Wednesday, March 21, 2007

Medicines: The Good, The Bad, & The Ugly


So we started this line with Why I Still Prescribe Seroquel (see post below with it's 58 heated comments), ClinkShrink continued it with her Max & Me post which drew in my dog, and it got me thinking about a discussion on medications in general. I started with Life Is Full of Risks as the set up for this, so if you're still along for the ride, thanks for listening. And if you've seen Roy...it seems he Quit his Day Job then disappeared. I'm hoping I don't have to have those floor boards pulled up again.

I work in Free Society -- a term I learned from ClinkShrink who works in the jails. My patients are all adults and with few exceptions, they seek my help of their own accord. Often they come with a request for medications, sometimes a request for a specific medication--something that's helped them in the past, something that's helped a friend.

So humor me while I talk a little about medicines.

The Good
Medications are prescribed by doctors to target symptoms, to target abnormal laboratory or radiologic findings, or to prevent the development of disease in at-risk populations. Symptoms are things like pain, insomnia, hallucinations, cough, angina, heartburn. The goal of medication is to relieve the symptoms. Abnormal laboratory values are things like elevated glucose levels in diabetics, low red blood cell counts (anemia), elevated cholesterol. Examples of medication given to healthy people might include aspirin to prevent heart attacks, or the ill-fated Hormone Replacement Therapies that were given to women in the hopes of preventing heart disease and
osteoporosis, Lithium for bipolar disorder that is continued between symptomatic episodes. I didn't get it all-- fit chemotherapy for cancers, anti-hypertensives, and a slew of other medications where you will. At any rate, the point of the medicine is to get rid of something bad or to prevent something worse from happening, or both: anti-hypertensives normalize blood
pressure and prevent end-organ damage --end organs for high blood pressure are the retina, the kidneys, the coronary arteries, and the cerebral arteries-- so the goal of them medicines is to normalize the numbers and prevent strokes, blindness, and renal failure.

So the good: medications sometimes work. In some people, some of the time, they make the bad things go away and they allow people to live healthier lives longer.

The Bad:
The bad thing about some medications is that they have Side Effects. Side Effects are results of the medications that are nearly always unwanted, kind of the weeds in the garden. Symptoms in their own right, they happen, with some regularity, and sometimes we even use medications for their side effects rather than their primary purpose. So trazodone is an antidepressant, but it makes a lot of people sleepy, so it's used in sub-therapeutic (for depression) doses to help with insomnia. Mostly, though, side effects are bad-- they are uncomfortable for the patient and are often a reason people will stop medications. It's great if that medicine strengthens my bones so I won't break them later, but not if it gives me intolerable Side Effect X now. Side Effects are uncomfortable, they aren't fatal, and they are reversible, they go away when the medication is stopped, and for certain medications, certain side effects are fairly common-- if Ibuprofen upsets your stomach, you're not alone.

What's interesting about side effects is that few of them happen to everyone. So a lot of people will have sexual side effects from SSRI's, but certainly not everyone. Some people will have a tremor from lithium, some will get tired on thorazine. Certain cancer chemo therapies cause everyone to lose their hair, and dry mouth on therapeutic doses of tricyclic antidepressants (at least in my personal observation) seems to be par for the course, but many side effects seem to be fairly random. Many psychotropic medications are known to cause weight gain, and that has been a topic of concern in the comments on Shrink Rap, but I've certainly seen plenty of people take medications that are associated with weight gain who never gain weight. We don't know who will have side effects, kind of like we don't know who any given medication will work for, and because of this, it really becomes impossible to tell patients anything more than a list of the more frequent side effects with this implicit understanding that other side effects may also occur. Pharmacies provide lists, but it's hard to be comprehensive. From the doctor standpoint, there is no guarenteed free ride: when you swallow a pill the possibility of a side effects are there and largely unknown. For the patient who is struggling with a condition that's impeding his life, as many psychiatric patients are, it may be worth taking the risk of any given side effect because that side effect may simply not happen. Since weight gain is a hot topic, I will say that I've seen patients have good responses to Lithium, Clozapine, and Zyprexa (all notorious for causing weight gain) who've not gained an ounce. Other's have inflated like balloons-- the only good news here is that the weight goes on a pound at a time and the medicine can be stopped if the weight starts going on. The problem, of course, is what to do when the patient has a good response to the medicine but also has side effects: unfortunately this scenario leaves the patient with difficult choices.

