FIBROMYALGIA & SODIUM OXYBATE

Well I just had some good news regarding a FIBROMYALGIA HOSPITAL BEING BUILT?! (see bottom of page) I received this from a blog writer while I was looking up Sodium oxybate and it efficacy for Fibromyalgia Syndrome.

It is a very, very sad state of affairs and I am not impressed at all at the way medicine is being handled either here or over in America. After an impressive clinical trials of Sodium oxybate that worked so well that pateients were balling tears over the relief the morons on the FDA panel did that which I absolutely hate, actually took these positive trials and said they were shit and not proof!

Why?

Because this drug can be used like a drug and has drug like effects on people?! ARe they for fecking real?! Lol, I have never heard anyone sound so bloody stupid in all my life! What is a moron like that doing on a board to decide what drugs get approved or not?!

If this is because of drugs “getting out there” then your doing something very wrong and to refuse patients like me who have a genuine need for it is wrong, based on the fact that it can be abused?!

Well give up and go home! We live in societies full of abusers and for all manner of reasons, many bad I know. But this is because society fails and you do not help it but leaving hundreds of thousands of pain sufferers in a living limbo like hell, and I am only speaking of one condition here!

Would you prefer that all drugs were just placebos?! Would would the of you then be? Why your salaries?!

Sometimes I see and hear such idiots in jobs of great responsibility sitting their like Lords of the manor giving a thumbs up or down like little Caesars after a gladiator fight!

Anyway, that was 2010 and lets hope they got caned big time stylee for that one?! It is approved here in the UK for Narcolepsy and this is shown on the NHS’ own site! As I stated this is very stupid situation because I get the daytime sleepyness on top of all the myriad list of other things besides! So you can get it if you have Narcolepsy symptoms that is classed as Narcolepsy but you cannot get it for Narcolepsy symptoms if your condition is called Fibromyalgia despite the fact it can help with up to around 200 symptoms, never counted them all and I have over half of those, that Fibromyalgia causes?!

Absolutely no common sense here whatsoever! Now for some links …

Link about Sodium oxybate and Fibromyalgia and its use for Narcolepsy …

http://www.medscape.com/viewarticle/747038

This one regarding Sodium oxybate being turned down by the FDA, in 2010, for use with Fibromyalgia and yet the page states that clinical trials were excellent and that a better drug for Fibromyalgia is sorely needed!

EXPERT OPINION:
Insomnia, fatigue and pain are important clinical FM symptoms that showed moderate improvements with SXB in several large, well-designed clinical trials. Because of the limited efficacy of currently available FM drugs additional treatment options are needed.

[Sodium oxybate] would provide a much-needed addition to presently available treatment options 

Despite its proven efficacy, SXB did not receive FDA approval for the management of FM in 2010, mostly because of concerns about abuse.

LINK:  http://www.ncbi.nlm.nih.gov/pubmed/21679091

Some interesting quotes which repeat basically what I have said and found with my discussion with Doctors …

The history of the study of FMS is punctuated by conflicting ideas about the characterization of the syndrome, the origin and extent of the myriad symptoms and ultimately the appropriate therapy for the condition.

In 1904 the term ‘fibrositis’ was coined for a group of painful disorders that did not meet the more formal criteria for such conditions as rheumatoid arthritis or osteoarthritis. There were schools of thought suggesting the pain was of psychopathological origin because there was no obvious physiological evidence for muscle and/or articular pathology.

In 1975 Moldofsky and colleagues reported a possible biological marker for FMS describing a ‘non-REM [rapid eye movement] sleep disturbance’ in patients with ‘fibrositis syndrome’ (see the section on ‘Fibromyalgia and sleep’) [Moldofsky et al. 1975]. Shortly thereafter, the term fibrositis was replaced by the current appellation: fibromyalgia.

A different kind of pharmacological agent, sodium oxybate (SXB), is described that is currently approved for the treatment of excessive daytime sleepiness and cataplexy in patients with narcolepsy.

LINK: http://www.medscape.com/viewarticle/747038 

Greater detail on the refusal of approval by the FDA and that it very strangely contrasted like night and day with the clinical tests … Note how it states that many sufferers broke down in tears at how Sodium oxybate helped with their Fibromyalgia, obviously having tried everything else?!

The panel’s vote contrasted with the FDA’s view of the data provided by Jazz, which included two studies measuring pain relief, and another study that tested its effectiveness as a sleep aid.
“The agency agrees that there is evidence of efficacy” for treating pain, said FDA statistician David Petullo, MS, who reviewed the studies. The FDA did not, however, accept Jazz’s claims that sodium oxybate had a positive effect on sleep.
In the public comment period, the majority of the speakers supported approval of the drug. Many of them had participated in the Jazz-run studies. They explained, often emotionally, how much they had benefited from sodium oxybate after failing to respond to any of the three drugs approved to treat fibromyalgia.

“When drugs like GHB get out there, we wish it hadn’t happened,” said Thomas Kosten, MD, a Baylor University professor of psychiatry and addiction.

LINK: http://www.webmd.com/fibromyalgia/news/20100820/fda-panel-rejects-xyrem-as-fibromyalgia-treatment

 

I was just informed by a fellow blog writer who also suffers from Fibromyalgia that there is a Fibromyalgia Hospital?! It is currently being built and 40 miles from Glasgow?! I seriously have to look into this.

How cool is that?!

 

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s