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An open letter to Eli Lilly and all patients affected by Cymbalta's withdrawal symptoms

  [ 46 votes ]   [ 21 Comments ]
By Donna Gregory Burch • www.ProHealth.com • July 17, 2017


An open letter to Eli Lilly and all patients affected by Cymbalta's withdrawal symptoms
This article was originally published on NationalPainReport.com. It is being republished here with permission from the editor. 
 
When I started blogging about fibromyalgia, I didn't know much about Cymbalta (generic name: duloxetine). As a fibromyalgia sufferer, I'd only taken it for two days. My doctor had warned me Cymbalta could have severe side effects, but I was desperate for relief from my fibromyalgia symptoms so I asked him to let me try it. After walking around in a dazed fog with my brain buzzing for two days, I decided Cymbalta wasn't for me and moved on to trying other treatments.
 
Shortly after starting to publish my weekly fibromyalgia news posts in 2015, I learned thousands of patients were suing Eli Lilly & Company, claiming the drug maker didn’t fully disclose the severity or frequency of Cymbalta’s withdrawal symptoms. As a former newspaper reporter, I knew this was a big story within the fibromyalgia community, and I published a series of articles on my blog about the lawsuit. As a result of those articles, I've been inundated the past two years with emails, blog comments and social media messages from Cymbalta users, many of whom are in the midst of going through withdrawals and are desperate for advice.
 
I feel helpless when I hear from these people. I used to refer them to the attorneys in the above-mentioned lawsuit, but that suit was settled last year. There's a potential class-action lawsuit still in the works, but from my understanding, the legal firms involved in this matter have stopped accepting new clients. (If I'm wrong about this, please let me know in the comments!)
 
When someone contacts me these days about Cymbalta withdrawal, I can only refer them back to their physicians for help. Unfortunately, few physicians know about Cymbalta Discontinuation Syndrome or how to manage withdrawal symptoms if they occur. Because Cymbalta is formulated in 20mg, 30mg and 60mg capsules, physicians generally wean patients by cutting their dosages in half over a few days. For many, this method of weaning is too fast, sending them into withdrawal.
 
Sadly, a growing number of patients are weaning themselves off of Cymbalta by opening up the capsules and literally counting out the beads inside, reducing the number taken over time. Can you imagine how tedious and time-consuming that must be? But that is what some of these desperate patients are doing in an effort to safely get off of this drug!
 
I hear from affected patients every single week, and it's heartbreaking. A few days ago, I received a message from yet another patient, telling me, "I feel like killing myself." This isn't the first time I've received such an alarming message about Cymbalta, but it was the proverbial straw that broke the camel's back. This needs to stop! So, I called the U.S. Food and Drug Administration (FDA) to find out what could be done to reduce the number of patients who go through this hell. (More on that later.)
 
And yes, for these patients, it is hell! If you doubt it, click on any of my Cymbalta articles and read the comments. These patients sometimes describe themselves to me as feeling "psychotic" and suicidal when they try to wean off of this drug. They often experience something called brain zaps, which essentially feels like a lightning bolt going off inside of their heads. They have dizziness to the point of not being able to stand on their own. They have nausea, headaches, anxiety, nightmares and the list goes on and on. Sometimes these symptoms last for weeks or months. Patients are scared and don't know if there will be long-term effects.
 
These patients will often report their symptoms to their doctors. Frequently, their doctors have never heard of Cymbalta Discontinuation Syndrome and may discount their symptoms as being psychosomatic. Well, there's a reason why the physicians don't know about Cymbalta's high rate of withdrawal symptoms. It's because Eli Lilly doesn't disclose the actual rate of withdrawal symptoms within its physician prescribing guide.
 
Cymbalta's prescribing guide (see section 5.7) reads, "Following abrupt or tapered discontinuation in adult placebo-controlled clinical trials, the following symptoms occurred at 1 percent or greater and at a significantly higher rate in Cymbalta-treated patients compared to those discontinuing from placebo: dizziness, headache, nausea, diarrhea, paresthesia, irritability, vomiting, insomnia, anxiety, hyperhidrosis and fatigue.”
 
