Patients Deserve to Know the Truth about Cymbalta

By Crystal Lindell, Columnist

Look, yes, Cymbalta probably saved my life. But it also sucks. So, I’m not surprised people are suing Eli Lilly, the makers of the drug. 

I can still remember talking to a nurse over the phone at the Mayo Clinic’s pain rehab program when she mentioned Cymbalta. It was the same pain program my insurance company would eventually deny, prompting the Mayo Clinic to ask for $35,000 up-front, and prompting me to laugh in their faces and instead buy a $7 Yoga DVD at Best Buy and hope for the best. 

Anyway, yeah, the nurse. She was all, “Oh! Cymbalta is a WONDERFUL drug! So many people love it! And it works so well! That’s a great drug to go on when you go off opioids!”  

But all I could think was, “Obviously you have never been on Cymbalta or opioids or had chronic pain, because Cymbalta sucks.”

I always tell people I was tricked into starting the drug. 

My doctor, whom I really do love, put me on it about a year and a half ago. He brought it up at my first appointment with him -- the same appointment I also decided to confess that I was having suicidal thoughts daily. He told me he was putting me on Cymbalta because it had been shown to help with pain. I’d later find out that was only half the reason. 

When I went to a follow-up appointment, the doctor asked if  Cymbalta had helped with my pain at all. And because my pain is stronger than the U.S. military, it hadn’t. But, then came the reveal. 

“Well, how’s your mood?” he asked, slowly.  

“Actually, better,” I replied, realizing that had been his secret plan all along. 

But you know what? I can sincerely tell you that I didn’t want to kill myself anymore. I mean, I still thought about it, but the drug had sort of diluted the thoughts, and made them less of a legitimate option and more of a fleeting idea I had in passing. 

And I totally get why my doctor did what he did. Because when someone is suicidal, it just makes sense that staying alive is the one and only goal. So, in the beginning I was fine with whatever worked — and it just so happened that Cymbalta is what worked for me. 

Until it didn’t. 

Cymbalta was able to keep the suicidal thoughts away, but it also kept a lot of other thoughts away too. Like my creative thoughts, my writing thoughts and, honestly, my sex thoughts. The drug straight up slaughtered my sex drive.  

It also made me so tired. Like, sleep-for-16-hours-a-day tired. Yes, it had help from all the other drugs I’m on, but I can clearly tell you that the fatigue is worse than it was before I started taking Cymbalta.

So, a couple months ago I tried to go off it. I chose the only method I knew and cut it out cold turkey. Within just two days, my writing voice came back like the great flood. And I was getting turned on by my boyfriend again. I even got to see and understand 8 a.m. again for the first time in like a year. 

All was well with the world. Except when suddenly it wasn’t. Because Oh. My. God. The withdrawal symptoms from Cymbalta were hell. 

Less than a week after my last pill, I was getting so dizzy that I seriously thought I had a new disease. Then, there was this thing called the brain zaps, that I didn’t understand until they happened to me. In short, it literally felt like my brain was being, well, zapped by electricity. 

There was also nausea and vertigo and just an overall feeling of falling off a skyscraper. 

I can honestly tell you that going off Cymbalta was worse than going off any opioid I’ve ever been on. At least with opioids it only takes like 18 hours to get out of your system, and when it’s over, it’s over. Cymbalta lingered. It took it’s time with me. It gradually poured on the withdrawal symptoms in a tortuous piling on. 

So, a week after I went off it, I went back on it.

Apparently though, I’m not the only one staring down at a lifetime of daily Cymbalta doses. According to the Internet, (always a reliable source) there’s a possible class action lawsuit being brought against Eli Lilly.

“Studies show that between 50% and 78% of Cymbalta users experience antidepressant withdrawal symptoms after discontinuing the drug. Yet the drug label misleadingly states that Cymbalta withdrawal symptoms occur in only 1% to 2% of cases,” claims attorney Steven D. Gacovino.

You can read more about it here.

Now, I literally have no idea how legit this whole thing is. Can you really fill out a form on a random website and be part of  a class action lawsuit? I have no idea. But I can tell you that I totally submitted the form. 

If nothing else, doctors should be telling their patients about this. They should have a conversation that goes something along the lines of, “Hey, this drug might quell your suicidal thoughts, but you’re never going to be able to go off of it. I mean, you will, but it will be hell. You’ll probably get vertigo and brain zaps and you may not be able to stand up without falling over. Also, there’s no telling how long those withdrawal symptoms are going to last.”

