TonyG-- going off Cymbalta

[TonyG]

I had my 1st episode of depression about 13 years ago at mid-life. I tried several drugs including Lexapro, Zoloft, Paxil, Buspar and Xanax, possibly more. For some of these there was no relief of symptoms, and I was prescribed another drug. I sometimes took 2-3 drugs at a time; a lot of trial & error. But I felt better in a couple years after changing jobs and got off psych drugs altogether, which wasn't that difficult to do.

 

About 5 years later I had a second episode of depression, and was prescribed Celexa, Wellbutrin, Cymbalta, Lorazepam, and Lamictal at various times, including several at a time. This episode lasted longer even though I worked hard to get better-- eg therapy, EMDR, support groups. And I started reading a lot about depression and its causes. I kept wondering, why me? Was it my own fault? Guilt and shame crippled me. Learning about the causes of depression helped to relieve this. I eventually realized that the roots of my depression went back decades to my childhood and the repeated trauma from an alcoholic father who was distant, disapproving and had uncontrolled fits of anger when he was drunk. (I later wrote a book of my own, a personal essay about my search for the origin of my depression.)

 

After a few years on drugs I became determined to get off, having read about the dangers of long-term use. But my psychiatrist kept convincing me to stay on a little longer. This was the 4th psychiatrist I had tried and I trusted him. (I also tried 4-5 therapists before finding one I really liked.) In March I finally got my psychiatrist to agree to help me get off the one antidepressant I was one – Cymbalta 60 mg. He suggested tapering by taking 60 mg one day and 30 mg the next and so on, alternating days for the next 2 months. Well, I felt lousy much of the time—weak, lightheaded, dizzy. I’ve had other health problems—eg torn cornea, return of a pinched nerve, carpal tunnel—but I couldn’t blame the antidepressant or the tapering for these.

 

A couple days ago I received an email from the administrator of SurvivingAntidepressants.org, who had seen a book review I wrote on Robert Whitaker's Anatomy of an Epidemic. In it I mentioned that I had finally decided to start tapering off my antidepressant. He suggested I visit this site, where I first learned that alternating dosages daily can be harmful. I didn’t know that and trusted my psychiatrist to know what he was doing. I now see that I have to learn more on my own about tapering, which I’m doing.

 

I’m currently on 30 mg of Cymbalta daily; I need a plan for gradually tapering off. It’s not easy because the drug only comes in dosages of 20, 30 or 60 mg.

[Altostrata]

....In March I finally got my psychiatrist to agree to help me get off the one antidepressant I was one – Cymbalta 60 mg. He suggested tapering by taking 60 mg one day and 30 mg the next and so on, alternating days for the next 2 months. Well, I felt lousy much of the time—weak, lightheaded, dizzy. I’ve had other health problems—eg torn cornea, return of a pinched nerve, carpal tunnel—but I couldn’t blame the antidepressant or the tapering for these.

 

....I’m currently on 30 mg of Cymbalta daily; I need a plan for gradually tapering off. It’s not easy because the drug only comes in dosages of 20, 30 or 60 mg.

 

Welcome, TonyG.

 

"Weak, lightheaded, dizzy" -- classic withdrawal symptoms.

 

You've see our topic on tapering Cymbalta http://survivingantidepressants.org/index.php?/topic/283-tapering-off-cymbalta-duloxetine/ ? It lays out your options.

 

It sounds like you've cut your dosage in half. How long have you been at 30mg? How are you doing now? Have the symptoms abated?

[TonyG]

Thanks Surviving. It's been about 2 weeks now that I've been on 30 mg Cymbalta a day. And no I'm not feeling better yet. The weakness, dizziness & lightheaded symptoms continue much of the time. These are similar to the symptoms when I first became depressed, before medication, so I wasnt sure if it was from the tapering or if was just a return of symptoms of depression. I'll probably try the gelatin capsules to taper down.

[Altostrata]

You should probably stay at 30mg for a couple more weeks, Tony. Another drop now would be a further hit to your CNS.

 

Since the symptoms started when you began alternating doses, it's more likely they're withdrawal symptoms rather than relapse.

[compsports]

Welcome Tony.

 

I am coming up on my anniversary of being med free which is June 10. I slowly tapered off of a 4 med cocktail after being on them since 95.

 

Anyway, when I was on meds, my psychiatrist had suggested switching to Cymbalta because of my concern that Wellbutrin XL was causing tinnitus. I didn't know much about withdrawal at the time but I could tell from reading articles that it would be a very difficult drug to get off of if I needed to.