That "1 percent or greater" figure used by Eli Lilly might be technically accurate, but it's grossly misleading. Eli Lilly's own research shows up to 50 percent of patients experience withdrawal symptoms when they discontinue Cymbalta. That's HALF of patients!
 
To Eli Lilly & Company:
 
You should be ashamed of yourselves! By saying in your prescribing guide that "1 percent or greater" of patients have these withdrawal symptoms, physicians infer this is a rare occurrence, and they are not taking proper steps to wean patients off in a slow, deliberate manner to minimize these life-debilitating symptoms.
 
When I was reporting on the lawsuit, I was hopeful your company would change its prescribing guide to include the true rate of withdrawal symptoms, but that lawsuit has now been settled, and patients are still being harmed. I have had enough and so have the thousands of Cymbalta users who have suffered because the frequency and severity of these withdrawal effects haven't been properly disclosed.
 
You need to do the right thing and inform physicians that withdrawal is a common occurrence so they can take steps to protect their patients. Regardless of how it impacts profits, it is the ethical thing to do!
 
Better yet, conduct research studies on how to safely discontinue Cymbalta, so that physicians have a clinically-proven protocol they can follow for weaning patients. (Yes, realistically, I know this will likely never happen.)
 
To all U.S.-based Cymbalta users who are experiencing or have experienced withdrawal symptoms:
 
If you're a patient who had withdrawal symptoms when you stopped taking Cymbalta or the generic, duloxetine, you can report this as an adverse event to the FDA by visiting the MedWatch page and filing a report using the "report a problem" button. If enough Cymbalta/duloxetine users share their experiences with the FDA, then the U.S. government will have to take action. The FDA may be able to prompt Eli Lilly to update their physician's prescribing guide and/or issue a black box warning on Cymbalta, letting physicians and consumers know about the high rate of withdrawal symptoms.
 
(Cymbalta users in other countries can contact the appropriate agencies in their own jurisdictions.)
 
Cymbalta users can also take an active role in this matter by printing off research studies about these withdrawal symptoms and distributing them to their physicians as an educational tool. That may help future patients.
 
Here are links to three such studies, which show Cymbalta's high rate of withdrawal symptoms upon discontinuation: 
  1. Symptoms following abrupt discontinuation of duloxetine treatment in patients with major depressive disorder
  2. Duloxetine: a review of its use in the treatment of generalized anxiety disorder
  3. Duloxetine 60 mg once daily in the treatment of milder major depressive disorder 
Final words
 
It is not my intent to harm Eli Lilly. Based on clinical studies, Cymbalta is the most effective pharmaceutical treatment for fibromyalgia. There are some in the fibromyalgia community who wish this drug would be pulled off of the market. I am not one of them. I am grateful it's on the market and is improving the quality of life for some fibromyalgia sufferers. I recognize every drug has pros and cons.
 
But that being said, patients and physicians need to be educated on this issue so they can make informed decisions about their healthcare. Too many people are having their lives negatively impacted when they try to discontinue this drug. My fellow fibro warriors have enough challenges as it is, and they deserve better!
 
Click here to visit my Cymbalta resources page, which includes all of FedUpwithFatigue's posts about the withdrawal symptoms and subsequent lawsuits, along with links to mainstream news articles, support groups and more!

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.



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Article Comments Post a Comment

Cymbala withdrawk
Posted by: Knkmcisaac
Jul 21, 2017
I went thru this years ago I took 6 weeks to taper off and the side effects were still horrible one thing that my Doctor finally did was add a low dose of Effexor, yup add a drug to remove a drug. Both Effexor and cymbals are in the same family but Effexor will bind similarly there fore you don't get the severity of withdrawal. For me I stayed on Effexor as I have serious repetitive depression but having said that the withdrawal off of Effexor is much much more tolerable although still needs to be done over 6-8 weeks. For those it works for hurray fir those it doesn't prepare for being ill for 6-8 weeks likely being unable to work I was lucky?!? As I was off on disability already. Fibro hugs??
Reply Reply