The Ugly:
Side effects are unpleasant, but often anticipated, and reversible. Many medications have really rare and really ugly effects-- these aren't side effects but Adverse Reactions. They can be awful, and they can be fatal and they can be irreversible. So Stevens-Johnson Syndrome, fulminate liver failure, and agranulocytosis are not side effects, they are life-threatening adverse reactions. Tardive Dyskinesia is an Adverse Reaction, though one that takes time to develop. Adverse reactions are the stuff of Black Box Warnings. The usual response to the Ugly is to stop the medication ASAP.

So what do I tell patients?
Mostly, I tell patients the more common side effects and of any black box warnings. I don't know, off hand, every side effect of every medication. If a patient asks in more detail, I open a PDR and read from the list of side effects. I offer reassurance that the medication can be stopped if side effects develop. I can offer no real guarantees about the possibility of catastrophic reactions-- though generally these are less then the risk of getting into one's car and usually I'm left to say "I've never seen that." A friend recently had a patient experience a life-threatening really rare reaction to a medication (one not listed in the PDR) and for a while after I told any patient I started on that medication about this patient's reaction--- no one refused the medication even after hearing the story. My friend says she will never again be able to prescribe that medication. Rational? No, but our own experiences are sometimes more powerful than statistics. In the case of side effects, ultimately the patient is left to decide if the cure is worse than the disease. In the case of an adverse reaction, I stop the medication and don't restart it.

Sometimes, in some patients, the medications simply relieve the symptoms without any ill effects. It's nice when that happens.

22 comments:

jcat said...

As a reasonably well-informed patient, I still go back to my original starting point:

Psych meds work, more often than not, and, for most people, with tolerable side-effects. They wouldn't have got to market if they didn't generally do more good than bad.

And the chances of a really serious side-effect are, to me, still better odds than the suicidality I wake up with every day.

Parked said...

A very honest post. I have known patient's that are more than happy to put up with side effects when quality of mental health is restored. Every treatment has it's freaky side effects seen by a small percentage of patients. The problem is that even with one patient encountering an adverse reaction on a certain med--that means it did and can happen again. In this instance, one is not the loneliest number.
I actually research upcoming trials for treatment for adult chronic leukemia. In this scenario, I know too much about the significance of "One". My husband also has leukemia. The side effects of treatment can be life long vs. short term. Once again relativity comes into play. Gaining 10 pounds to tap into one's "happy factor" again is well worth it. Every CLL patient I know would pick a weight gain over living with this incurable immune compromised cancer.

Outis said...

for the patient, i think, (& aside from one's political views of "big pharma," one's view of "using a crutch" [as opposed to abusing a crutch, which is OK], &c.) it comes down to something entirely subjective. how much does it seem to help vs. how much does it seem to hurt, and how long am i willing to "give it a chance?" that last depends on so many things, including the patient's relationship to the psychiatrist--and since so many of the shrinks i've had were so stiff, mean, or otherwise not warm'n'fuzzy, trust in a psyc doctor might be hard to come by.

i never noticed the side effects of any antidepressant i was ever on while i was still drinking. but after i stopped and got on effexor, i discovered that i would develop a raging hangover (side effect? withdrawal? "disontinuation syndrome"?)--clean & sober--every time i forgot to take my dose the night before. and it didn't even seem to work that well. now, with the lithium and lamictal to support it, it does OK. but if i didn't like my dr. so much this time around, i'm not sure i'd've stuck with it.

these drugs are not miracle-cures for a lot folks i know, though. they help a little so we can go to work and develop relationships and work in therapy on deeper issues and maybe be more OK some day.

do appreciate the honest post, though. and love your blog. sorry my comment's so long.

