Tuesday, June 13, 2006

Stopping Paxil.

This can be terribly difficult. But it can be done. (Note updates!)

I note Dr. Stephen M. Stahl's "dosing tips":
"For patients with severe problems discontinuing paroxetine, dosing may need to be tapered over many months (i.e., reduce dose by 1% every 3 days by crushing tablet and suspending or dissolving in 100 ml of fruit juice and then disposing of 1 ml while drinking the rest; 3-7 days later, dispose of 2 ml, and so on.) This is both a form of very slow biological tapering and a form of behavioral desensitization."
So if a dose was lowered from 20 mg to 19 mg, that would be a 5% reduction. But he's describing a 1% reduction. (As the dose gets lower, the proportion changes, of course.) He adds:
"For some patients with severe problems discontinuing paroxetine, it may be useful to add an SSRI with a long half-life...prior to taper of paroxetine."
He also notes that paroxetine inhibits its own metabolism, making tapering even more problematic for some (i.e., the effect of a dose reduction can be magnified. The patient is not only taking less, he's also eliminating it faster). -Essential Psychopharmacology: the Prescriber's Guide by Stephen M. Stahl, Meghan M. Grady (Editor), Nancy Muntner (Illustrator)

Note! Dr. Stahl and I can't tell you what to do. We aren't your doctors! (See disclaimer in sidebar.)

Why I'm posting this: I notice that I'm getting lots of hits from this site today. (5/20 update: the link has been changed, and now there's no access to this forum. There was much outrage about some psych-blogging, including mine.) There's horrific pain and anger in this thread. Obviously, for many, there's been a complete breakdown in the relationship between psychiatrist and patient. I hope that no one has to go through the pain that they're describing.

Update: related post here. And note, please: no medical advice is given on this blog! (I've come perilously close to breaking my ironclad rule, here.) Eat a healthy diet, look both ways when you cross the street, and talk to your doctor about any and all med changes! Patients should have a doc in their corner, looking out for them!

Yet another update (6/13): Baldrick has an important comment.
"one of the problems with the internet is that large numbers of people with rare conditions/reactions/discontinuation reactions congregate in one place. They may or may not have atypical ideas, metabolisms or disease presentations."
However, I'm afraid that I'm going to have to delete any comment that gives, or appears to give, medical advice. That includes posts that say, "Do this" (whatever "this" is). The issue of whether, and how, and when to stop meds is controversial. Each patient is different. Please speak to your doctor! No medical advice is given on this blog.

22 Comments:

Blogger Joel said...

OK, how about Effexor!

11:57 PM  
Anonymous Anonymous said...

"I hope that no one has to go through the pain that they're describing."

In the clinical trials data that GSK supressed they reported withdrawal symptoms in 61% of subjects. This information can be found in an ABC News story (available online) replete with copies of internal memos, (titled "the next billion"), which instructed drug reps how to euphemistically and inaccurately portray "discontinuation syndrome" to doctors.

4:02 AM  
Blogger shrinkette said...

This comment has been removed by a blog administrator.

7:51 AM  
Anonymous Anonymous said...

Shrinkette:

Below is the link for the ABC expose that I referenced. I believe the piece that aired on television cited that 61% of subjects experienced withdrawal. In this article they cite lower percentages in two respective studies (25% & 42% compared to 6% in the placebo group). In published studies I've seen a range of 12%-80%. I've heard at least one psychiatrist say that 50% of his patients experience withdrawal problems and I've heard of doctors that say that withdrawal doesn't exist. At least among GPs there seems to be predilection to attribute withdrawal-specific symptoms to a recurrance of the presenting condition. Bravo to you for providing informed consent. People should also know that protracted withdrawal syndromes can last up to two years.

http://abcnews.go.com/Health/story?id=311956&page=1

9:06 AM  
Anonymous Anonymous said...

"Obviously, for many, there's been a complete breakdown in the relationship between psychiatrist and patient."

