Thursday, June 6, 2013

Things In The Dark

You know, I am hesitant to write what I know I must tonight. My research didn't take me where I had hoped it would. Those who know me know that when I research something, I do not stop until there is nothing left to find. I want the truth, the whole truth and nothing but the truth so help me God.
I thought, 'Hey, I think I'll research the four most common drugs used to treat fibro and let people know what they are good for.'
Doing the research was like walking into a dark cave, moving further and further from the light, listening to scaly things scratch the walls and feeling their hot breath on my neck right up until the floor disappeared and I was free falling in the cold blackness seeing the truth flash in my mind while listening to maniacal laughter. That is my uber dramatic way of saying that what I found scared the crap out of me.
I fully realize that this post is going to make some people mad. Try to keep in mind that I did not create the drugs or write the reports. I did the research that is out there for you to find too if you are so inclined. I hope that you are. Please don't just take my word for it. Go do the research for yourself especially if you are on one of these drugs. Reading the information for yourself will empower you and set you on the road to finding less toxic drugs to treat your chronic pain.
I'm going to start with Neurontin. Neurontin (Gabpentin) was FDA approved for nerve pain and seizure disorders. Nothing else. Ever. When fibromyalgia was taken off the orphan disease list (orphaned because not enough people had been diagnosed to make the disease profitable), Pfizer saw an opportunity to market it's newest drug, Neurontin as a treatment. This was never FDA approved and Pfizer was slapped with a fine for prescribing this medicine for off label uses. THEY PAID THE FINE. You see? Pay the fine and the drug doesn't get pulled from the market.
In December 2004, Neurontin's patent ran out which meant that Pfizers competitors could market a generic version. Now, by then, Neurontin had not only been shown ineffective after a three month period in fibro, but 14% of users had committed suicide. It didn't matter now because Pfizer had come out with Neurontins' successor LYRICA. Lyrica also began life as an anti-seizure drug. It was never meant to treat fibromyalgia. The side effects run from dizziness to death and about 30 side effects in between but once again, Pfizer prescribed this new drug for off label use (fibromyalgia and diabetic neuropathy). Whistleblowers went to the Department of Justice because patients once again, began dying. Pfizer signed a Corporate Integrity Agreement with the DOJ and paid the $2.3 Billion dollar fine and continued on their merry way, marketing Lyrica to FM patients. Lyrica is currently Pfizers biggest seller, bringing in over $3 Billion a year. Lyricas' patent runs out at the end of 2013. Expect Pfizer to come out with a new fibro drug.
Savella was FDA approved for fibromyalgia treatment on January 14, 2009. It was among the first fibromyalgia specific drugs (currently there are two) to hit the market. Europe approved the drug as an anti-depressant but refused to allow it to be used in fibromyalgia patients, claiming that the marginal benefits were far outweighed by the harm that the drug causes. As of January 20, 2013 in the U.S. a group of patients called The Public Citizen had filed a petition with the FDA to recall the drug along with a class action law suit claiming that Savella had caused irreparable damage in surviving patients and the deaths of loved ones. Both the outcome of the petition for recall and the law suit are still pending.  Savella helped marginally with fibro pain for three months but had a list of more than 40 side effects, the worst being that a full 20% of people taking Savella had sudden heart attacks and strokes, half of those resulting in sudden death. Even the FDA claims that aside from the side effects, more than 90% of users receive no benefit from the drug.
Cymbalta - As early as 1990, the FDA had received numerous reports that the drug caused suicidal thoughts in patients aged 18-25. Later, it was discovered that there is a statistically significant greater risk of death in those who had coronary artery disease while also using Cymbalta. Patients with CAD who remained on the drug for three years died at a rate of 21.4%. That's a huge number! Cymbalta was also shown to increase liver disease and liver failure. As a result, the FDA put the strongest warning that they have at their disposal on ALL of these drugs. The Black Box warning. A Black Box warning means that while the drug can still be sold, you take it at your own peril.
To be completely fair in my research, I also looked up the medication that I am prescribed through pain management. I found warnings that included; do not take this drug if you have more than one alcoholic drink per day. I also found many instances where patients did not follow dosing schedules and took large amounts of the drug to get high (some took as much as 70mg!) but even then, with stomach pumping and antidotal medications, those people did not die, though they did suffer liver damage due to the acetaminophen overdose.
I will not tell you what you can and can not take for your chronic pain. I am not here to judge anyone for what helps them and what doesn't. I do, however, want to encourage you to research this for yourself. All drugs are toxic to the body over time. These just happen to be even more toxic than others. When fibromyalgia came off the orphan list, there was a rush by the pharmaceutical companies to cash in even though they had not studied this disease enough to be able to treat it effectively. It was money first, patients later and it still is. There are legitimate scientists who have not jumped on the money train yet who are trying to unravel this disease. Help is coming. But for now, for me personally, I go old school with the tried and true drugs plus a healthy eating plan, exercise and time for me.
There is a book that I highly recommend for the newly diagnosed. Fibromyalgia and Chronic Myofascial Pain A Survival Manual by Devin Starlanyl and Mary Ellen Copeland. You can get it on both Amazon and ebay. It is chock full of symptoms and what to do for them by people who have fibro too. It has been especially helpful to me since I have both fibro and cmp.
I beg people to research everything their doctor says, every drug prescribed and the diseases they have been diagnosed with. I was pretty upset that this post didn't go the way I had hoped but I won't lie to you either. There are ways to handle this disease without harming ourselves further. I'm wishing you a pain free day. Now that I bummed out, I'm going to go look at grumpy cat pics for a while. I need something good to pull me back up.

No comments:

Post a Comment