11 replies to this topic

[stopelilillynow]

I am a 49 year old female college professor and I have been taking Cymbalta for 2.5 years for symptoms of fibromyalgia. It seemed to help the first year, but about a year ago, my back pain got worse, so my doctor raised my dose from 60 to 90 mg once per day. It helped a little. I'm not typically a whiner, so I just slogged along. Last summer, I tried to go from Cymbalta to Savella, and what I know now is that I was withdrawing from Cymbalta - but at the time, the doctor and the pharmacist said that it was because the Savella didn't agree with me, so I just kept taking Cymbalta to alleviate the symptoms of the withdrawal. After talking to my chiropractor and a neighbor who is also a family doctor, I found that 90 mg was pretty much a horse dose for my 105-110 lb body. I wasn't feeling much better, so I decided that I didn't need all of that junk in my system. I weaned from 90 back to 60 mg in a couple of weeks and didn't notice any difference. I then went from 60 to 30 with no problem - I really don't even think I was really weaning - I guess I was lucky. A few weeks ago I talked to my doctor about going off of it completely, and we decided that I should take an osteoarthritis drug called Mobic, since MRIs showed that I do have OA in my lumbar spine and right hip, and the Cymbalta didn't seem to be doing anything for me. Mobic can't be taken with Cymbalta as it increases the risk of bleeding. The trouble began when I began to wean down off of the 30 mg capsule. I guess because the doctor saw that I didn't have any issues with coming off of the 90 and 60, she didn't prescribe a weaning program for me. Oh, boy...

About three weeks ago, I started opening the 30 mg caps and just tapping out some - I didn't even know that there was a 20 mg capsule. Looking back now, my husband said that I was irritable and a little depressed, but I guess I didn't see it. I've been going through a lot with my back and hip pain - cortisone injections, etc., so I guess I thought I was cranky because I was in pain. I did notice that during physician appts during the last few weeks, though, that my blood pressure was up to 125/70, which is high for me - I usually run a really low 90/65. I also noticed that sometimes I could hear my blood "whooshing" in my head, and that my heart seemed to be beating really fast sometimes. Again, I've been under stress and in pain, so I chalked it up to stress. I've also had a whopper headache the last 2.5 weeks, which I attributed to "sinus", and ringing in my ears, which I also attributed to sinus. I've been really nauseous, too, which I figured was from the headache.

After three weeks of tapping out half of the capsule, I figured i was good to stop the medication and took my last dose of Cymbalta on Sunday. Monday and Tuesday, I felt terrible. Wednesday found me completely incapacitated and unable to get out of the bed. I was crying uncontrollably, shaking, dizzy, had nausea and vomiting, diarrhea, and my arms and legs tingled and I felt like I had bugs crawling all over me. I had to cancel my class, and I can't describe the anxiety and panic I felt. If anyone has ever had a panic attack, multiply it by 100 and add flu-like symptoms and the feeling that you are being jolted by electricity and there you have it. I called my family doctor, sobbing. She told me that it was serotonin withdrawal and that she was calling in 20 mg capsules and for me to take one right away. My husband ran out and picked up the drug - that is when we started researching Cymbalta withdrawal - I had no idea that any of this existed!! I felt like I was going to die for about 24 hours - and that's not drama - I FELT LIKE I WAS GOING TO DIE. I was absolutely psychotic. I've seen people in heroin withdrawal, and this didn't seem any better than that. After taking a dose Wednesday night and Thursday morning, I didn't feel much better. The doctor said that I just had to wait it out until it kicked back in. The incredible anxiety started to dissapate Thursday night, but it is now Friday afternoon and I'm still nauseous and fighting the incredible headache.

I am so, so angry. I believe that my doctor put me on this medicine in good faith. Now that I have read the blogs and the websites about Cymbalta and the debilitating effects of withdrawal, I want to do something about it. To really see what Eli Lilly has accomplished here, go to this website:

http://www.fda.gov/d...e/UCM172866.pdf

Please, when you have a minute, scan the presentation. You will not understand what I'm talking about without it. Be sure to read the excerpts from those who have suffered.