 

Reading your story makes me so grateful for my choice.

 

Go very very slowly as this is not a race. Because of Cymbalta's very short half life, you may have to taper at 2.5 to 5% of current dose every 4 to 6 weeks vs. 10% for alot of ADS. Some people have had to even wait longer between drops.

 

I am so sorry for the difficulties you are experiencing and hope you feel better soon.

 

Again, welcome.

 

Compsports

[stan]

hi Tony, welcome,

 

13 years, i too,

if you wean slowly and regularly you will be able to reach 0 mg, it needs much time, time is your friend

[Altostrata]

Yes, although there are not as many reports about the difficulties of tapering off Cymbalta -- because it's not prescribed as often as Effexor -- like Effexor XR it is an SNRI, and tapering choices are limited because of the coating on the granules.

 

Tony, effectively you've made a 50% drop in dosage over 2 months. If you want to be very conservative with your next drop, you may want to make it a 5% or 10% decrement.

 

If I were you, I'd wait a couple of weeks before making that decision. If the withdrawal symptoms get better, try the larger drop, if they don't, consider either stabilizing a bit longer or making the smaller drop.

[TonyG]

I'm definitely going to be cautious now and wait a few weeks before another dosage reduction. I've checked the Lilly/Cymbalta website as well as the literature given with the prescription and there's very limited information about discontinuing. All they say really is to 'reduce gradually'. But how do they expect you to do that when the capsules are limited to 20, 30 and 60 mg, and there's no liquid form available? I'm going to call Lilly tomorrow.

 

The comments about Cymbalta's long 'half life' I assume refer to the time it takes to have an effect. It's curious because several times when I forgot to take my daily dose, I felt terrible by end of the day-- pretty much the same symptoms of fatigue, dizziness, light-headed-- but worse if anything. My psychiatrist was surprised to hear this and couldn't explain it. You wouldn't expect immediate withdrawal effects from a high half life drug. There's just too much that isn't understood about these drugs.

 

Anyway, it's great to have this kind of advice and support from a website. Thanks,

Tony

[Altostrata]

Ha! You've discovered the flaw in the advice to "reduce gradually." Doctors don't know what that means -- it's taken patients like us to find out.

 

"Half-life" means the amount of time it takes for the level of the drug in your bloodstream to be reduced by half. Cymbalta does NOT have a long half-life; its half-life of about 12 hours is extraordinarily short.

 

Good idea to call Lilly, although I predict the person you speak to will say this is the first Lilly's heard of the problem! (All the drug companies say that.)

 

You can report your "postmarket" issues to the FDA, see http://survivingantidepressants.org/index.php?/topic/363-report-your-withdrawal-symptoms-to-government-agencies/

 

If you think your doctor was remiss, http://survivingantidepressants.org/index.php?/topic/365-filing-a-complaint-about-your-doctor/

[TonyG]

Thanks, I reported this problem to the FDA. When I contact Lilly I expect a lot of corporate BS; I just want them to know it's unacceptable that they don't offer the product in forms that allow for tapering; that they don't warn users of the dangers when discontinuing including alternating days/dosages; that they don't train doctors who prescribe the drugs about withdrawal procedures or effects.

[Altostrata]

Excellent points, Tony. I agree with you 100%.

 

The leadership of the psychiatric profession also bears some blame in this. Although it has been known for 20-30 years that tapering off antidepressants is necessary to protect patients, psychiatry has issued no guidelines whatsoever about what "tapering" means.

 

Individual doctors are also responsible in that they probably have never made an effort to educate themselves about withdrawal issues and rely on what they hear from drug companies, the media, and chit-chat among colleagues at conventions.

[TonyG]

Surviving-- I fully agree with you about psychiatrists. Individually and as a group they need to learn more about the drugs they prescribe and be ready to provide reliable help when you’re ready to get off.

 

I reported my problem to the FDA (online via MedWatch). I also called Lilly describing my difficulties trying to taper off Cymbalta and asked: why they don’t provide more information about discontinuing Cymbalta; why they don’t make the product available in more dosages or liquid form to allow for gradual tapering; and why they don’t educate the prescribing psychiatrists regarding withdrawal effects and ways to taper off.

 

The woman I spoke to, who was a nurse, was evasive and offered few answers. She said the company does not and cannot make specific recommendations about how the drug should be used or discontinued. She offered no information about the issue of alternating doses every other day. And she said that the company will inform and advise prescribing doctors who call, but otherwise could not say what kind of training the company offers on the drug.

