Back to 3.3
Back to 3.3
3.4 Some SSRI users’ views
Past experience with outbreaks of iatrogenic dependence do not inspire great confidence in official assessments of risk; it also underlines the importance of listening to patients’ views. Fragmentary and anecdotal evidence does have serious limitations, and a biased sample can give a misleading impression of both the scale and severity of a problem. Nevertheless, patients’ views have got to be part of the jigsaw and sometimes give strong clues about the nature of possible problems. Far more dangerous than exposure to anecdotal evidence would be the view that patients’ opinions counted for little or were wrong, let alone the conviction that loudest messages in medicine were usually right.
With this in mind, it is suggested that readers themselves drop in on the internet news groups where such matters are discussed. Here one can make up one’s mind on a number of questions: first, are these remotely representative or even authentic views ? This is not always easy to tell, because the SSRIs, especially Prozac, are focal in a sometimes furious good ‘n evil debate. This introduces some uncertainty about the real purpose and origins of some messages, if sometimes for the slightest of reasons. Here are two apparently very personal accounts, completely at cross purposes; the one thing they do have in common is that the first writer doesn’t name a drug and the second refers to only an "ailment", without elaborating:
"Speaking for myself, I know that by trying to wait for my depression to go away (it came upon me in my 18th month of recovery, after many personal tragedies), my depression did not go away, it came upon me with a vengeance, and I tried to kill myself because of it. My doctors wanted me on antidepressants, and I was utterly convinced that that was wrong because I was an addict and I shouldn’t use a drug to get better. I was WRONG. Depression is like diabetes. Diabetes is a result of chemical imbalance and so is depression. My depression was cured after 5 months of using the medication, and I have been off those meds now for many months now, and I feel fine, back to normal. I know many, many, many many people just like me who recovered from depression with medication. Remember that depression is like diabetes, and would any person ask a diabetic to stop taking insulin because it chemically changed them ? So why are people continuing to ask about depression and meds ? Depression is a disease, just like diabetes, cancer, and many other diseases which require a person to take a med to get better" (Internet-1)
"I have been on Paxil (paroxetine) for approx 3 years, along with an assortment of other medications (Deseryl, Trazodone, Elavil and others). I have previously been on Prozac and Zoloft with no benefit. I have had just about every side effect in the book. Dry mouth, blurred vision, headache, tiredness, insomnia, gastro problems, etc. The cure is worse than the ailment. My performance at work has suffered. My attention to detail, my memory, my energy level, even my attitude have all been adversely affected by these medications. Yet I can’t get off them. When I try, I suffer from violent withdrawral symptoms, just like a drug addict." (I-2)
Several groups regularly discuss withdrawal symptoms and many refer to depression descending whenever they try to discontinue. There is also much advice on how to prevent or relieve such problems. Some go into great detail, others are engagingly brief: "I am getting off Prozac, any advice ?" "V e r y s l o w l y . . ." (I-3) There are also exchanges about what dependence is and is not. This exchange between ‘Starr’ and ‘Lisa’ seem to exemplify the kind of non-meeting of minds that must have contributed to every iatrogenic dependence problem there has ever been:
Starr: "... you’re drawing a fine line that most laypersons (or those who haven’t gone through it) don’t understand. ANYthing can be addicting to those who have an addictive personality. It’s not the substance (alcohol, drugs, food, gambling, sex, shopping) it’s the compulsive behaviour behind it. The ‘physical addiction’ is the cravings, the sweats, the mood swings, that happen when the body is suddenly deprived of a substance it has gotten used to. There are physical symptoms when people abruptly stop ADs, but they are different with different people ..." (I-4)
Lisa: "Fine line my backside !! I was addicted to Effexor. Was horrified of the thought of going without it—and for good reason !! I don’t think this physical/mental dichotomy makes sense. If you can’t get by without the stuff, you’re addicted. Effexor IS addictive. I’m off the stuff, but I’ve never been so physically sick in my life as when I was in withdrawal from this awful stuff. It’s really dangerous to make a blanket statement about ADs NOT being addictive. Some—at least this one—are." (I-4)
Allen: "Getting over withdrawal myself, I’m inclined to agree with one caveat. A drug may be addictive to one person and not another. I had a problem with alcohol. Most people don’t. I’m convinced that alcohol is addictive for some people, but not for most. I suspect the same is true of Effexor, that for a minority of people it can be (dangerously) addictive, but isn’t for most. You and I, apparently, have the misfortune of being in that minority, and as far as I can tell, psychiatrists haven’t figured out that we exist. I’m going to make sure I point this out to mine when I go back for my Prozac check up.
"As far as Starr’s ‘addictive personality’ statement - I just don’t buy it. OCD (Obsessive Compulsive Disorder) may bear certain similarities to addiction, but I don’t think they’re the same. Perhaps in some people OCD and addiction revolve around a common substance/act, but I suspect there is still some difference between the two conditions - a difference that is meaningless to the person trying to recover of course" (I-4)
In this exchange, ‘Allen’ makes two points worth highlighting. First, he was switched (interval unknown) from the SSRI with the shortest half-life to the one with the longest. This accords with widely recommended professional opinion in the US and rather implies that people at most risk of dependence problems may be drifting towards long-term use of fluoxetine. Secondly, the reference to a previous alcohol problem would probably put most doctors (and all pharmaceutical companies) in mind of a diagnosis of "dependence-prone personality", which would focus attention away from the drug. For the record, the DSM-IV (1994) "Diagnostic criteria for F60.7 Dependent Personality Disorder" are as follows.