If nothing else, patients deserve to know the truth. I deserved to know the truth.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: Is Chronic Pain One Disease or Many?

By Carol Levy, Columnist

When someone asks to join the online chronic pain support group I administer, they are asked what brings them to the group. Most often the reply is along the lines of, "I have fibro, CRPS, neuropathies, migraines, spinal issues, etc." 

The naming is usually long, and sad to read. 

Even after doing this for many years it still surprises me when the reply is a laundry list of diagnoses.

It is silly for me to continue to be taken aback. It is the very rare person who names only one illness. 

There has been a lot of discussion surrounding the issue of childhood trauma and abuse as being a progenitor for chronic pain. I have my arguments with that theory. I also wonder if we lose sight of other possible originators of chronic pain disorders in our, and the research community's, willingness to hop on the “abuse as cause” train. 　

I googled, "Chronic pain patients have multiple chronic pain disorders. Why?" The search came up with a number of websites for treatment, but nothing about research that addresses the question. Is there a biological reason, a chemical cause, or maybe genetic issues that cause a body to develop these combinations of diseases?

Often people with cancer in one part of the body see it metastasize to other areas.  My simplistic understanding is that a cancer cell gets loose and travels, spreading the disease.

Diabetics have the risk of eye and skin complications, kidney disease, neuropathy and other problems as a direct result of the diabetes, even when they have been managing the illness very well. The diabetes itself is the trigger for the body processes that cause the side effects. 

Is there a similar mechanism in chronic pain disorders? Does the presence of one condition set off a process that allows other pain disorders to take root? Does the body lose some of its defenses or ability to fight off other pain disorders? 

I am not a medical person. I have no idea if this is nothing more than the personal woolgathering thoughts of someone who thinks we, as a group, are in desperate need of answers.

We already clamor for more research into treatments for our pain. We need to also send out a clarion call for more research into what causes these disorders. This call needs to include looking outside of the box, maybe seeing chronic pain illnesses as a cluster of ailments rather than individual disorders that are distinct and separate from one another. 

We need researchers who can see past a name, who can look at chronic pain and ask the opposite of the Sesame Street song “One of These Things (Is Not Like The Others).”

All of these things are like the others, but what about these things are all the same?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How to be Healthy When You're Sick

By Crystal Lindell, Columnist

I’m trying to find ways to be healthy despite the fact that I constantly feel like I’m dying.

Having chronic pain is like waking up every single day feeling like you’ve just been mugged, then hit by a semi-truck, and simultaneously come into contact with the plague.

And when it first hits you, you’re like, “I can’t be expected to function under these conditions. Nobody could function under these conditions. I must call in sick to life.”

But after a month of laying on the couch watching every episode of Burn Notice three times, you suddenly realize you’re probably not going to be getting better any time soon, so maybe you should try to, you know, shower or something.

That’s where the drugs come in. And suddenly, you wake up one day and you’re literally taking six different medications before you even get out of bed in the morning. But hey! At least you’re getting out of bed.

And over the next few months or years or whatever it takes for you, you just sort of live in this drugged-up state of barely existing. It’s how I would imagine high school pot heads hope their life turns out, except without all the stupid stabbing pain in my ribs (or wherever yours may be). 

Aside from being high daily, you find all the shortcuts you can. For me, I ended up working from home. I moved in with my mom because doing my own laundry and washing my own dishes is literally too difficult. I shower once a week to save my energy. I shop online. And I never, ever, ever wear high heels. Ever!

On one level, I’m just happy that I’m no longer in so much pain that I literally hope I don’t wake up alive in the morning. But on another, I don’t really like what I see when I look down the long, dark road that’s probably going to be my life for, what? Another 50? Or even 60 years if I’m terribly unlucky?

Which brings me to the yoga. Yes, it’s true. I have started doing yoga. I’m hoping this is the next stage in the chronic pain life cycle, which will be followed quickly by, “Find a cure, and live happily ever after.”

While I’m here though, barely living, I figure I might as well get really good at downward dog. I started with a 30-minute PM yoga session for beginners on DVD. The hardest part is when I had to take two deep breaths in a plank pose. And, guess what? It didn’t suck.

I mean, I can admit when I’m wrong. And I was totally wrong about yoga. I really, really thought that bending my body in new, crazy ways would only make things worse. It’s just the human intuition in me, saying, “You’re in pain, stop doing stuff.” But, with chronic pain, you have to learn to override that voice.