 

I asked when someone would get back to me about this and all she could say was someone from their safety division “may be contacting me.” I replied that given my severe withdrawal effects, this wasn’t satisfactory. She suggested I switch doctors. I told her that these kinds of problems are very serious and are common among antidepressant users and that much more needs to be done by both drug makers and doctors to help people get safely off the drugs when desired. I added that I was writing an article for mental health organizations about this and would include Lilly’s response.

 

I’m going to contact the APA next, then probably the NIMH.

[Altostrata]

That's a typical response from a drug company. Did she at least log your complaint? They're supposed to do that.

 

Go for it, Tony. And don't forget your state medical commission.

[Neuroplastic]

Welcome to the forum, Tony! It takes some time before we reach homeostasis again, but it does happen. Keep us informed about your progress, and if you felt up to it these days, you may want to put your info in your signature - this will allow us to help you better.

[Healing]

Welcome TonyG! And thank you for all the good agitating you're doing! Give 'em hell!

[TonyG]

In the article I'm writing about my experiences/problems tapering down off an antidepressant, I'd like to mention this website as a helpful resource. I assume this is OK with the administrators? I’ll be submitting this article to the newsletter of the peer collaborative where I work part-time, and to a mental health website. My sense is that a personal story describing the challenges and experiences of something like this can be more interesting and impactful than just telling people what to do and what not to do

[Altostrata]

That would be excellent, Tony. We want to reach out to as many people as possible, to reduce suffering and errors that can really hurt.

[TonyG]

I'm tapering also-- from 60 mg Cymbalta 3 month ago down to 30 mg now. Have had terrible symptoms, apparently because my psychiatrist told me to alternate days of 60 mg and 30 mg. Now that I'm on 30 mg for more than a month I feel a little better but still weak and fatigued and often dizzy. Any ideas on how long this will continue? And how do you know whats a withdrawal symptom vs return of symptoms of depression?

[Altostrata]

Since you're in the middle of tapering, Tony, and have already had withdrawal symptoms, in my opinion you can assume your symptoms are withdrawal rather than relapse.

 

Withdrawal symptoms are time-related to withdrawal.

 

Dizziness is a very common withdrawal symptom, see http://survivingantidepressants.org/index.php?/topic/429-dizziness/page__view__findpost__p__5814

 

It's a good sign that now you've stabilized on 30mg, you're feeling a little better. If I were you, I'd stay at 30mg for another month and then see how you feel. It takes the nervous system a while to adjust to the lower dosage.

[Altostrata]

Tony, I moved these posts to your Intro and Updates topic -- to track what's going on with you.

[TonyG]

It's so great having access to the kind of information, advice and support you get here. But it's ironic and sad that you can't get this from sources such as psychiatrists or drug makers. I'm still amazed. I tell people about this website, eg at the peer collaborative where I work, and find that most people are on medications other than antidepressants, eg for bipolar or schizophrenia-- any recommendations for sources of comparable info/advice?

 

Re: my situation-- Since I'm still feeling adverse symptoms, apparently from alternating between 60 and 30 mg Cymbalta, I do plan to stay at 30 mg several more weeks. I'm just amazed at how long the taper process is going to take, and how bad the symptoms can be if you move too fast. If my symptoms don't improve soon, I'm thinking I'll have to do something different, eg consider taking another, less 'addictive' antidepressant temporarily to address symptoms while tapering off Cymbalta. I dont really want to resort to that, but I'm so weak and unable to concentrate I can't even work now. Any opinions or experiences on this kind of thing?

[Altostrata]

Yes, it's a disgrace to medicine that this information is not known by doctors. Such is the strength of denial.

 

Except for benzos, the tapering regimens for all psychiatric medicines are similar.

 

(There are a number of excellent support sites for benzo withdrawal, perhaps one of our members can recommend some.)

 

It's true often people often are on psych drugs in addition to antidepressants. We try to help those people, too. I don't know of any sites specifically devoted to going off antipsychotics.

 

As for your situation, the only medication I've heard recommended to assist tapering off Cymbalta is Prozac -- see Tapering off Cymbalta (duloxetine) If you hunt for them, you can find doctors who are knowledgeable about this method.