It is a presentation from 2009 - I can't figure out if the FDA has followed up on this. You will be horrified at the scope of this problem. I intend to do something about it. Once I get back on my feet (and still physically addicted to Cymbalta, by the way), I will still need a program to get off of it. There are websites that offer free programs on weaning, but they also sell supplements to assist with withdrawal symptoms, which I find suspect. Eli Lilly has perpetuated this issue as they 1. don't make a dose less than 20 mg capsules, so people are left to BREAK THEM OPEN AND COUNT GRAINS OF MEDICATION in order to wean down, 2. don't offer a taper schedule for physicians so that they are flying in the dark, as my neighbor says, and 3. OFFER A FREE 30-DAY TRIAL (just watch the commercials or go to the website) to get people hooked. If you look elsewhere on this website, it can take months or years to taper from this drug.

My question is this: IS there an actual class action lawsuit out there? I see lots of ambulance chasers advertising but no news of an actual suit. Has anyone lobbied for legislation requiring companies that manufacture psychotropic drugs to provide proper low dosages and a taper program? I can't find anything concrete. I will lead the charge if no one else is, but I need to know where to start. I also don't see any peer-reviewed journal articles or studies about the withdrawal issues. These blogs are so, so sad. These are folks already suffering from fibromyalgia, depression, or anxiety disorders.

Don't get me wrong - Cymbalta can work well for treating these various conditions - and some people can go cold turkey without any issues. However, it seems like the majority, like me, have real issues with withdrawal symptoms.

Please, if anyone can help with this, let me know. I intend to follow up and follow up HARD. As a person who has prided herself on trying to stay healthy, eating right, exercising, etc., it is heartbreaking to find that I am addicted to a drug like this. Now I know why there is methadone for heroin addicts.

[Uriel]

Hi
Man it's all so scary. I totally had the same withdrawl symptoms when i tried to go cold turkey. I have been counting granules for 2mths now and am down to 20mg as they don't come in 20mg in canada. I was put on this drug for fibro pain post knee surgery. It has been hell to get off of. I have 5 wks left in my weaning plan and i know it's going to suck.
I am at 20mg tomorrow and have had nauseau all wk at 22mg. But i am getting off this crap before another summer is ruined. I am taking ginger gravol twice a day which really helps.
I still feel like crap alot and am tired. I am going to try to get to 7mg for 2wks then drop it. I really think this drug company should be held accountable. My dr had no idea of the symptoms. My pharmacist sure knew. I can't believe this drug got any kind of approval.
Taking omega 369 liquid helps with the brain alot . I haven't had any real issues with the zaps since i started taking it.

[stopelilillynow]

Thanks for your reply. I'm so sorry that you are having to go through this. I'm on day three of being back on 20 mg, and I still feel awful. Not psychotic any more, but sad and tearful and cranky and nauseous and a headache that won't stop. It's crazy that I'm getting back on the drug so that I can cope enough to come off of it. There's something really perverse about that. Every time i read about people counting the stinking grains in the capsule, i want to throw the computer across the room.

Something that i think is significant - I read a NY Times article last night from 2004 about a 19 year old girl who was in the clinical trial for Cymbalta. They had her on "higher than normal" doses for several weeks and then gave her a placebo. She hanged herself in the shower over the weekend at the Eli Lilly clinic. Up until the study, she was a normal college kid. I think it was swept under the rug as one of those "Cymbalta may increase the risk of suicide in teenagers and children" things. I think it had NOTHING TO DO WITH THE DRUG ITSELF - IT WAS THE WITHDRAWAL SYMPTOMS. I'm going to try to find the child's parents. What is wrong with this picture?!!!!

I really hope that you get to feeling better. Be careful with your taper schedule. Please get the word out to everyone you know about this. I intend to meet with every physician in town and am trying to get someone from the NY Times involved.

Take care of yourself. I hope that you find peace after this.