"A pervasive and excessive need to be taken care of that leads to submissive and clinging behaviour and fears of separation, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
(1) has difficulty making everyday decisions without an excessive amount of advice and reassurance from others
(2) needs others to assume responsibility for most major areas of his or her life
(3) has difficulty expressing disagreement with others because of fear or loss of support or approval. Note: Do not include realistic fears of retribution
(4) has difficulty initiating projects or doing things on his or her own (because of a lack of self-confidence in judgement or abilities rather than a lack of motivation or energy)
(5) goes to excessive lengths to obtain nuturance and support from others, to the point of volunteering to do things that are unpleasant
(6) feels uncomfortable or helpless when alone because of exaggerated fears of being unable to care for himself of herself
(7) urgently seeks another relationship as a source of care and support when a close relationship ends
(8) is unrealistically preoccupied with fears of being left to take care of himself or herself
It is not hard to imagine from this how someone isolated and in much distress might come to feel that a drug seemed to "care", to protect against being "alone", and to offer something in place of relationships and "others". However, it is not clear whether withdrawal symptoms would then be more likely to strike - only that, if they did, such a person would have unusual difficulty coping, and therefore be more likely to keep taking a drug. That risk would be so much the greater if first impressions of the drug were very positive, as many discussion group correspondents indicate they are:
"I was on Prozac for about 6mo’s with fantastic results ..." (I-5)
"I’ve been on Effexor for five months now ... the first dose helped within 12 hours ... I was suicidal, and it was a blessed relief ..." (I-6)
"After five months of awesome results on Prozac ..." (I-7)
"I have only been taking Prozac for about three weeks now. The first week was great. I felt like a new person. I was able to say, do and be more comfortably than for a very long time ..." (I-8)
"I went on Prozac a few years ago. It took 40mg a day to get me well, but it saved my life and I was happy for 2 years" (I-9)
"I was on Paxil for 4 months. It was great for three months ..." (I-10)
"I’m dysthymic, ie chronically ‘mildly’ (ha ha) depressed, and Prozac worked great for me for about a month ..." (I-11)
"I started on Prozac in early October at 20mg per day. After a month, people around me noticed I was in a brighter, more cheerful mood than before and I noticed that I had more energy to do things ..." (I-12)
For all the uncertainties of interpretation, many of these discussions seem to point in useful directions, both in favour of drug treatment and against. On the positive side, many people emphasise they have been helped, including many who indicated no great problems stopping their drugs when the time came. On the other hand, the experience of many others suggests that health-care providers have not yet got to grips with the non-problem they imagine this to be. In particular, there are frequent references in discussion to two phenomena which traditionally signal some increased risk of dependence: escalation of dosage and drug tolerance.
When practised unilaterally by patients, dose-raising behaviour is regarded as clear evidence of dependence. This is underlined by the old definition of "Dependence of the Barbiturate Type",(WHO, 1964) and the advice based on it in the British Medical Journal. It was suggested that regular prescribing of around three-times the usual dose might signal trouble:
"Prescriptions for 100 tablets of the standard therapeutic dose given as a hypnotic and used within or repeated at the end of a period of four weeks ... are approaching the borderline of safety and crossing that of common sense. A condition that requires heavy sedation for a long period must be shown to be unresponsive to fundamental treatment before the purely symptomatic is allowed." (BMJ, 1964)
When doctors increase drug dosage, it would normally give evidence of professional care, an attempt to bring dose in line with a patient’s needs and clinical response. But how far can/should this process go? One ‘naturalistic’ study, involving analysis of 21,000 SSRI prescriptions for outpatients at a US urban teaching hospital, found that a mean 5% of patients on fluoxetine and 15% on sertraline "had their daily dose increased with each prescription refill during the first nine prescriptions". (Gregor et al., 1994) Doctors may find it hard in some cases to know where to draw the line. Patients may too:
"Question: I am taking 80mg of Prozac daily with my doctor’s permission. I want to take an additional 20mg but my doctor says 80mg is the most they will allow. I think the additional dosage would be beneficial. How dangerous could another 20mg be ? 80mg helped me to overcome most of my depression, obsessive/compulsive behaviour, so I don’t see how an additional 20mg would hurt me. Any advice would be most appreciated - Gregg" (I-13)
"Hi Gregg: When I first started Prozac 5 years ago I asked my doctor what would happen if 20mg didn’t help me. At that time he said that if I didn’t notice an improvement at 20mg then we would try a different drug, because if it didn’t work at 20, it wouldn’t work at a higher dose. Last year during my routine check up he told me some patients of his were taking 80mg Prozac. I reminded him about his theory of trying another drug if 20mg didn’t work, but he said he had changed his mind after reading all the research, but that 80mg was as high as he would go with his patients. If that didn’t do it, then he would recommend changing medications. Sue" (I-14)
Dose-raising can be achieved by different means. It may involve a variety of "dosage augmentation" strategies - adding new drugs to the existing regimen, instead of/as well as increasing the dosage of the old ones; or adding other agents to ‘boost’ the effects of the main medication; or switching patients to a higher equivalent dose of another drug.