Midwife with a Knife said...

I don't mean to be insulting, but I don't understand why people see shrinks they don't get along with. I mean, I won't see a primary care doc I don't click with, and I would think that a reasnoable bedside manner and a reasonable amount of "clicking" is even more important in the patient-psychiatrist relationship. Is it just a matter of once someone's come up with the courage and wherewithall to go see a shrink, it is so hard to do it again to find another one? Again, I have no intention of being insulting or critical, I'm just wondering.

tangent 90 degrees said...

MWAK: I couldn't agree with you more! When I reappeared at my psychiatrist's door for an appointment after my Tegretol-induced liver transplant, he was surprised that I didn't harbor any ill will towards him. With the buckets o' rejction meds I was now taking I didn't have time...that and the fact that we had a great relationship.

Since my intimate encounter with an adverse drug encounter, I am a little skittish whenever anything new is introduced to my pharmacopia. I do the usual: conversations with my doctor, do the usual research, talk to friends who take the same drug.

Even after all these efforts, I was quite the sight last summer. We decided to try Lamictal. I had been cautioned to keep an eye out for the DREADED RASH! Oh my god! Good thing I live alone. I would have driven anyone living with me nuts. Anytime clothes went on or off, I stood in front of the mirror and examined my body. The upside was that I did check out freckles and moles that hadn't been checked in months :)

Dinah said...

jcat: sounds like your decision was easy!

parked: best of luck, what a lot to deal with.

outis: thanks for the nice words about the blog! I sure hope my patients don't think I'm stiff, mean, and not warm & fuzzy. I have a lot of hair (I mean a lot), so I do think I'm pretty fuzzy.

mwwak: you are right, it's very important to click with your Shrink, to trust him/her, to feel comfortable--at least most of the time, occasional glitches are inevitable in any intimate relationship. I think the issue of seeing shrinks one doesn't like depends on availability in places where there is little to no choice and if one sees a psychiatrist who is reimbursed directly by health insurance, the insurance companies make this financially feasible for the doc only if they see lots of patients, and when one is pressed for time, sometimes one comes off as cold and uncaring-- maybe I'm writing excuses, or maybe it's just bad chemistry... I too wondered about seeing a mean shrink.

Tangent: Wow! What an awful story and I'm glad you survived your transplant. I tell anyone I put on Depakote about the possibility of fulminate liver failure (though I admit, I tell them it's very rare and most likely in small children on multiple seizure meds and I've never seen a case). I don't warn anyone about this with Tegretol, because I've never heard of it (with this med, I caution about infection and white blood counts dropping)--- I looked it up online and still didn't see liver failure listed as a risk....induction of enzymes, yes, but transplant-requiring failure, no. I bet your shrink is really really careful with tegretol from now on.

DrivingMissMolly said...

MWAK,

I "put up with" shrinks I don't like because in my opinion, *sometimes* my not liking them is part of my illness. Plus, thank goodness, we don't see them that often. Right now I see mine once a month.

I idealize my Shrink one day and hate him the next. Yesterday it took him 6 hours to return my call so I hate him now (I also didn't answer the phone because I was so angry). I also recognize that my "borderline traits" mean I swing from one pole to another so that I question the ligitimacy of "hate" or any other feelings I may have. That's why I didn't cancel my April 10th appointment!

Now, to be on topic, I'll talk about bad drug experiences.

First, when I was hospitalized for the first time, I was given Haldol. I was 20 and completely trusted this doc. My tongue and body started to freeze up and I had weird movements (dystonia I think it's called). He never warned me. Worst of all, when the nurses paged him so he could order the "antidote" (Cogentin), he wasn't returning the pages. The nurses threatened to put me in seclusion because I was very upset and scared.

