Tuesday, November 12, 2013

Neurontin for Everything – is it worth your life?


 



 
 Check out the class action suits!

Have you taken Neurontin (or gabapentin), too? I, like many other people with fibromyalgia and lupus, was prescribed this drug for pain. Luckily, it did not cause me to be suicidal. How about you? If you contemplated suicide while taking this drug, then listen up! There is a Canadian class action suit which may partially compensate for your pain but you just have until Dec 16th to file your claim.[1] There are many other serious side effects of this drug but this is the only one which has deemed to be compensable in this court action.  However, there are other class action suits going on in the US which may assist US residents.[2]




I just learned about this situation when I was reading an article about the billions of dollars in fines paid by Big Pharma for their fraudulent marketing of dangerous drugs.[3] I immediately sat up and paid attention because I was first prescribed Neurontin about a decade ago.  I was so over drugged during this period I can’t say exactly how long I took it.  I know I felt like I was drunk a lot of the time and eventually I only took it at night. I did experience known side effects like confusion, excessive sleepiness, abnormal eye movements, balance and coordination problems, depression, and anxiety [4] . But back then, my doctors thought these symptoms were all caused by a mystery disease like lupus!

The pharmaceutical manufacturer, Pfizer, never proved that this drug worked on pain caused by fibromyalgia or lupus. But this did not stop the company from promoting it for pain and almost a dozen conditions including ADHD, bipolar, restless leg syndrome, alcohol withdrawal....[5] Pfizer was so intent on making it a big seller that one of the sales managers told the pharmaceutical reps:

”we can’t wait for [physicians] to ask, we need [to] get out there and tell them up front. Dinner programs, CME programs and consultantships work great but don’t forget the one- on- one. That is where we need to be, holding their hand, whispering in their ears “ Neurontin for pain, Neurotin for monotherapy, Neurontin for bipolar and Neurontin for everything” [6]

Pfizer paid one doctor $308,000 to flog it at conferences; other doctors were paid to hear the spiel and some doctors were rewarded with trips to Florida and the Salt Lake Olympics.[7]

 
By 2004, the Department of Justice prosecuted Pfizer and they plead guilty to two counts of fraudently promoting Neurontin.[8] They paid $430,000,000 to reimburse federal and state government for the drug costs paid by them.[9] This was a small price to get this drug established. When the marketing strategy commenced in 1998 sales in the US were $98 M but by 2003 sales increased to $2.3 B in the United States.[10]

Their strategy continues to pay dividends. The FDA has only approved Neurontin for use in epilepsy and pain  from shingles (postherpetic neuralgia).[11] But this does not stop doctors from prescribing gabapentin (the generic name for Neurontin) for other conditions and the promotional material is still out there on the internet.
A search of WebMD brings up all kinds of off label uses for Neurontin like hot flashes, panic disorder, pain disorder, restless leg syndrome, migraines, MS etc.[12] Keep in mind, Neurontin is a drug that has killed people and has a black box danger warning from the FDA. Drugs.com indicates “it may also be used for other purposes not set out in this medication guide”. [13] Does that remind you of the Pfizer’s sale manager’s sales pitch - Neurontin for everything? If the pharmaceutical companies have proof this drug works for all of these other conditions, why have they never sought approval from the FDA? Did they have the evidence needed to get approval? Maybe they thought why bother when doctors have bought into the benefits of Neurontin for so many other purposes!
When a drug company hides the negative test results, doctors can not evaluate the merits of the medications. It took a court case in 2010 before Pfizer released all of their research trials. [14] Only then was an independent review of the studies done. Medical researchers at Therapeutics Initiative, working at the University of British Columbia, concluded that Neurontin reduced neuropathic pain by less than 1 on a scale of 1 to 10 in just 15% of the patients while 15% of the patients were harmed by the medication. [15]