And so, I’ve even done the 30-minute AM session, and I didn’t even die from that either. Plus, I also found another DVD by the same soothing instructor that’s 51-mintues long, and I did that one too, all without any trips to the hospital or anything! I’m pretty excited about the whole situation.

After each session I feel really relaxed, and it seems like I’m going through fewer pain pills when I do the yoga as opposed to when I don’t.

I’ve also started drinking tea. Back in the day, when my body didn’t hate me, I used to say things like, “Tea is literally just dirty water. Ick.”  But now, I’m sicker and wiser -- and I need to find ways to bring a sense of peace to my wounded body.

So, yeah, tea. It’s got to be better than Coke, right?

There’s a morning tea that seems to ward off the overwhelming feeling of being high that the meds give me. And then there’s a night tea that helps me poop — something I’ve really missed doing ever since my prescription pills took that seemingly natural bodily function away from me.

Truth be told, I am secretly hoping all these new changes will help me lose some of the 50 stupid pounds I’ve gained since getting sick. But if they even help me do more than shower or something, I’d be cool with that too.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Finding Meaning in Chronic Illness

By Jennifer Martin, Columnist

I have never known life without chronic illness and pain.  I was diagnosed with juvenile rheumatoid arthritis (JRA) when I was 18 months old, so the life of a healthy person is foreign to me.  I don’t remember much about my early childhood with JRA other than daily medications, physical therapy and endless doctor’s appointments. 

When I was 6, my arthritis went into remission.  I took full advantage of that and began taking gymnastics, played street hockey with the neighborhood kids, and later joined the swim team.  Life was good. 

jennifer martin

Then one cold, rainy day before swim practice, I noticed that my knee was aching.  I shrugged it off and went to practice.  Later that night, the pain had increased and my knee was swollen.  I just knew my arthritis was back.  I was 15 years old at the time. 

A visit to the rheumatologist confirmed my fear.  Just like that I was back on multiple medications, forced to give up gymnastics and swimming, and was living again with daily pain. 

I was trying to find a balance between normal teenage life and dealing with chronic pain that none of my friends or family could relate to.  None of my friends had to give up activities they loved.  None of my friends had to have their knee drained when medication wasn’t keeping the swelling down.  None of my friends had to deal with taking pills for breakfast, lunch and dinner. 

So why did I have to do all these things? 

I remember one day when I was a senior in high school, I was in so much pain that I just sat home on the couch in tears all day instead of going to school.  It wasn’t too long after that that I had my first knee surgery due to my arthritis.

Fast forward several years to one day when I was 25 years old.  It is a day I will never forget.  I was at my mom’s house when I began feeling a little bloated.  I used the bathroom and when I looked down I saw bright red blood in the toilet.  My heart began pounding, my breath quickened and my hands began to shake. 

“What the heck is going on with me?” I remember thinking.  I took a few moments to calm myself down and then I convinced myself it must be nothing.  I went back downstairs and joined in the conversation without telling my family what happened. 

Several days later however, my symptoms had worsened and there was still blood in the toilet.  I knew I had no choice but to tell my family.  That began months of doctor’s appointments and tests that no human should have to be subjected to.  When I was finally diagnosed with ulcerative colitis, I was relieved to have a name for what was going on and at the same time frustrated that this meant another chronic diagnosis, more medication and more uncertainty.

The next two years were a roller coaster.  I had flares, felt horrible, and then went into remission. 

February 2009 began the biggest challenge of my life.  It was six months after I got married.  I began having a flare and quickly knew that this flare was different than any I had experienced before.  The pain was more intense, the medications weren’t working, and I was quickly losing weight from my already thin 108 pound frame.  By April, I was admitted to the hospital 30 pounds lighter and experiencing constant, excruciating pain so intense that I literally could not stand up straight. 

Every time I was forced by my family to eat and any time I used the bathroom it felt like a thousand knifes slicing through my intestines.  I remember many nights in the bathroom covering my mouth to suppress screams because I didn’t want to worry my husband. 

The day after my hospital admission, I had a colonoscopy.  While coming out of anesthesia I heard my gastroenterologist say to one of her colleagues, “This is the worst case of ulcerative colitis I have ever seen.”

The next day, I was transferred to UC Irvine Medical Center where I was to have three surgeries.  Surgery one consisted of removing my colon and constructing an ileostomy.  Surgery two involved constructing an internal j-pouch which essentially acts as a pseudo colon.  Surgery three involved removing my ileostomy and connecting my j-pouch.  After my third surgery I experienced complications, due to the amount of weight I had lost and scar tissue which required further hospitalization.