I've also had bad experiences with lithium. FYI, just because you're bloodwork is OK doesn't mean that bad side effects such as sweating bullets and having leg cramps can just be dismissed!

In my experience you don't get good info about drugs from shrinks or even other docs. I rely on myself to look things up and I will call a pharmacist for info if necessary.

The one exception to the poor info was my former shrink, a third year resident. That was only after some bad experiences with drugs we tried, though.

I think maybe it's generational? I think paternalism, benevolent or not, is alive and well in psychiatry, indeed, maybe in all of medicine to a certain extent, especially among psychiatrists "of a certain age."

I am grateful I am not so f'in out of it that I can't figure a lot out on my own. Frankly, I worry about those that are.

We go to shrinks because we have to, because our GPs won't touch us with a 10 foot pole when it comes to psychiatric issues (good thing).

Patients that are with it, "YOU HAVE TO BE AN EQUAL PARTNER IN YOUR HEALTH CARE"

This last time, when I made my follow up appointment a few days after I saw him, I called the office and told his sect'y to please remind Shrink to order lab work for my lithium levels.

It hasen't been done in about 3 months now, DUH!

Lily

Violet said...

MWAK: I'm my attempt to get treatment for my depression, anxiety, and other issues I've met with a few psychiatrists over the last 14 years. I didn't get along with any of them, I didn't feel like they understood my issues, and they didn't seem kind or helpful in anyway, so I didn't go back, but then it would take me around 4 years to try again. I'm still untreated, so not going back isn't always the best choice.

Alison Cummins said...
This comment has been removed by the author.
Alison Cummins said...

MWAK: I can’t speak for all psych patients, but I try very hard to be good. I’m pretty judgemental of myself.

When you’re feeling ok you decide now would be a good time to find a primary care physician, or let’s say a dentist, you ask around and you make an appointment with someone who’s been recommended. If you don’t like who you see, you don’t go back. No biggie. (I really like my current dentist who I’ve been seeing for years, and have never gone back to see a dentist I didn’t feel good about.)

If, however, you fall off a cliff and are rushed to hospital with crushed bones and organs, you probably will not be at all picky about the staff in the ER who treat you. When you’re feeling better and starting to go into rehab, you might feel that your orthopedic surgeon makes you feel awful and that you aren’t treated very nicely in the clinic generally, but you don’t know any different. Maybe that’s how surgeons are. Maybe that’s how rehab clinics are. And who are you to complain? They saved your life.

Maybe you get a bit of a grim attitude. You do what they tell you to do with gritted teeth, even when it doesn’t help. Even when you’re sure the prescribed exercises are hurting you. You don’t want to make it easy for anyone to dismiss you as non-compliant and withdraw what little support you have. You’re in survival mode; you don’t have high expectations. (I’ve never been in survival mode with respect to dentistry.)

I’ve never been hospitalised for a psychiatric condition, but I spent years knocking on various medical/ therapeutic doors asking for help in saving my life. I tried to be dignified about it at first, and didn’t resort to desperation and begging until I was so ill I was unlikely to be able to keep myself alive longer than a few weeks more. That took years. I’m still bitter about the years I lost asking for help and not getting it, bitter that I was allowed to become that ill. Now that I finally have a psychiatrist (and a life!) I am very, very careful to be good and to preserve our relationship on her terms. I know how fragile my life is. I’m also very, very worried about what will happen to me when she retires and I have to start advocating for myself with a new psychiatrist. (I don’t think about what will happen if my dentist retires or moves. I guess I’ll find a new one.)

If you are a psychiatric patient, you may have impaired judgement which you may or may not be aware of.

If you are aware that your judgement is impaired, you may not trust your feelings. You feel dismissed? Don’t say anything: that could just be your misplaced sense of entitlement talking. You don’t feel heard? Never mind, you might not be making nearly as much sense as you think you are. You feel bad about the interaction? Of course, you’re a psych patient, you’re supposed to feel bad. If you felt good you wouldn’t be there in the first place. Shut up and drink the kool-aid.