This is an understatement. Psychiatrists have caused me so much pain and suffering in the last 8 years. 8 years ago, I was having some situational depression and anxiety due to a difficult time in my life. I went to see a psychiatrist for help. I spoke to her for about 10 minutes and she handed me a script for Paxil. She said it was a "wonderdrug", very mild side effects, not addictive. Yes, I bought into it and took Paxil. Did it help? Yes, at first. Then came the side effects - weight gain, random dizziness, personality changes, apathy, unable to feel any emotion, headaches. I tried 3 times to quit Paxil and each time I became extremely ill and unable to work - extemely dizzy, nauseous, zaps, migraines, horrible dreams, insomnia, confusion, slurring, feeling like passing out, crying, extreme depression and anxiety, 100 times worse than before Paxil. When I told my psychiatrist this, she said it was my original symptoms returning. Pardon??? My original condition did not come with zaps, thank you very much. I was told a hundred times that Paxil was not addictive by the so-called experts. That was when I turned to the internet and found thousands of people suffering the exact same symptoms.

Now I am weaning off Paxil painstakingly slow because I refuse to be on this toxic drug for the rest of my life. As slow as I am weaning, I still feel sick every single day. Imagine feeling sick every day and not being able to fully enjoy life because you feel like you might faint from the horrible dizziness. Think about THAT the next time you have the urge to write a script for Paxil.

So yes, I do not trust psychiatrists as far as I can throw them. They think drugs are the answer to everything and they try to add more drugs to mask the side effects of the first drug. They get freebies and fancy dinners from drug reps who do not tell the full story. I will get through this and I will survive this horrible nightmare. But I will never trust a psychiatrist.

9:08 AM  
Anonymous foofoo5 said...

Shrinkette has, in my estimation, been unjustly "skewered" simply for identifying herself as a psychiatrist and having a blog. Now, having become the focal point of unresolved rage - and that is not to say the rage is not justified - she is likened to a Judas Goat for the profession. I resent generalizations, be they regarding psychiatry or be they regarding plumbing. Generalizations are always self-serving, often skewed, and frequently dangerous. How mant times have you seen a commericial or general media advertizement for one drug or another? Patients now come in demanding the medication(s) they want, or they will go elsewhere. Unfortunately, they always seem to find someone to accomodate them. "They" do not all think & act alike. "They" do not all accept freebies and fancy dinners. Far more rely upon evidence-based medicine and practice current standards for efficacy & safety. And most importantly, far more actually care about their patients and would never subject them to needlessly harmful consequences. Think about THAT before you generalize all psychiatrists and randomly post one blog as an "example." I for one am very sorry for the apparently cavalier treatment you received, and the terrible outcome you continue to experience. I am also sorry that Shrinkette is the focus of your rage.

10:05 AM  
Blogger NeoNurseChic said...

Reading this post did make me sad, but good for you to take on this topic! I read through the linked comments regarding paxil withdrawal, and it is heartbreaking. I'm so lucky to have found an excellent psychiatrist - the thought of such destructive relationships out there is infuriating and very sad...

Oddly enough, I first learned about Paxil withdrawal by reading an article in Glamour magazine several years ago. I used to keep that article bookmarked on my old computer. It's prevented me from ever taking paxil, although I think it may have only been recommended to me once.

Prozac alone took me at least 7 months to get off of. I was placed on it for "fibromyalgia" and the short-release form made my hands shake. I got that side effect whilst I was a piano performance major. My neurologist switched me to the extended release, and my hands stopped shaking, but I didn't notice the change in my personality. I didn't care about anything. I was premed along with majoring in music, and I was taking a chemistry 2 course that semester. I remember that I got a 42% on one exam (I was previously a straight A student)...I looked at the grade and said, "That sucks...What's for dinner?" It was so uncharacteristic! One afternoon I met my mom for lunch, and she said that I needed to get off it as soon as possible because it had changed my personality. It still took quite some time before I was able to get off it. Every time I tried, I ended up back where I began. Haven't taken an SSRI since, although a trial with Cymbalta was also quite an unpleasant experience for me!

My dad and grandmother both take paxil. When I saw the meds they were prescribed, I was really concerned. Both are prescribed by family doctors. I doubt either my dad or grandma were informed about the withdrawal effects. I can't imagine my dad would have agreed to take it if he had known what it can potentially do...

Thanks for writing this!

10:12 AM  
Blogger Fallen Angels said...

Ok...I must be some odd-ball. I have been on and off paxil for about 4 1/2 years. On when doc remnds me I am supposed to be taking it, off wehn i just plaine forget to take it (for months) and, Yes, I know you aren't supposed to do that, I'm working on it. My point though is, I have never had withdrawl symptoms...none. And the only side effect I have had is weight gain (possible) that may have actually been the rispeidone since I started dropping weight when I went off that.

11:00 AM  
Blogger Fallen Angels said...

Forgat to mention...I agree 150% with foofoo5 .