While my third surgery was supposed to be my last, that was not the case.  Since then I have had three more surgeries due to my j-pouch twisting.  The last surgery was as recent as 11 months ago.  I’m hoping that was my last.

In the midst of all this craziness I managed to complete my doctoral degree in psychology and I now specialize in counseling individuals with chronic pain and chronic illness.  It has become my passion. 

Because of my own experiences, I understand the emotional issues that arise from living with chronic pain and chronic illness.  I understand the depression, the anxiety, and the feeling of being so sick and in so much pain that maybe it would be easier to end it. 

But I also understand how important it is to work through those feelings, to find meaning in your situation, and to find a way to live life despite your diagnosis.  That is what I try to instill in my patients.

I have also beaten the odds and had a son.  I was told that due to my surgeries I would only have a 20% chance of conceiving on my own.  I look at my son every day and know that he is my miracle.  I hope and pray that he will never know the pain of chronic illness and chronic pain, but if he does, I will be there for him and I will understand.

Jennifer Martin, PsyD, is a licensed psychologist in Newport Beach, California. In her blog “Your Color Looks Good” Jennifer writes about the psychological aspects of dealing with chronic pain and illness. 

Jennifer is a professional member of the Crohn’s and Colitis Foundation of America and has a Facebook page dedicated to providing support and information to people with Crohn’s, Colitis and Digestive Diseases.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: ER Protocols

By Carol Levy, Columnist

When I read about people going to the emergency room to be treated for breakthrough pain, it is rare for anyone to say they felt they were well-treated. They tend to say they were disbelieved, looked at as a drug seeker, or the ER doctor did not give them enough meds to last until they could see their pain management doctor.

I have almost always replied, “Ask your doctor to send a protocol letter to the ER. Then if you have to go they will know what you have and how your doctor wants it treated.”

It occurred to me that it would be a good idea for me to query some ER's and see if this was in fact good advice.

After talking with one nurse, I did not feel it necessary to talk with any others.

She told me too often patients come in who are known to be drug addicts or drug seekers. Often they come in complaining about chronic pain.

This can make it hard to distinguish who is truly in pain vs. someone feigning pain merely to get narcotics. 

I asked if a letter from a doctor explaining what the patient has and what could be done for them would help.

"That won't work," she said.  I asked why not.

"Very simply, the doctor would have to constantly be updating the letter,” she explained. “A letter written 6 months ago would be ignored. Things change, the patient may change, and we could not rely on something written that long ago. If a doctor sent us a protocol letter it would have to be updated every month or so and no doctor is going to go to the trouble to do that."

That made a lot of sense. Both that a doctor would not be willing to take the time and that the protocol letter would have to be a recent one.

“What if a patient called their doctor's office and then the doctor called the ER with instructions about what to do for the patient?” I asked.

“That would work. And is probably the best thing for someone to do,” the nurse told me.

I know it is hard to wait when you are in pain. I know the idea of giving the doctor time to call back -- say in an hour -- would seem like the longest hour in the world, especially when the pain feels insurmountable.

Most ER physicians don’t know us when we come in. We are just another stranger, saying we are in pain and often asking for narcotics. If we give our doctors the time to call them, the chances are much greater that an ER visit will have a better outcome – instead of leaving us feeling disrespected, mistreated, or not treated at all.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Hysingla & Zohydro: Same Church, Different Pew?

By Dr. Jeffrey Fudin

Same church different pew you ponder?  It’s not that simple. 

Almost a year to the day since the availability of Zohydro ER (hydrocodone extended release, manufactured by Zogenix), there is now another kid on the block; Hysingla ER (hydrocodone extended release, manufactured by Purdue). Nobody can deny that Zogenix paved a pretty hefty path to bring and keep this on the market.

Along the way was a pretty disheartening road.  But no matter how many unearthed faults were found in the path, they were minuscule compared to the faulted rhetoric among media sensationalists and politicians. With one road block after another, it became clear that politicians were more interested in saying something (anything) for the attention than they were about the truth. In fact, their futility and sensationalistic journalism promulgated numerous blogs here.  

On the one hand I suppose that was cultivating for this site and our readers, but unfortunately it was on the backs (perhaps literally) of legitimate pain sufferers that might otherwise benefit from an extended release formulation of hydrocodone.  Rehb.com provides some interesting infographics that break down nationally and by state, various permutations of how “Admissions to treatment facilities has been steady or rising for the past 20 years, yet it seems elected officials spend less and less of their time on the floor of the House and Senate talking about it.”