[Uriel]

HI
How are things going with you? Are you tapering now from 20mg? I am down to 20mg now it's been 2mths for me to get down to 20mg from 30mg. I was going to go down to 16mg this Sunday but i am having alot of mild withdrawl symptoms at 20mg so i think i will take another wk to drop to 16mg . I think that drop is gonna be rough. But I really want off this crap by the end of April. I am just having nauseau and edginess and i am tired. I find if i don't get to bed by 9:00 every night i am very grumpy the next day all day. The sleep seems to be important for me. I do sleep pretty well so far. Had some weird dreams when i started to drop my dosage but they seem to have subsided. I have had some anxiety today but i think it's because i need more sleep. Hope your doing ok.

[stopelilillynow]

Thanks for checking on me. I'm actually finally back UP to 20 mg. My doc had me go from zero back up to 20, since my withdrawal was so wicked. I couldn't function last week and I needed to get back to work - i teach, so my job was on the line. After five days of being back on 20, I feel almost normal. The headache is almost gone, and the nausea has subsided a lot. I'm still cranky, though - short tempered at times, but at least I'm not crying hysterically!

I think I've decided to be "normal" for a week or two before I start the taper again. I don't think that I can do what you've done. I will probably only empty a couple of grains a week. I'm so frightened that the WD will happen again - I don't really care how long it takes. Know what I mean? I don't ever want to go through that psychotic feeling again...

It's great that you are now able to sleep. I've never been able to - i take Lunesta, a tiny dose of 1 mg - it seems to work. Otherwise, I'd be up all night - so I'm glad that looks like it's getting better for you.

Get this - I found out one of my coworkers yesterday is on 120 mg!! She has MS, but I can't find anywhere that that amount is indicated for anything. She says that it helps her pain, God bless her, but I am really furious with her doctor for doing that to her. Can you imagine her trying to get off of 120 mg??? Talk about adding insult to injury. I am really worried about her. The doctors and pharmacists make me so angry. I'm still trying to reach someone to do a big story about this. No one is holding Eli Lilly's feet to the fire to take responsibility for the thousands who have experienced the withdrawal symptoms. Grrr...

Get some good rest and keep me posted on how you are doing!

[Shelly]

I am with you on doing something! I am beyond frustrated with doctors at this point. Like you, I must wait to feel better!! Just trying to function day to day is rough, let alone taking on the pharm co. At this point, like I said in my first post, I am telling anyone and everyone who will listen to me! Just the other day at the hospital pharmacy when I picked up my cymbalta rx, I asked the lady helping me if she knew about the WD side effects. She did not, and thanked me because a friend of hers just started taking it. Anyway, message me if you like.

[happyzapynot]

Like you,I'm trying to find out about a class action suit but haven't gotten any conclusive info yet. My last dose of death was on 3/17. I call it 'dose of death' because I attempted suicide in July,2011 after being on Cymbalta since August, 2010. It seemed like a logical thing to do because the suicidal ideation came so 'naturally.' Those of us who are withdrawing from the stuff feel like we are dying but some people may actually commit suicide while under the influence of this money maker.
Malaria like withdrawal symptoms aren't advertised, are they? "Here's a free dose of chills, shaking, fever, nausea, brain zaps, rage, irritability, photosensitivity, itchiness and muscle pain." I wonder how many billions Eli Lilly would make off THAT advertisement?
Tomorrow I go for a liver function test. If this junk has damaged my liver Eli Lilly is going to feel the wrath!
Thanks for your post. If we all keep looking we will find a way to prevent others from suffering from this poison.

[happyzapynot]

Hi
Man it's all so scary. I totally had the same withdrawl symptoms when i tried to go cold turkey. I have been counting granules for 2mths now and am down to 20mg as they don't come in 20mg in canada. I was put on this drug for fibro pain post knee surgery. It has been hell to get off of. I have 5 wks left in my weaning plan and i know it's going to suck.
I am at 20mg tomorrow and have had nauseau all wk at 22mg. But i am getting off this crap before another summer is ruined. I am taking ginger gravol twice a day which really helps.
I still feel like crap alot and am tired. I am going to try to get to 7mg for 2wks then drop it. I really think this drug company should be held accountable. My dr had no idea of the symptoms. My pharmacist sure knew. I can't believe this drug got any kind of approval.
Taking omega 369 liquid helps with the brain alot . I haven't had any real issues with the zaps since i started taking it.

