeed addictive to all others. And it is especially

devastatingly risky to

anyone with prior addiction issues or mental health issues. Oh, and not good for

people

with sleep apnea either as it can suppress respiration.

People with narc/cat may be willing to live with the side effects (urinating on

oneself,

sleepwalking, loud snoring, etc.) in exchange for the reduced cataplexy attacks

during the

day. But for someone who does not have cataplexy, GHB use can (especially at

recreation—

abuse—levels) give the symptoms of cataplexy, albeit temporary. Our video tapes

of GHB

users are amazingly similar to the ones shown at the hearings of cataplexy

patients. The

FDA allowed the drug company to show their videos. We were not allowed to show

ours of

GHB addicts/abusers twitching and jerking, falling around, in a catatonic state,

etc. No one

wanted to see the reality of its use.

People on GHB may not be able to be awakened in emergencies, may not hear their

pager

or their child cry or a fire alarm, etc.

People can easily, easily die from GHB use and no one can predict who it will

kill. It is very

dose sensitive and very risky. I have personally tracked more than 300 GHB

related deaths,

about one third of them from GHB alone (no alcohol or other drugs involved). The

FDA

refuses to even look at those deaths or track them themselves. DEA stopped

counting at

71, once we got the legislation passed making it illegal (other than the

prescribed

product). I'm currently working with Dr. Deborah Zvosec in Minnesota on a death

case

review. She will be reviewing more than 200 of the clear cut GHB deaths we have

been able

to obtain. We will later address the more complicated deaths where GHB is known

to have

been consumed but the person, for example, may have lived at death's door long

enough

for it to clear from the blood but still died from it and thus no toxicology

evidence to

prove it. And, we will also later address the many suicides we've seen in people

trying to

get off of GHB. Even the clinical trials had suicide and attempted suicide

issues, but it was

kissed off as unrelated. I run a GHB addiction helpline via www.projectghb.org

and have

worked with more than 1500 GHB addicts in 15 countries and I KNOW the suicide is

related to coming off of this drug. It is the single worst drug detox in the

world. Most drug

detoxes are three to five days. I am talking about 10-14 day, intensive care,

sedated

heavily and often in restraints. You can actually die from the withdrawal

process and we

have a few cases of it.

At first GHB seems to be an anti-depressant. Well, so is a little alcohol in a

way…..at a low

level and temporarily. So, it is touted as an anti-depressant and even an

anti-aging

substance. Thus we have seniors and mental health patients being given GHB with

horrific

results down the road.

Xyrem patients have been coming to our website for help. Their doctors, who

typically only

know what the drug company has told them, preach that this is a wonder drug and

they

hesitate to complain to them. Believe me, anyone on it with problems needs to

demand

that the doctor listen to their experiences and should also report it to the FDA

Medwatch

online. Anyone with prior addiction issues is extremely likely to begin abusing

this drug; it

will just slip up on you.

I know, they claim it is so carefully dispensed. Baloney. I know people who

started abusing

it to the point that their three-week dose lasted only one week. They'd just

spend the next

two weeks shaking hard, drinking alcohol and/or other drugs (so easy to get

Xanax or

other benzos from anywhere these days) until their next Xyrem package arrives.

I am horrified that Xyrem is being pushed on fibromyalgia patients. It is a high

risk

experiment and you are their lab rats!!! Their research for narc/cat was quite

shallow and

they have even less on other conditions as to safety and efficacy.

This society is so heavily medicated in general that I find it frightening. I

KNOW that drugs

have their place, but it is too easy, especially for those with ongoing pain

issues, mental

health issues, substance abuse histories, etc., to slip into multiple drug use

with

overlapping negative side effects and interactions. Be careful. Be safe!!!