11:03 AM  
Blogger NeoNurseChic said...

I agree with Foofoo5, too. There is danger in generalisation... I've been working with my psychiatrist for almost 2 years now, and he has never prescribed an antidepressant for me. The only med he has been prescribing is concerta, which I was on before starting to see him. And yet, he's worked with me once or twice a week for nearly 2 years. Not all psychiatrists are med pushers. He has worked very hard with me to try to simplify my med list and reduce excessive medications, tests, etc.

And regarding feeling sick every day - it isn't as though people feeling side effects from Paxil are the only ones who feel this way. Sometimes paxil is tried in a valid attempt to help those who do feel physically sick every day...and for some, it does help them. I also feel sick every day and it's often that I actually do experience nausea and vomiting but have to go to work anyways. I'm a health care professional, and I'm pretty sure there are psychiatrists out there who probably also go through feeling sick every day for some reason or another, too. Just have to keep an open mind about the fact that we're ALL people, and we all have the ability to get sick to a disabling degree.... And that's quite enough from me on that topic!

11:12 AM  
Anonymous lurker_joe said...

thanks. it's good information to know. and yeah, sorry if other people get angry at you. a lot of docs don't listen but some do.

3:13 PM  
Anonymous Anonymous said...

foofoo5, there is no rage in my post, you have interpretted it incorrectly. I simply said that I do not trust nor will I ever trust psychiatrists because ever single one that I have seen has tried to throw medicine at the problem and does not listen to me. Meanwhile, I am sitting in the waiting room with at least 2 drug reps half the time. You are right, not all psychiatrists do this and there are some good ones out there, but it's fair to say that most do. One of the tv stations sent a reporter to like 25 psychiatrists where she described some mild depression and nearly ALL gave her a prescription for an SSRI in just one visit.

I'm sorry you interpreted my post as rage, it was not meant to sound like that. It was just an honest true to life experience that I wanted to put out there.

4:05 PM  
Blogger shrinkette said...

Anonymous: I value your comments. Thank you.

4:44 PM  
Blogger Kat said...

I just got off Paxil 3 weeks ago. I took 4 months to do it, going from 40 mg to 30 to 20 to 10 to nothing. I was fine, just a little irritable and tired during the week after each drop. Side note, I am on Effexor 150mg as well - was on that long before the doc decided to stop the Paxil.

6:30 PM  
Blogger gadgetgrl said...

I went off celexa cold turkey with no problems in the past.

Started effexor just recently and although reading about the hell people have gone through with withdrawl symptoms makes me nervous but I know for sure that the meds saved my life. Maybe that clouds my judgement about this- I can't imagine a place darker and more terrible then the depression/panic disorder without treatment with meds. I don't know

8:32 AM  
Anonymous Allison said...

Shrinkette, thanks for tackling issues like this one. I have no experience with Paxil (my pcp actually listened when I listed the side effects I wanted to avoid), but did have to wean myself from Effexor very carefully.

A few years ago, I picked up this book. Once I got over my righteous indignation (but I NEEDED the meds to help me out of my depression!), I realized that he wasn't condemning all meds, but the overuse and reliance on them that anonymous has encountered. It's worrisome that our healthcare system is biased toward medical treatment of mental and emotional issues. While depression is, indeed, a physical condition, it's often sparked by real issues in people's lives. Effexor worked for me, for a while, but eventually the unresolved stuff in my life caught up with my drug dosage. Only after I worked with a caring, compassionate, and skilled counselor was I able to move on.

Would it be too much to hope that "the establishment" would recognize a-d drugs for what they are, one single tool in a complementary approach?

9:26 AM  
Blogger Spiritual Emergency said...

While depression is, indeed, a physical condition, it's often sparked by real issues in people's lives.

A few years ago I went through a schizophrenic break which was followed by a very severe period of depression that lasted for quite a long time. Part of the reason I didn't take anti-depressants at the time was because my sadness had a logical component to it -- I had lost a number of things that I'd loved, and in such instances, felt that my sorrow was an indication of "normalacy".

If however, I found myself feeling terribly sad when everything in my life was going very much my way, I would personally interpret that as a sign that antidepressants might be warranted. Naturally, those are my own comfort zones. Individuals vary in their personal definitions.

10:58 AM  
Blogger Shea said...