Withdrawal of Cymbalta
Posted by: 1snelson
Jul 21, 2017
So I'm on 60 mg 2x a day...I'm guessing I'm going to be in a big world of hurt.??
Reply Reply

Cymbalta Discontinuation Syndrome
Posted by: ProHealth
Jul 24, 2017
For more information see "Cymbalta Warning: Discontinuing May Result in Severe Withdrawal Symptoms" (http://www.prohealth.com/library/showarticle.cfm?libid=18811) or search for "Cymbalta Warning" at the top of the page.
Reply Reply

Withdrawal symptomes
Posted by: dnebelle
Jul 26, 2017
Great article. Sadly, it is not just Cymbalta that causes these same side effects upon withdrawal. Many antidepressants do the same. I had a doctor take me off Effexor XR several years ago. It took 42 days! I had the horrible brain zaps, dizziness, and more. I was given no info on how to withdraw except to decrease slowly. I would have counted the beads gladly except it was a pill. Nightmare time for me. There does need to be a protocol for discontinuing these drugs. People cannot stop there lives for months due to not being able to function during withdrawal. Thanks for bringing the attention to this matter.
Reply Reply

 
Effexor
Posted by: sheri61
Jul 26, 2017
I had the same withdrawals from Effexor. I think Wellbutrin might only be the only AD without significant withdrawals

 


Cymbalta withdrawal
Posted by: endfatigue
Jul 26, 2017
The concern is that they made an inherently unsafe product by not making pill strengths that were low enough to allow withdrawal. This, combined with the bold type warnings that breaking or crashing the bill could kill you, made it impossible to safely wean people off Cymbalta.

Some have learned the trick of cutting open the pill and counting out the beads so they could taper safely, but this should not have been necessary.

It will be interesting during the legal discovery phase to see if the company purposely did not make a low enough strength pill to allow people to come off the medication
Reply Reply

Cymbalta concerns
Posted by: sheri61
Jul 26, 2017
I've been on Cymbalta for fibromyalgia and as my antidepressant for my anxiety/panic disorder. I'm starting to feel the Cymbalta isn't working anymore but there isn't anything new out there to takes it place. I've thought about weaning off but after his article there's no wa m going it alone. The FDA must supply a safe way to get off this medication. I was not told either b my Rheumatologist or Psychiatrist what the withdrawals symptoms would be if I decided to go off. I don't think they know either.
For those that have gotten off Cymbalta, what are you taking in place of it or did you go back on it cuz the withdrawals were so bad?

Thank you for reading his.

Sheri61
Reply Reply

 
Withdrawal
Posted by: CLA
Jul 26, 2017
I have read and was also taking lexapro and that seems to dull the withdrawal for some.

 

 
I have PTSD, Panic Disorder and General Anxiety Disorder
Posted by: ppmickey
Jul 28, 2017
The only drug that has worked for me is Xanax. I take 1 mg 4 times a day. I thought it had stopped working months ago when I didn't know yet that I had a Vitamin D deficiency. That can make you paranoid, edgy, panicky, and I know I drove my husband nearly nuts with my behavior. I am on 60,000 IU of Vitamin D2 once-a-week and am getting to the pool with my husband as often as possible to soak up the sun. What a difference it is starting to make.

I don't take to changing prescriptions well. There are other drugs for anxiety. Xanax works for me and since we've moved will be a pain in the rear end to get.

 