[TonyG]

A quick update on my tapering off Cymbalta-- I decided to stay on 30 mg for several months because I had a pinched nerve in my neck that was sapping my strength. I had a procedure in July, a discectomy & fusion, and now feel recovered enough to resume tapering. I went down to 27 mg 2 weeks ago and will soon go down to 24 mg, and so on. I'm assuming 250 pellets per 30 mg capsule is correct-- it looks to be. I didn't count all the pellets because one of the effects of the pinched nerve is some numbness and weakness in my hands, which makes it difficult to do tedious things like work with these tiny pellets. It's hard to believe this is what you have to do to taper down safely-- open capsules and count the little pellets! And I'm finding it hard to find empty gelatin capsules, so I took some cranberry capsules, emptied the contents and used them. Ridiculous. Anyway, I feel OK so far the way I'm tapering down and will continue.

[Altostrata]

TonyG, good to hear from you. I was wondering how you're doing.

 

I would have done the same thing in your situation.

 

250 pellets per capsule is approximate, but if this taper is working for you -- it ain't broke.

 

You can order empty gelatin capsules online from places like Swanson's Vitamins. Try to get the largest -- 000 or 00, they're easiest to open, fill, and close.

[Shanti]

Hi Tony,

 

I used to be on Cymbalta and experienced severely harsh withdrawals too. They were much the same as what I'm experiencing with Paxil, minus the brain zaps and jerking. With Cymbalta I experience akathisia. It didn't seem to take as long though to get over it. The Paxil seems to have longer withdrawal symptoms.

 

I too went through many anti-psychotics and that was a real crazy ride that I barely remember.

 

I hope you are feeling okay. Blessings.

[TonyG]

Thanks Shanti for the good wishes. I was on Paxil some years back and I don't recall having a lot of trouble withdrawing. Maybe I wasn't on it that long, which makes withdrawal easier. Also, I think I was on another antidepressant at the same time. I should have kept records, Oh well,

 

Wishing you well,

Tony

[TonyG]

Just an FYI-- I wrote a 'muckraking' article about my adventures tapering down for the online Journal of Participatory Medicine.... it's at:

 

http://www.jopm.org/perspective/narratives/2011/10/24/more-support-and-information-needed-for-getting-off-psych-drugs/

 

Tony

[Shanti]

Just an FYI-- I wrote a 'muckraking' article about my adventures tapering down for the online Journal of Participatory Medicine.... it's at:

 

http://www.jopm.org/perspective/narratives/2011/10/24/more-support-and-information-needed-for-getting-off-psych-drugs/

 

Tony

 

Very nice Tony. It was a good read.

 

So you're going to go two weeks at each dose? I was just thinking of doing 2 to 3 weeks before drops myself. I was only on Paxil for 5 months and Cymbalta a couple of years. The only thing that is really concerning me now is that I repeatedly get tinitus. I am able to get rid of it with my remedy, but it keeps coming back and I've heard people say it can become permanent. That's a concern.

 

It seems you're not experiencing the mental anguish that some go through, such as the extreme anxiety and depression. That's good.

[Altostrata]

Excellent article, Tony. You articulate some of the key questions, most important that patients are told to taper under the supervision of a physician but physicians know little or nothing about tapering and withdrawal symptoms.

 

This conundrum has infected medicine's use of antidepressants for 20 years.

 

And thanks for the shout-out to SA!

 

Good to hear your withdrawal symptoms are tolerable at drops of 2-week intervals. If they get more bothersome, you may wish to decrease every 3 or 4 weeks instead.

[TonyG]

I appreciate the comments Altostrata. Maybe if everyone speaks out on this and demands better information and support on withdrawing-- from doctors, psychiatrists, drug companies-- then it could have some impact. Drug users are not being heard now or even included in the conversation, so it looks like they need to start SHOUTING.

 

-- Tony

[Baxter]

Excellent article, Tony!

[Altostrata]

I couldn't agree more!

[Crocus]

Tony;

 

Just got the opportunity to read your intro and your article - my hat's off to you! Crocus

[Altostrata]

Tony, do you know how to contact someone at Collaborative Support Programs of New Jersey? I'd like to find out what they know about tapering and withdrawal syndrome.

[TonyG]

You can try Mark Duffy who was running the support group for people considering discontinuing drugs. Mark is the director of operations (mduffy at cspnj.org). I attended the group a few times while I was working there and they didnt seem to want to get into specific issues about drug properties, withdawal sypmtoms etc. But things may have changed-- I believe they were trying to get access to some medical expertise. The CSPNJ website is: www.cspnj.org

 

-- Tony

[Altostrata]

Thanks, Tony. Sounds like Mark Duffy probably would be able to point me in the right direction.