 This type of review can’t be good for the pharmaceutical industry. Big Pharma is not accustom to an independent group scrutinizing their research and drugs. Thus it is not surprising to learn that the plug was pulled on this group earlier this year - especially since the pharmaceutical companies and pharmacies donated $600,000 to the BC Liberal Party over the last eight years. [17] That too (like the money spent on kickbacks to doctors) seemed like money well- spent by Big Pharma. However, an international lobby [18]embarrassed the government into reinstating the funding to this group a few weeks ago. [19]I’d call this one a minor victory for us little guys who swallow most drugs pushed our way!
In conclusion, if you have been harmed by this drug, look closely at the class action suits. And if you still take this drug and wonder why you feel the way you do, go to www.drugs.com [20]to see if you are experiencing side effects of Neurontin/gabapentin. Think long and hard before risking dementia or death, particularly, if your problem is hot flashes…. because it is your life!



[8] ibid
[9] ibid
[10] ibid
[15] ibid
[16]  ibid

 

Monday, July 29, 2013

MAKING THE MOST OF IT


I am still grieving the loss of my sister. It is all too fresh in my mind. After all, it is less than a week ago we interned her ashes beside my mother/father/brothers’ graves in the Qu’Appelle Valley on the prairies.

My kind neighbor came over to talk to me yesterday. She knows how angry I still am at how my sister was left to suffer needlessly and die after the care facility where she lived ignored her basic health needs. It goes without saying that the anguish I feel is causing my considerable stress and is putting my fragile health at risk.

Marg came to help me get past this. She listened to what I was doing to cope with my feelings. She shared some of her life experiences and in doing this she cautioned me to not getting into a negative trap which makes me constantly relive my pain. Marg explained that she believes in my capacity to be positive and to excel to beat life’s challenges. This wonderful lady is a great mentor because she has had similar health challenges and she has turned things around to help so many other people.

Anyway, I am lucky to have this caring friend who freely shares her love and wisdom. Yesterday she gave me something to think about and some encouragement about how to turn “lemons into lemonade”. Wise words from a wise woman! Probably I would get to this at some stage, but when you have lupus you have to try to get out of the negative as soon as possible.

She invited me to find my spark so I can leave my mark in this world. She encouraged me to think about what is important to me. Knowing what space I am in, she brought up the point about thinking how I would want to be remembered when I leave this world.

A little later, Marg came back with a book she had just finished reading. She brought “The Spark – a mother’s story of Nurturing Genius” written by Kristine Barnett for me to read. It was so enjoyable I devoured it in hours. This story is truly remarkable and totally inspirational. It is about how she found the spark in her autistic son who “the experts” said would never be able to even tie his shoes. This devoted mother (with lupus may I add) relied on her own intuition and found the way to unlock her son’s brilliant mind. Her son, Jacob, has a higher IQ than Albert Einstein and he has learned to relate to people and use his great gift to make advances in the fields of science and mathematics even though he is still a child. This mother not only touched her son but she reached out to the whole community of families dealing with autism in Indiana.

So exactly how did this amazing woman help her son live well with autism? You really need to read the book to find that out. One clue though is she focused on the positives and worked with what interested him. She encouraged him to play and experience nature. And she never gave up on him and believed the low expectations the “experts” had of him.

I found some of the passages of her book particularly illuminating for me. She believes that we need to experience life through our senses. She talked about how she coached a stressed- out parent to heal his spirit by following her recipe to calm his nerves one night, He was to fill his house with the aroma of rosemary and sage roasting in a chicken, wrap himself with a soft, warm blanket (heated in the dryer), listen to music he loved and sit for an hour quietly looking at a family photo album.

She writes:
“indulging the senses isn’t a luxury, but a necessity. We have to walk barefoot in the grass. We have to eat clean snow. We have to let warm sand run though our fingers. We have to lie on our backs and feel the sun on our faces.”