I feel morally obligated to communicate to the general public the dangers of SSRIs, as I was grievously injured by taking and subsequently discontinuing the drug Paxil. SSRIs are so commonly prescribed that approximately 1 in four women, in the United States, is taking one of the medications (Zoloft, Paxil, Celexa, Lexapro, Prozac) within that class of drugs. This is a frightening statistic, as the risks of using SSRIs by far outweighs the possible benefits, of which I have seen none. In fact, SSRI use and discontinuation has not only the potential to, but has completely destroyed many lives.

I was placed on Paxil by a general practitioner (I'd never seen a psychiatrist), for mild depression, at age 28, whilst I was going through a divorce. My doctor said Paxil had few transient side effects, was non-addicting, safe and effective. He said it would "keep my lows from getting too low." I didn't notice a difference in how I felt, emotionally, after I began taking the drug, but I did begin to have adverse reactions to it, unbeknownst to me. After about six months of usage, I began to have episodes, wherein I would feel a tingling sensation that would start in the back of my throat and quickly spread throughout my entire body. My muscles would become so weak that I would do no more than collapse or crawl. My heart would race, generally beating between 150-200 bpm. My blood pressure would vacillate wildly, from one extreme to the other; from high to low and back again. I would sweat buckets one moment, unable to move, then freeze the next, accompanied by uncontrollable chills. My breathing was labored. I could not take a breath involuntarily; I had to force my breaths, which were quick and shallow, using the strength of my diaphragm. Each time this would happen, I was convinced I would die. All I could do was remain calm and concentrate on my breathing. I had no idea these cardiovascular episodes were related to taking Paxil. I now know, via consultation with a neurologist/psychiatrist, Dr. Robert Shipko, that what I was experiencing is called dysautonomia or a malfunctioning of the autonomic nervous system. Unfortunately, It was never suggested to me by ER physicians at Kaiser Permanente, that Paxil could cause a severe autonomic nervous system malfunction. In fact, the Kaiser physicians determined that I was having an "acute allergic reaction" to.......something. Thus, began the journaling and medical testing necessary to discover what it was that I was allergic to. When tests ruled out allergies as the source of my problems, I did research, via the internet and found that Paxil could cause fatal arrhythmias, myocardial infarction, ischemia, dysautonomia, amongst a myriad of additional physical maladies. A cardiologist confirmed my suspicion that Paxil could be the cause of my episodes, and as my cardiovascular/respiratory problems became more frequent and severe, I realized I had no choice, but to discontinue the drug. This sent waves of fear through me, as I had tried to come off the drug and summarily failed, four times previously. I got so violently ill when I tried to discontinue Paxil, I resigned myself to being on the drug for the rest of my life, as each time I "reinstated" all of my extreme illness would vanish. Each time I made an attempt to discontinue the drug and, thus, experienced physical symptoms, my doctor would simply drone the mantra he must of learned from the pharmaceutical sales reps: "It must be your depression relapsing. Paxil is non-addicting. Continue taking the medication." Excuse me?? I NEVER had physical symptoms associated with emotional distress, other than a few tears and feeling somewhat lethargic. I had never even lost sleep and, now, after being "treated" for a mild depression, I was felt worse than I had ever felt in my life.