Re: Cymbalta
Posted by: rt207
Jul 26, 2017
Cumbalta did nothing for my pain. Gabapentin made me unable to function, I was like a zombie! My doctor started me on the same dose a child would be given, and still it made me feel like I was dying!!
As far as withdrawal, I thought Effexor was the worst? I can't imagine any Med being harder to discontinue than that, but if Cymbalta truly is worse than Effexor then you have my sympathies! These drugs have all these horrible side effects, but everyone is just fine with giving them out to Fibro patients, but God forbid they go with the meds that actually WORK for Fibro pain, with the biggest side effect being constipation!
Yes, I'm talking about the "evil" narcotic pain medications! Because some people lie to doctors to get meds they don't need, and others abuse their meds, it's made it almost impossible for patients who are truly in pain to get the pain meds that actually work!
The CDC lumps prescription pain meds in with the data from heroin users, then make ridiculous "guidelines" to try and tell MY doctor how to treat ME! They need to focus on finding those who divert opioid medications from who they're meant for, and stay out of legitimate pain patients medical and pharmaceutical records!
The old standard painmeds have been around so long because they actually WORK! The true addiction rate of patients is actually very low when meds are taken as ordered. If they don't take them as ordered? Then cut them off! Don't punish the law abiding patients who are in daily, horrible pain because of the offenses of addicts.
After my awful experiences with Gabapentin and Cymbalta, I refuse to be given these type of meds again, my pain meds have never made me feel like those meds did! In fact, I don't feel anything different when I take pain meds, the pain just fades away for a while. The warm fuzzy feeling from taking narcotic pain meds goes away in the first week of long term use, and doesn't come back. I've been on the same dose for almost 7 years for my intractable pain. Once you reach a level where your pain is fairly well controlled, the myth that your dose must keep going up is just that, a myth! Nothing takes ALL your pain away, but if these meds can take the worst of it away, why not utilize these meds??
Reply Reply

 
Re: Cymbalta
Posted by: rt207
Jul 26, 2017
Can't figure out how to edit post, but that first line should say "Cymbalta"......lol!

 

 
Narcotics and addiction vs Poor Quality of Life of chronic pain, which can cause suicides also
Posted by: ppmickey
Jul 28, 2017
In reply to your comment, I was a little concerned about what narcotic you are on and how much of it and how high in mg's you are taking it. I guess a warm fuzzy feeling may happen to some people, but my narcotic medication I'm on has never done that to me. I still have clarity and enough to be able to manage the chronic pain I have every day. You are as addicted to your narcotic as I am to mine.

We are both being punished for being on narcotics because of the abuse of patients being prescribed the drug who don't need it as we do. Having more than one cause of constant, chronic, never-ending pain is a terrible way to live. I took every NSAID and steroid to start out before I ended up with bleeding ulcers and moderate to severe Diverticulosis. I was then put on Lortab, changed to Norco because it has less Tylenol and am now on 6 Tylenol #4 tablets per day. We aren't alone. There are many more like us with other conditions and I won't take the time to list all of mine, it's too long, and narcotic medications are the only thing that makes living great and makes you want to wake up each morning and discover all the things you want to do that you haven't done yet.

To lump narcotics in with Heroin is just plain stupid. Prescribed narcotics followed by medical personnel is so different from people taking Heroin that there is absolutely NO comparison. I don't get it either and don't like it one bit. I share your frustration. Good luck to us all.

 


Withdrawal
Posted by: CLA
Jul 26, 2017
The challenge with starting any drug and then withdrawing is you never know how your body will respond. Fortunately my withdrawal was not as severe as others. But if I had known the true rate of withdrawal problems I never would have started. Cymbalta did help my pain tremendously, yet I had challenges with dizziness. The answer is really for Eli Lily to clean the drug up, release the next version and pull the original. A win win for everyone.
Reply Reply

Cymbalta withdrawals
Posted by: Cat48
Jul 26, 2017
I had gotten free samples of cynbalta from my pcp to treat my fibromyalgia symptoms because i did not have prescription insurance. So when he was not able to get free samples anymore i had to resort to wheening myself off of it because the cost per month was more then i could afford. I slowly started getting down to 30mg a day for a week then 30 mg every other day til they were gone which took about 2 weeks. I was miserable the whole time with bad headaches and moods were all over the place especially extreme sadness and hopelessness. I figured once it was all out of my system i would return to "normal". Well what ended uo happenening is i felt like i was gonna die. I thought i was literally having a heart attack. I ended up in the ER. My heart rate would race then slow right down. I was so sick to my stomache and just felt misserable. They concluded it was severe cymbalta withdrawals and the only way to come out of it was to, yes, start the dang drug again. So, i was able to get my meds from a program that offers meds if u have no perscription insurance for free. If i had only known about that before all of that...but, if only i would have known i am gonna be a slave to it i would have NEVER EVER STARTED IT TO BEGIN WITH ??
Reply Reply