On a personal level, what does this book say to me? Well, it opens me up to the idea that exploring my senses will make my life more fulfilling and less stressful. It makes me think I can emulate her and not let anything (including lupus) hold me back. I, too, can identify my “spark” and ignite it. And I can strive to let my light shine by working with what I have and building on it. Yes, my life matters!

Friday, July 12, 2013

SKIN CANCER AND LUPUS


LUPUS AND SKIN CANCER

What does skin cancer have to do with lupus? Well, people with lupus are more prone to skin cancer or at least those ones who take immunosuppressant drugs. It is a fact that cyclophosphamide (Cytoxan) and azathioprine (Imuran) cause skin cancer. I have accepted this as the price of doing business (ie treating my organ threatening lupus). I have taken these chemo therapy drugs for the last 9 years and I have just had my sixth basal skin cancer lesion removed from my skin. Maybe my light skin and hazel green eyes make me more susceptible to this affliction but then my childhood days at the beach in sunny Saskatchewan probably have also played a part.

And my family history could have some bearing on it. Three out of seven immediate family members have also had skin cancer. It is worth noting that when one member of a family gets skin cancer, the other members of the immediate family are advised to also get checked out.

I consider myself lucky that I have only got basal cell skin cancer. It is the relatively benign kind of skin cancer which is usually confined to the outer layers of the skin if caught early. It is not as serious as squamous skin cancer which can spread if it is not caught in time. However, I had a friend who was not treated in a timely manner and he died from it squamous skin cancer last fall.

And then there is the most serious kind of skin cancer, that is, melanoma, which definitely needs to be removed early because it goes spread internally and does kill people. I know four people who have had that type of skin cancer and because it was caught early they are still alive and well. However, melanoma skin cancer kills one person every minute in the US and the incidence of it is increasing.

Any kind of skin cancer can be disfiguring. Again I am lucky in this regard because the two instances of skin cancer on my face have been handled by a plastic surgeon that specializes in the Mohs method. There are not that many doctors who specialize in this kind of surgery and I was fortunate to be referred to the Skin Care Clinic at the Vancouver General Hospital where some of the pioneers in the field work. Thus I have escaped, so far, relatively unscathed.
Here is a picture of the  wound on my shin. It is quite the gash! The size of this cut surprised me but I have been assured that was what was needed to:

 a) remove the tumor and the adjacent area around it

 and b) leave me with the least obvious scar.

As the plastic surgeon explained, the incision needs to be 3 times as long as the widest section of the tissue removed. He is taking the tumor plus healthy looking tissue bordering it. Thus the spot that I had removed from my shin that looked like the size of a pencil eraser, has left me with a 5 stitches and a scar 2.3 inches long.

Now if I earned my livelihood from modeling pantyhose I am sure they would have elected to do the Mohs method to remove the cancer. In this case, I would have had a lot more invisible stitches and probably a less visible scar. But there are no guarantees with scars, because everyone heals differently. The conventional wisdom is that people with lupus heal more slowly or at least for incisions above the waist (according to my last plastic surgeon).

 This is really no big deal at my age. I wear my scars as a warning to others to take care of their skin. And every time I see my young nephew, the one who balks at wearing sun screen, I trot out my portfolio of scars to serve as a reminder to not follow in my footsteps.

So how has this changed my behavior? Well, I cover up with a long sleeve shirt, a floppy hat, and wear 100% Neutrogena sunscreen on my face and a lower number on other exposed skin. I have to say that in the summer I like to wear tennis skirts when I play tennis but I guess that is going to have to change too. There is nothing like a new scar to hide, in order to make me cover up.

And I have recently read that certain foods including coffee, fish, beans, carrots, Vitamin C and beta carotene may protect people from getting skin cancer. Now I am going to make a point of eating more of these foods. Unfortunately though, I damaged my skin a long time ago. Thus even these protective measures do not guarantee that I will not get more skin cancer. For this reason, I need to see my dermatologist once a year for skin cancer checks. And if I recognize any more lesions between checkups then I will be in to see him as soon as possible.