If you aren’t aware of your impaired judgement, it’s hard to force yourself to act the way you’re supposed to. For instance, if you’re depressed and hopeless, then you don’t expect anything better — and you don’t recognise your own apathy. You don’t expect anything better because you genuinely believe that nothing better exists. At least if you recognise the signs of depression you can try to force yourself to seek something better even if you lack conviction, because you know from experience that the world doesn’t always look this bleak.

(When something in my mouth hurts to the point that I can’t eat any more, I look for a dentist who will help in concrete ways. I don’t spend a lot of energy trying to second-guess whether the pain is real or not.)

Having someone advocate for you can be a huge help. At least I think it can. The only time it happened to me, I had asked for an appointment at a clinic and had been put on a waiting list. My sister called them up to ask were they aware that I was suicidal and researching guns? I got an appointment right away, but with someone who was overloaded, not very available, and inexperienced with depression. (I’ve never had to be rushed to the top of a waiting list to see a dentist or dental technician who was inexperienced with plaque.)

I’ve advocated for others, and I’ve seen other people being advocated for. I’ve given my beloved permission to fire a psychologist (she wanted to talk to a forty-year old man about his relationship with his long-dead father when his immediate issues were the concrete problems of a new immigrant with a new spouse and no job). I was able to give this permission because I know from experience that psychologists can be (through ignorance and idealism) both unhelpful and destructive, and I know from experience that when you need a psychotherapist it’s almost impossible to fire the one you have without permission. (If I saw a dentist who wasn’t interested in my mouth but only wanted to talk about how unflattering my hairstyle was, I would have no compunction about firing them at all, no permission required. I’d be worried about their sanity, not mine.)

Permission to fire a shrink is hard to come by. MWAK, if you meet someone who you think you could use that permission — feel free to give it.

*** *** ***
RE side effects: the side effects of medication don’t worry me at all. If I don’t like the meds, I’ll just stop taking them. Adverse effects don’t worry me either. They’re permanent, but so is suicide — which is the risk if I don’t take the meds.

But talk therapy really spooks me. I have no defenses against it. I can’t tell when it’s hurting me. I don’t know how to advocate for myself.

I’ve seen lots of discussions of the risks associated with medication and the meaning of informed consent with respect to medical intervention. But in my own tiny little life, n=1, talk therapy has been a much riskier enterprise than meds. I’ve never seen a discussion of how a mentally ill person can protect themselves from an idealistic but misguided talk therapist. I’d love to.

Gerbil said...

In my opinion there are three reasons why the bad and the ugly get more attention than does the good.

First, mental illness and its treatment are still so highly stigmatized in our society that if something goes even minorly awry, some people are bound to make a big fuss the Evil, Evil Monster that is Psychiatry. (cough cough, Tom Cruise)

Second, many people (providers and consumers alike) either don't understand or choose not to remember that no treatment, no matter how wonderful, has a success rate of 100%. Not every drug works for everyone; and for some people, no drugs work. We want so badly to be cured, or to cure, that we forget that we might just be on the "losing" side every once in a while.

Third, we humans are embarrassingly susceptible to the availability heuristic. The news doesn't report on the millions of flights that arrive safely every year, just on the ones that don't... which makes it really easy to become afraid to fly. Likewise, the news doesn't report on the millions of people whose lives are improved with medication. Except for the occasional heart-warming human interest story, the news only reports on the people whose lives have been adversely affected.

I also wonder why it is that there is more furor over the side effects and adverse reactions of psych meds than there is over non-psych meds. I'd be willing to bet that more people take ibuprofen than all psych meds combined; so why didn't the new ibuprofen warnings get a media blitz?

NeoNurseChic said...