Withdrawal from Cymbalta
Posted by: Onegoodegg
Jul 26, 2017
I have taken 60 mgs of this drug for 10 years. It causes terrible hot flashes and sweats to the point of water dripping onto your clothes. I fortunately get it from my psychiatrist and he knows how to properly withdraw someone from a dependant drug situation. I will have him withdraw me from this terrible drug starting next week. I really think psychiatrist are the only people who should prescribe this drug. My Rheumatologist had him prescribe it for my Fibro. Don't think it actually ever worked. Good luck to me!
Reply Reply

Treatment and withdrawal
Posted by: Scavone
Jul 26, 2017
PAUL'S COMMENT:

First of all I would like to take exception to Miss Burch's statement that "Cymbalta is the most effective pharmaceutical treatment for fibromyalgia."

Cymbalta is a mask not a treatment, inasmuch as the symptoms do not get better.

Also, she seems to have ignored natural treatments including PQQ, ubiquinol, magnesium glycinate, malic acid, grape seed extract, vitamins A, C and E, St. John's Wort and 5-HTP.

Secondly, I take exception to Eli Lilly who knew that Cymbalta caused suicidal tendencies. This included a young healthy college student who was recruited by Lilly to test Cymbalta. After just one week, she hung herself in the shower at the Eli Lilly laboratory. There were other similar cases. Google Eli Lilly + Cymbalta.

The big problem with almost all SSRI drugs is that they are stored in the fat cells. This means that discontinuation is very difficult. Google Dr. Joseph Glenmullen, MD author of the book "Prozac Backlash".
Reply Reply

Cymbalta and Lyrica
Posted by: FM40+
Jul 26, 2017
Dear Ms Burch
I just read your article on Cymbalta withdrawal on the ProHealth website. I totally agree with you about the need for pharmaceuticals to be upfront with physicians about the withdrawal effects of these modern miracle drugs. I have fibromyalgia and since I began on Cymbalta have had such a marvelous reduction in most symptoms especially pain that I don't ever intend to go off Cymbalta. But I am 72 and length of continuing this drug is not as long as the unfortunate youngsters.
I have had the electric type of feelings warned about in the patient information from the pharmacy. I asked myself "OK I tell my doctor and he will want me to go off the Cymbalta: which is not what I want." So I put up with it.
I would like you to investigate the withdrawal symptoms of Lyrica. I took myself off this drug by myself and virtually suffered for 9 months to a year from withdrawal symptoms. Once again I asked myself if I should contact my doctor. What I needed was to go to hospital and be treated prn for the symptoms. I realized my doctor would not put me in the hospital for this so I did it alone.
I fortunately was in a situation where I could just stay in bed and suffer and not be bothered by other people. Which is what I did. I am so sympathetic with those who have suffered Cymbalta withdrawal.
I would like to see physicians become more involved with the withdrawal and side effects of drugs sold to them by pharmaceuticals. As a patient I do not have that authority. To me the FDA does not do enough but they can only review the information given to them by the pharmaceuticals.
To ask pharmaceuticals to police themselves is like spitting into the wind. A political comment here. Big business is big business because all they care about is the bottom line. There is actually a law that enforces big business be involved only with the bottom line. They need have no concern about the products they produce and the effect on consumers. They do not have to per law.
I am a former RN and not only have a little more knowledge than lay people but have witnessed patients suffering from drugs.
Please do what you can. And thank you so much for your article. Hopefully enough influential people will get involved with the lies of omission about drugs that patients will not have to suffer.
Not holding my breath on this one. Don't think I have enough life left to see a change.
Reply Reply