I remained a prisoner of this drug for almost five years, and with each passing year, the ER visits became more frequent and the episodes more severe. Then, I met and married my new husband. I felt confident, with his support I could successfully discontinue Paxil. I knew I was in trouble because of my previous withdrawal experiences, so I contacted a psychiatrist who advised me to taper off the drug. This was the first time I had seen a psychiatrist, while on Paxil or ever heard the term "taper" from anyone. Unfortunately, I experienced such severe autonomic nervous system disruption, at 10 mg (down from the original 20 mg dose), that I had no choice, but to "cold turkey" off the drug, which is not advised, even by the pharmaceutical companies who had gone to such great lengths to convince doctors (mine included) that the drug was non-addicting, safe and effective. I had NO IDEA what was in store for me. What I expected, as it was what I was told was that I would experience "rebound symptoms" for 2-6 weeks (of course, even this is contrary to what I was told when I was first placed on the drug). I was SEVERELY ill for 12 FULL MONTHS. Following my discontinuation, I had seizures, tremor, muscle spasms/extreme tension/jerks/twitching, agoraphobia, never ending panic attacks, heart palpitations, chronic nausea, diarrhea, severe insomnia, rage, profound depression, suicidal thoughts, gestures and attempts, was diagnosed with "psuedoparkinson's disease," had paraethesia (horrible burning skin), akathesia, obsessive thoughts, aphasia, cognitive deficits/memory lapses (I could not drive without running redlights or stop signs, as my brain seemed incapable of associating a redlight with the stopping the car), coordination problems and an inability to feel love or joy. The year long "acute discontinuation syndrome" BEGAN within a week of stopping the medication. I have NEVER in my life experienced anything even remotely similar to what I went through for an entire year of my life, not before or during Paxil "treatment." I have been to hell on earth. I was the living dead. I couldn't ride in a car, socialize with friends, go to the movies.......anything that a normal human being does........that I used to do; the anxiety was that profound. Everything I once loved I newly dreaded. This experience almost destroyed my new marriage. My poor husband couldn't help, but ponder whether or not I had lost my mind. He was assured by everyone who had ever known me that who I had become was NOTHING like who I ever was. He stayed with me, thank God, because without him, I would have never made it through this horror. He now wishes he'd been more understanding of what it was I was going through, as I have improved so vastly that he not only recognizes the improvements, but cannot believe what had to have been going in my brain to cause such emotional and physical devastation. I became a complete stranger to myself and anyone who ever knew me. Though I experienced movement disorders when I discontinued Paxil, the injury is not visible to the human eye. This isn't a broken leg. This is a traumatic brain injury. I found it almost impossible to communicate adequately the misery associated with the horrible burning sensation that plagued the surface of my skin for months on end. I could not convey the depth of despair I had seen or the twisted thoughts that continually bombarded my consciousness. He could not see this with his eyes that I was barely surviving. After a year's worth of "recovery," I began to re-emerge, very, very gradually as the woman he had married. As I inch my way toward recovery, he becomes more incensed at GSK for what it was that I have been through and still suffer today.

I am now 21 months post-Paxil. I disappeared from everyone and everything that ever meant anything to me for almost 16 months. I am now, gradually crawling out of the pit of despair I was cast into, but it's been a very difficult and slow process. What's more is that I couldn't "treat" any of these horrendous symptoms with talk therapy or other drugs. The talk therapy would have been completely ineffectual, as this was a physical injury and drugs would have further insulted my already injured brain. All that has treated this malady is time. I am now able to work part-time. I can, once again, go to the theatre, store, drive, be alone, sleep (usually) and interact with others without much of the crippling symptoms of Paxil's "discontinuation syndrome." I do have some residual of the aforementioned symptoms, which come and go, but I can't imagine that after 12 months of unmitigated hell I could escape such torment without some lingering problems. I still have tingling sensations in my hands and feet, occasional insomnia, wherein I awaken, in a very alarmed state for no reason at all and cannot return to sleep, free-floating bouts of depression or anxiety (for no apparent reason), headaches, occasional nausea, tinnitus and paraethesia (burning skin, albeit a milder version of what I initially experienced) if I feel stressed. It seems any stimulus, good or bad, has a negative effect on my fried central nervous system. Needless to say, these symptoms are very frustrating, but a profound improvement from where I was just six months ago. I expect with time, these lingering problems will disappear as well, but I don't know if I well ever fully recover from the trauma that I have experienced. I may recover, but I can never, ever forget. I am happy to report that my cardiovascular and respiratory problems are completely resolved. I no longer visit the emergency room twice a week, so as to slow my heart rate. My Cedar Sinai cardiologist, who was absolutely certain that I had to be medicated, with atenolol, and even recommended an ablation, during the early stages of my discontinuation, was absolutely taken aback by the spontaneous recovery I have experienced, following Paxil discontinuation. My records read "heart problem resolved, six to eight months after discontinuing Paxil."

Paxil remaining on the market is unacceptable to me. It is my wish that this drug be exposed for what it truly is: A neurotoxin that disrupts and chemically damages the brain, particularly after prolonged exposure. I feel as though I've been recovering from a stroke over the past 21 months. I am not alone. Please visit www.paxilprogress.org, wherein you will find hundreds of stories like mine, many of whom had only mild depression, or shyness or nail biting or migraines or back pain, and for which were prescribed Paxil. Please consider bringing our stories to light.

Thank you so much for taking the time to read and consider my story.

Sincerely,
Shea Carney

11:38 PM  
Blogger Joel said...

Thank you, Shrinkette. You are a goddess.

8:28 PM  
Anonymous Anonymous said...

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4:32 PM  
Anonymous Zappity doo dah said...

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8:51 AM  
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11:22 AM  

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