The people with lupus in the crowd are probably questioning my sanity in going out in the sun at all these days. Even those lupus sufferers, who are not photosensitive, are not supposed to be hanging out in the sun. The doctors will tell you any exposure to sun light affects the immune system and increases the risk of a lupus flare. So I am more cautious and don’t suntan or stay out in the midday sunshine. But feeling the warmth of the sun and being in bright light makes my life worth living so I am not going to live in a cave for the rest of my life.


http://umm.edu/health/medical/altmed/condition/skin-cancer

 

 

Saturday, April 6, 2013

Magnesium glycinate cures depression

My short term memory problems, difficulties concentrating, slowed thinking, confusion, mental fatigue and trouble speaking have almost completely  disappeared since I went off of antidepressants and starting taking magnesium bis-glycinate 200 supplements.
As I said in my last blog, weaning off of prescription drugs was a slow process and it was an adjustment. However, my salvation during this whole process has been taking magnesium supplements. I have taken 200 mgs of magnesium once or twice a day for the last 3 months. I was able to purchase this CanPrev products from Nutraways on Lonsdale Avenue in North Vancouver and found this type of magnesium at Choices Market. Note the type of magnesium is critical to absorption.

As promised, I plan to write further blogs to provide you with the literature about antidepressants and natural alternatives. These blogs will come in time. In the meantime, be sure to read this short abstract published by the U.S. National Institute of Health. It will alert you to the reason depression is so widespread in North America. And you will learn that I am not alone in receiving substantial benefit from magnesium. http://www.ncbi.nlm.nih.gov/pubmed/16542786

Thursday, April 4, 2013

DRUGS CAN CAUSE CNS LUPUS-LIKE SYMPTOMS


WAS THIS AN UNIQUE STORY?

Not at all!

While I think my experience has been unusual, I know that it is not unique.

My recent google search for CNS lupus symptoms brought me to the Lupus Foundation of America website. The headline read “drugs used to treat lupus can cause side effects that are similar to the symptoms of CNS lupus.” It encourages people to consult with a neurologist who can determine if the drugs rather than lupus could be the cause of the problems.

 DRUGS THAT CAN CAUSE CNS LUPUS-LIKE SYMPTOMS

NSAIDS (non- steroidal anti-inflammatory drugs)
Celebrex, ibuprofen, and naproxen
 
Antimalarial drugs           
 
plaquenil and hydroxycholoroquine
 
Corticosteroids
Prednisone
 
Hypertensive drugs
blood pressure medications like beta blockers


Most surprising is that antidepressant drugs are not included in their list. I think this is an oversight.

But I am not naïve. I have to say that I have excellent doctors - they are world renowned doctors at the top of their fields.  My neurologist is a graduate of the Harvard University. And if he missed this, then most other doctors are also probably not aware of the side effects of antidepressants.
Perhaps doctors are in the dark because pharmaceutical companies do not publicize the problems with their cash cows?

I have done a lot of reading about antidepressants recently. There is considerable evidence about how ineffective these drugs are and just how harmful they can be. Certainly, my story demonstrates this.

My upcoming blogs are going to focus on the research which calls into question the effectiveness of antidepressants. I know you will be shocked to learn that antidepressants actually increase the risk of suicide. 
After that, I am going to share information about better, more natural ways that have helped me deal with symptoms of depression. 

 

ANTIDEPRESSANTS CAUSED MY ZOMBIE STATE

This blog explains why I had a serious reaction to taking antidepressants as described in my last blog, the Wakeup Call.

When I researched the internet and reviewed my cocktail of drugs, I realized that taking three drugs for depression at one time could cause serious problems.  I was taking Prozac and Trazodone at the same time. I was also taking clonazepam at bedtime for sleep. Although I did not realize it at the time this was the drug I needed to calm me from the side effects of the antidepressants.