This is scary stuff!
Posted by: sherrie1956
Jul 27, 2017
I have had Fibromyalgia for 20 years and have tried Lyrica with no relief. I also have depression and anxiety that has come several times in my life during life's most trying times and then when I had gone past these hard times, it has left. The most recent episode lasting the last 4 1/2 years since I lost my job as an RN due to chronic pain in my low back and legs. After many tests this pain has been diagnosed as being caused by 3 bulging discs and neuropathy down both legs.
The reality of not having an income and being single created an anxiety and depression state that I have not been able to overcome. Hence the treating Doctors put me on Cymbalta, at the time, more for the depression and anxiety than the Fibromyalgia. It's therapeutic effects have been miraculous for all 3 problems! I have described its effects as if someone opened the blinds and the sunshine came in. Depression was helped to the point that I don't spend most of my day crying in bed and the anxiety is gone.
An interesting and amazing effect I have come to appreciate is that with the help of Gabapentin, my Fibromyalgia symptoms are gone except for a very occasional (every 30 days or so) appearance. It's been amazing! I still have the back pain and neuropathy in my legs, so I still can't work but have been thankful for the relief I have gotten from it.
Now I read your article and people's comments! This is scary stuff! I will be talking to my pain Doctor about all this and hopefully she has some ideas about what I should do! I am appreciative of your article and will proceed from here at least being more educated than I have been before!!
Reply Reply

Cymbalta withdrawal
Posted by: mathisdl
Jul 27, 2017
I have been taking Cymbalta for many years. I have withdrawal symptoms if I miss a dose and if I don't take it within 24 hours of the previous dose. I cannot stop taking it without having major withdrawals so I just keep taking it.
Reply Reply

It's the same problem with Pristiq and I'm stuck
Posted by: aryiella
Jul 27, 2017
I tried to find a lawyer willing to take up the fight over Pristiq (also an SNRI) on this exact same issue. Couldn't find any. Pristiq is just as bad since their standard dose is 50mg and the only step down is 25mg!!! Trust me, that's impossible to do without completely losing your mind! I've been on this drug around 8 years now and I can't even think about weaning. I tried once on my own by cutting the pills and after a month when I got down to 25mg, my head physically hurt so bad (like a depression 'hurt'), I was crying nonstop and didn't want live anymore so I gave up and went back to my 50mg. Pristiq has a special time-release coating, so you're really not supposed to cut it. You also can't get it compounded (I checked). The only option you have if you want to taper is to switch to Effexor and taper really really slowly. It can be done because the capsules have the beads. But like the writer said, it's a ton of work! And realistically, no matter how slow you go, you are going to have discontinuation symptoms. Another option is to cross over to Prozac and taper, but the Prozac gave me horrible anxiety, so that was ruled out. It really really sucks. In my opinion, tapering off an SNRI is harder than benzos. Over the last three years I've been able to go from 1mg Klonopin (after taking over a decade)...crossed over to 20mg Valium and slowly taper. I'm currently at 6mg. It gets harder the lower I get. It may take me 3 more years to get off it, but now I know how bad these drugs are for your brain long-term as well (increased depression and loss of memory). Anyway, that's my rant. If anyone knows about a class-action against Pristiq/Pfizer, please let me know.
Reply Reply

Combination of Cymbalta and Zoloft can be life threatening
Posted by: ppmickey
Jul 28, 2017
In 2009, I was put on Zoloft for depression and Cymbalta for Fibromyalgia pain and Diabetic Neuropathy. I became dangerously suicidal and quit taking both drugs on my own immediately. If I'd found the bullets for the gun I was going to kill myself with, I wouldn't be writing this message now.

Did I go through agony of withdrawal? Indeed. Very badly. If it weren't for my husband, I would have probably tried to find a way to commit suicide again. I had horrible pain until my next doctor appointments. One had put me on Zoloft and the other on Cymbalta. I was put back on and am still taking Neurontin and taken off anything for depression. I felt such relief after taking the Neurontin (Gabapentin) and am still taking it.

I did find out that Neurontin (Gabapentin) is also addicting. Apparently I am taking many drugs that are addicting. I will put up with that because of the incredible relief I get from the medications I'm on.

Discuss all your medication with your doctors before anything is changed, or something new is added or something is removed. It could have grave consequences.
Reply Reply


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