I'm glad you found help from the omega 639. Alleviating at least ONE symptom helps in coping with the others. Isn't it amazing that the physicians who prescribe Cymbalta are ignorant of its withdrawal symptoms? Apparently Eli Lilly has them duped into believing the ads in the medical journals. Shouldn't a physician be smarter than that??? After my experience with this drug I don't trust anyone. I've found that drinking lots of water helps. Adding a spoon of cider vinegar to a lare glass of water did wonders for helping calm my gut. I hope you find relief for the worst of the symptoms. Hand on. Don't let the bad guys win. Reclaim you summer!

[TXcounselor]

I'm dedicated to doing something about this. This has been a life-altering experience for me and I'm so sad that so many have to go through it and many more will until something is done. I'm working locally right now - I have been talking to doctors and counselors in my area to make them aware of how horrible withdrawal is and how they can support their patients/clients. I intend to try to reach larger audiences - through my job and my university, I present nationally and have published some stuff, so I think I have the platform to reach people. I hope this doesn't sound obnoxious...I'm just trying to think of HOW this can get to as many people as possible and how I might be able to contribute. I'm doing my dissertation right now so I have limited time, but when I'm done, I would love to do a qualitative study (interviews, etc) on the experiences of people going through antidepressant withdrawal. I have filed a report with the FDA and I would be interested to hear if a class-action lawsuit does make it. Happyzapynot - have you heard lately from that law firm you contacted? Any news there?

I saw in a 60 minutes episode where there was a senator or something who was lobbying for black-box warnings...I'm hoping to look into who is already fighting this fight and trying to join them instead of recreating the wheel. I think there is power in numbers. Maybe this withdrawal is making me grandiose. Who knows. I do know "getting the dissertation done" seems absurd when the room is spinning and I always feel hungover. But this too shall pass (the withdrawal symptoms) but I doubt my anger with Eli Lilly is going to pass...

[rigby941]

I contacted the FDA yesterday..

[TXcounselor]

I emailed the lead lady for the Drug Safety and Risk Management committee and she forwarded me to the Division of Drug Information in the FDA Center for Drug Evaluation and Research (email: DRUGINFO@fda.hhs.gov). I emailed them and received a confirmation that the email has been forwarded to the appropriate person/group, but in a week, I haven't heard anything else. I asked if there is any past or current action involving Cymbalta, especially regarding "discontinuation syndrome".

I signed up for email updates from the committee (https://public.govde...pic_id=USFDA_62) - once you do a general sign up, you go into your email, confirm that you did sign up, then adjust your subscriptions to make sure they're relevant (I signed up for FDA meeting notices, drug safety notices, etc. It also sent me to other pages of possible interest, so I signed up for the National Institute of Mental Health's drug information since they should have specifics on SSRI/SNRIs).

Also, you can go to the FDA site, click on the "Drugs" tab (http://www.fda.gov/Drugs/default.htm) and halfway down the page is a drug search box. Type in "Cymbalta" and good stuff comes up. This article (below) is about a request for fuller disclosure and misconduct on Eli Lilly's part from 2007...apparently it didn't result in any positive changes since it's still not fixed. There's probably more, which i'll wade through later.

http://www.fda.gov/d...a&utm_content=4

I'll keep everyone posted if I hear anything.

[FiveNotions]

To anyone new to this forum or to this thread:

There is a wonderful law firm in California that xman learned about and told us about in a different thread. They has taken on Cymbalta withdrawal...."discontinuation syndrome"..... on our behalf.....on behalf of not just those of us who come here to this forum for support, but on behalf of all those who have suffered, are still suffering, from the nightmare effects of getting off this poison.

They have seen what this drug does first-hand....someone the firm knows personally went through the hard, extended withdrawal hell that we are dealing with!

Contact them, please!

Here is the link to the notice they've just posted to this forum:

https://www.cymbalta...lta-withdrawal/