The literature stated that there is a serious drug interaction between Trazodone and Prozac. http://www.drugs.com/drug-interactions/prozac-with-trazodone-1115-648-2228-0.html

The doctors and the pharmacists I have talked to seem to know this but they don’t really believe it. I have interviewed many pharmacists since I decided to gather information about antidepressants. Unfortunately, it seems rather common place to prescribe both of these drugs together.
There seems to be a lack of awareness of the effect of serotonin syndrome.  This condition occurs when there is too much of the neurotransmitter serotonin and in its most serious form it can lead to death. (Coincidentally, one of the treatments for this condition is taking a sedative like clonazepam so I guess it was lucky that I was taking this medication at the same time). Some of the symptoms of this syndrome which I have experienced include confusion, hypomania (slow thinking), tremor, muscle spasms, uncoordinated movement, high heart rate and high blood pressure.

As I have written in my previous blogs, I have almost stopped taking all antidepressants. Now I only take one quarter of the previous dose of trazodone and I plan to stop it completely soon.  With my oldest sister being critically ill, I have continued this drug as a crutch to deal with a high stress level and to help me sleep at night. I was originally prescribed this drug by the University of British Columbia Sleep Clinic to control periodic limb movement which affects my sleep at night.
In the last week, though I have been able to get back to playing tennis and I probably don’t need the drug to sleep at night.  I have also stopped taking the low dose of clonazepam which helped me to get to sleep quickly.

Getting off antidepressants after about 15 years has been a challenge! I have gone through withdrawal. I have felt moody, unwell, muscle pain, experienced panic reactions and had some trouble sleeping. I gradually stopped taking the medication over a few months. I had to set my own schedule because this is not something that any doctor was recommending.

Natural alternatives such as magnesium, and vitamin B6 are helping me to prevent depression. I am able to experience my emotions rather than just feeling numb. I have escaped the zombie state and I am thrilled!

THE WAKEUP CALL


As I said in my last blog, I was really close to being prescribed another drug for my worsening CNS symptoms. And then I had a serious reaction to wellbutrin. It was a wakeup call!
I doubt I would have stopped antidepressants and regained my mind if I had not gone through the experience of feeling suicidal. This feeling set off alarm bells in my head.  It happened on a weekend so I was left to my own devices. This is good because it is unlikely I would have got answers from my doctors or pharmacists.
 I got on the internet and found out that the drug could be causing the symptoms – suicidal thoughts, confusion, short term memory problems, and the lack of coordination. I also learned that someone with a family history of bipolar should not have been prescribed the drug.
This shocked me to the core! I then realized that I had to verify everything to do with my healthcare. I started to look at all of the prescriptions I was taking.  It was easy to find relevant prescription drug information on the internet and I would highly recommen
d visiting www.drugs.com and the US government website www.fda.gov/drugs.  I could not believe that the doctors and pharmacists did not know this information. The individual drug interactions are known. Out of 8 drugs, I had 5 serious drug interactions going on. But this is a whole other story for another blog.
It was my review of all of the drug interactions that altered my medication plan. One of my biggest risks of having CNS lupus (inflammation of the blood vessels in my brain) is having a stroke. One of the drugs I am taking is plavix which makes my blood less sticky and less likely to cause a blood clot.  Can you imagine my dismay when I found out that this drug has been rendered useless because I was also taking Prozac, an anti-depressant? Thousands of dollars down the drain over 8 years, unmitigated risk and not one professional pointed this out.

After bringing this to the attention of my doctors, they suggested that there was another antidepressant that I could take that would not interfere with the plavix. When I went to pick up the prescription from the pharmacist, he cautioned me to stop the Prozac for a period of 6 weeks before starting another antidepressant. I heeded his advice since I was not eager to repeat the suicidal idealization experience -besides this was going to be the third differenct antidepressant taken in just over 3 months.
About the same time, I spoke to a tennis friend who is a pharmacist. He said that I needed to stop taking most of the drugs in order to get over all of the drug interactions.  He said that normally someone is hospitalized and taken off all of the drugs. Then they are reintroduced say 2 rather than 8 medications.