The indisputable facts are that since Zohydro ER release in March 2014, there have been over 50,000 prescriptions filled (almost 3 million capsules dispensed) yet an extremely low incidence of abuse, misuse, and diversion reported in the surveillance databases. 

Do note however that because schedule II drugs are not allowed automatic refills, each Rx is considered an initial fill, so the 50,000 prescriptions does not equate to 50,000 patients. I imagine we will see similar safety and surveillance data for Hysingla ER in the months ahead.

So, you ask, what are the differences?  On the surface it seems simple; 1 ) Hysingla ER is once daily dosing and Zohydro ER is twice daily dosing; 2 ) Hysingla ER has an FDA label as “abuse deterrent” and Zohydro ER does not (yet); and 3 ) Hysingla ER is a tablet and Zohydro ER is a capsule.

Let’s break this down, because ultimately it really should be about the patient.

History tells us that once daily or twice daily intended dosage forms sometimes require twice or three times daily dosing respectively.  Third party payers have notoriously used this as an excuse not to pay. By way of example, OxyContin (oxycodone extended release) is indicated for every 12 hour dosing, but it is not uncommon to see it appropriately prescribed every 8 hours instead of every 12 hours. The same is true for Avinza (morphine extended release).  Avinza is indicated for every 24 hour dosing, but it is not uncommon to see it prescribed every 12 hours instead of once daily. The best example where reality, practicality, and just plain good medicine flew in the face of the original package insert is brand name Duragesic, fentanyl transdermal (TD).   

The original package insert required every 72 hour changes of the patch.  Some patients didn’t receive adequate analgesia for that period of time – the manufacturer recommendation therefore was to raise the patch dosage to the next highest strength.  Sure, this would therefore raise the overall serum levels thus extending the therapeutic blood levels perhaps into the third day, but was it clinically the best thing for the patients and did it adhere to basic therapeutic principals?  The answer is no!  We always want to give the lowest effective dose.  If that could be achieved by remaining on the same fentanyl dose and changing it more frequently, then that is the proper approach.  See Medscape, Can Fentanyl Patches Be Replaced Sooner to Improve Pain Control?

To address point #1 above, the once daily practicality and convenience of Hysingla ER is of course a wonderful thing.  For a caregiver that can only get to the home once daily, it is a Godsend.  But, although it is a nice option for many, some patients might be better off on a lower overall 24 hour dose by using the every 12 hour dosage form of Zohydro ER.

To address point #2, abuse deterrent technology (ADT) is a wonderful thing too (kudos to Purdue), but ADT is not the be all and end all of substance abuse; it is simply another option.  To read more about that, see the Pharmacy Times article Abuse-Deterrent Opioid Formulations: Purpose, Practicality, and Paradigms. For the record, Zogenix ER has received FDA approval for their new abuse deterrent formulation.

And finally to address point #3, Hysingla ER is a tablet and Zohydro ER is a capsule.  From experience, it is clear that some patients are better able to swallow one compared to the other.  For some, the fear of swallowing a tablet (a form of phagophobia) is insurmountable.  For those that cannot swallow a tablet, I do prefer a capsule and the patient is told to sit or stand straight, place the capsule in their mouth, sip a mouthful of water, and look down towards the table or floor.  The capsule floats to the back of the throat – now swallow.  Although this often works, some might do better with a small tablet.

Hysingla ER is available by tablet in milligram strengths of 20, 30, 40, 60, 80, 100, and 120.

Zohydro ER is available by capsule in milligram strengths of 10, 15, 20, 30, 40, and 50.

For the benefit of media sensationalists and political mouthpieces, let me save you the trouble and embarrassment this time around, because if tempted, I will call you out publically again.  Hysingla ER 120mg is not 3 times more potent than Zohydro ER 40mg. They are equipotent because hydrocodone is hydrocodone is hydrocodone as explained in the previous post here, ZOHYDRO: What weighs more – A pound of feathers or a pound of hydrocodone?

Kudos to the two companies that fought to bring these new options to market for patients that can truly benefit from a single entity extended release dosage form of hydrocodone. 

Jeffrey Fudin, PharmD, is a Diplomate to the American Academy of Pain Management. 

Dr. Fudin practices as a Clinical Pharmacy Specialist and Director at the Stratton Veterans Administration Medical Center in Albany, NY.  

This column is republished with permission from Dr. Fudin’s blog.