Switching patients from one SSRI to another appears commonplace, and is in line with recommendations often made in medical journals. In discussion groups, some patients describe this as being on the SSRI "merry-go-round", and often the reason for it is "SSRI poop out". This phenomenon seems closely related to drug tolerance and is well-recognised among virtual patients, though barely mentioned in the medical literature (Rapport & Calabrese, 1993; Reus, 1996). DSM-IV defines tolerance as either "a need for markedly increased amounts of the substance to achieve intoxication or desired effect" or "markedly diminished effect with continued use of the same amount of substance". All of the first impressions cited above, (I-5 to I-12) went on to describe "poop-out" problems as do many others besides:
"I’ve been on Prozac since just after Easter. At first the 20mg worked great, then the effects tailed off. Now I’m on 40mg and that worked great, but once again the effects have tailed off and I’m getting seriously depressed again. Anyone got any idea whats the cause of this ?" (I-15)
"My wife has been taking Paxil on and off for about 2 years in varying doses ... The Paxil has always had a tremendously rapid effect on her. Usually within 48 hours after starting the Paxil she will completely pull out of her depression, even if she was severely symptomatic . The problem is that after a while it seems to stop working ... She is currently at 60mg Paxil a day taken in two doses, she is also taking Klonopin 2mg/day in 4 doses. Just yesterday we started adding 50mg Doxepin at bedtime to try to jumpstart the Paxil" (I-16)
"I’ve been on the SSRI merry-go-round ever since Prozac quit working for me. I was on 20mgs for 5mo’s when it quit working. Bumped me up to 40mgs with no effect ..." (I-17)
"... after taking Prozac for two years all of a sudden it quit working for me even after many dosage increases, my doctor changed me to Zoloft and that work well for about another two years, then the same thing happened it quit working so now I am back on Prozac with success, seems to work for me." (I-18)
"After quitting Prozac, or I should say after Prozac quit working, I hopped on the AD merry-go-round. Wellbutrin, Zoloft, back to Prozac. Switched to a TCA, Pamelor. Now I’m trying Effexor ..." (I-19)
"Things were great on Prozac then it quit working. Went on the SSRI merry-go-round without success. My doc has me on Nortryptyline/Pamelor. I just had a laymen’s hypothesis that if I had such fantastic results with a serretonin specific drug in the SSRI class, then I would have the best results in the TCA’s with a drug that targeted serretonin ..." (I-20)
"Ah, the joys of Prozac Poop-out ! It hit me right on schedule at the 6-month mark. I boosted my dose, it corrected, then pooped out again, although I never sank as low as I did when I was completely off" (I-21)
"I too have gone through an extensive series of meds with some of them working and then stopping (notably Prozac), the first time I tried it two years ago—worked for a month great, then quit; worked again at a higher dose, then quit ..." (I-22)
"My doc has put me on Pamelor and Prozac after Proz quit working about 8 mos ago. Tried others (Wellbutrin alone, Zoloft alone, Wellbutrin & Proz) now trying 50mg Pamelor and 30mg Proz. Has anyone heard of this combo B4 ?" (I-23)
"I’ve been on Effexor successfully for 8 weeks and the same thing happens to me. I go a week or two at a given dose feeling better and then I start to backslide. I tell my psychiatrist and he says not to worry and he increases the dose to the next level; then I feel better. He said that this pattern can go on for several months until you get to the final correct dosage ..." (I-24)
"I had a great result with Serzone—for about 2 weeks. My self-esteem was out of the toilet, everyday things were not overwhelming, and I felt sort of glad to be alive. Then it went away and I’m back to square one. I think it was the first time in my life I experienced not being depressed—I want it back !! Has anyone else had this sort of response to drugs ? I think I’ve been on every drug there is, so just switching to Prozac or Paxil or whatever doesn’t look too promising. Any input would be appreciated ... (I-25)
Hi, I wanted to update all of you who are following the poop-out discussions. My Zoloft pooped out 4 months ago. We added a low dose of Wellbutrin about a month ago but to know avail. My non response may have to do with the low Wellbutrin dosage 75mg. I couldn’t tolerate much more. I started desipramine today. Let’s keep the dialogue going on this topic ..." (I-26)
Withdrawal problems have also been regularly discussed in newsgroup exchanges between professionals; the solution most often recommended is to supply patients with a few tablets of fluoxetine, to taper the withdrawal. Some patients might be expected to benefit from this; others have reported considerable difficulties trying to come of Prozac itself. These and other problems reported by patients have been reviewed elsewhere. (Breggin & Breggin, 1994; Tracy, 1994)
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