Hospitalization was not an option. I knew I had to wean myself off of the antidepressants. It would have been best if I had received advice from a psychiatrist but I was several months away from being able to see one. I planned and executed my own withdrawal scheme. My experience of withdrawal is described in my next blog - Antidepressants Caused my Zombie State.

A DECADE OF FOG


A DECADE OF FOG

As I said in my last blog, I have just recently recovered from a decade in a fog. And I feel great!
Contrast this to a decade ago when I was a prescribed a serious overdose of antidepressants – more than enough to knock out even a depressed elephant. 60 mgs of Prozac and 150 mgs of trazadone  – all of this for a reasonably slender woman. The studies show that 20 mgs of Prozac treats most people with major depressive disorder. http://www.rxlist.com/prozac-drug/indications-dosage.htm.

The prescription was written to treat depression which could cause difficulty concentrating, and memory problems. It was believed that my cognitive problems could be caused by depression rather than CNS lupus. I never had symptoms of crying, loss of enjoyment of favourite activities, or sadness.  However, I was started on a cocktail of drugs that sent me into a downward spiral.  But then things got too complicated to be able to distinguish what was causing which symptoms.

 I had other difficulties like trouble speaking, clumsiness, confusion, fatigue, headaches, pain and sleeping 12 hours a day. And the numerous brain lesions showing on numerous MRIs proved that there was an inflammatory reaction going on within my brain. Thus it was not just depression that was causing the cognitive difficulties.
Over the last decade I slowly cut back on the antidepressants and my cognitive functioning started to improve. At the same time, I took chemotherapy drugs which stopped the development of new lesions on my brain. The drugs taken to combat my overactive immune system were credited with my improving health or, at least, no further deterioration.

But then my brain started to go on another downward trajectory last September. This happened when I replaced one antidepressants medication with another.  I started to take another anti-depressant called wellbutrin. It was billed as causing fewer sexual side effects and I had finally clued into ones sex life does not go on forever so I should pay more attention to it. Once again I was given too high a dose of antidepressants. I was prescribed three 100 mg of the slow release Wellbutrin to take once a day. According to all the published sources this exceeded the maximum dose at one time. Even 300 mgs spread out throughout the day was a dose that sets off a warning for US pharmacists.
As the fall progressed, I got worse. My short term memory was getting dangerously impaired. I could not keep track of who was serving in a tennis game, not to mention the score. When I could not recognize the host of a neighbourhood party a week later, I thought a room on the Alzheimer floor at the local care facility would soon be my new home. I fared very poorly playing brain games with my young nephew. But it was the neuropsychiatric assessment which proved my brain capacity was sliding when I performed worse than the previous test a few years before. 

At this point, my rheumatologist was evaluating whether to place me on a new drug to treat the worsening CNS lupus symptoms. Thankfully, he was being cautious since the new biologic drug, he had in mind, could be fatal. And he needed to line up the proof that I was still not better despite having taken cyclophosphamide, Imuran and methotrexate. He needed to complete paperwork to justify to the Medical Services Plan why I needed to receive this very expensive drug.

You probably have heard about the new biologic drugs available to treat people with autoimmune diseases.  You may have seen the television advertisements that list a zillion side effects and you conclude that someone must be desperate to even consider taking such a drug. Well, yes I was at this point. It seemed like it was either a new drug or soon I would be checking into my new home – one of the locked units for the demented patients at a care facility.

In November, my rheumatologist was waiting to hear from my neurologist. And my neurologist was waiting to hear from the psychiatrist who I had asked to see. However, this neurologist/psychiatrist specialist in CNS lupus was not accepting new patients. It then fell onto my family physician to make a referral to another psychiatrist. She said that it would take more than 6 months before I could get a referral.
Then the precipitating event happened. To find out more read the next blog – The Wakeup Call.