I also wonder why it is that there is more furor over the side effects and adverse reactions of psych meds than there is over non-psych meds. I'd be willing to bet that more people take ibuprofen than all psych meds combined; so why didn't the new ibuprofen warnings get a media blitz?

Because even with all the strides we've made against stigma, people still feel like psych meds are probably not necessary for most people who take them - in particular for illnesses like depression - which people assume is something that those with depression should just "get through" because most people do get through sad times, which they mistake for depression - as if the only reason someone is depressed is because they need to snap out of their sad time that they've hung too long onto. Therefore, if something bad happens on an antidepressant, it gets a lot of press and people are constantly warned by everyone around them that they shouldn't be taking it.... Nobody would warn someone not to take a blood pressure med, would they? But they would about an antidepressant...because they feel that the person can do without it - that it isn't worth the risk.

Not everybody is like that. But I think that plays a part in it....

More to say, but not tonight - too tired from my 2nd 12 out of 3...one more to go!

Take care,
Carrie

Midwife with a Knife said...

carrie: I do wonder what we can do to help with the stigma. I think that part of the problem is that most people who have never been depressed or seen someone really depressed don't understand what it is. Of course, most people know someone who's been depressed or suffered from another mental illness (I use depression because it is so common), they just don't know that they know them. And of course, it is tempting to tell people that they should be honest with their family and friends about their mental illness(I think there is some sort of PR campaign to this effect), but that's really difficult or impossible or needlessly unpleasant for many people.

I don't know how to beat stigma. It is a huge problem, though.

Sandra said...

Off-topic but on-topic for the subjec of kids and video games. Click for chuckle. http://cad-comic.com/comics/20060526.jpg

Parked said...

I have a good friend who is an ENT Dr. He told me onc about a singer who came to him for help with a hoarse voice. He was taken by her beauty and personality until he saw that one of her meds was Lexapro. He said it changed his whole attitude towards her. He saw her as flawed.
And the stigma goes on.

jcat said...

Dinah...very easy decision. Now if I could just get to the bit where the meds work for me, it would be justified.

I have lost count of how many meds I've guinea-pigged in the last two years. No point in counting because none of them do anything.

I have to stand up for trusting my p-doc, for learning about meds, for meds working more often than not. If I stop holding on to those thoughts then there is nothing.

I have a gun. Although I gave up my 5g's of TCAs, I still have a couple of months of sleeping tabs. I have my car, and the lengths of pool hose for the exhaust. And yippee, now I have a motorbike too, bought primarily for the dream of taking it straight into a concrete bridge at high speed.....

Parked said...

Dinah-What is is. Everyone has a lot to deal with in this life. I stay connected with the beauty of it all.....At MDAnderson's Leukemia Floor in Houston, you are confronted, visually, with end stage life. The bald, weakened, IV pole carrying patient's fighting the good fight to their inevitable death are some of the most beautiful people I have been honored to see.

Midwife---your question was not insensitive at all. Psychiatrist's differ from other MD's mainly because of the power of transference/counter transference. We all know that we have to disrobe for MD's for certain check ups. Disrobing the mind is the ultimate vulnerability of one's self.

DrivingMissMolly said...

Um, JCAT, I hope you have some phone numbers to call for help if you are that badly off. 1-800-SUICIDE helped me, also my employer's EAP. Think of things to live for. For me, my sweet loving bichon frise (dog) Bijou is something fluffy, sweet and adoring to live for. Who would be her servant of I were gone?

Good luck. Sometimes you have to white knuckle it!

Alison--what a great comment you made. It was awesome and I can totally relate.

Another thing I thought of is that psychiatry is the only specialty where they can withold your medical records if allowing you access could be "harmful" to you.

Info can be kept from the patient and that sets the stage for mistrust and miscommunication, although I understand it is necessary at times.

Really, when it comes down to it, it isn't the drugs per se, but the COMMUNICATION or lack thereof between you and someone who *should* be your ally in mental health.

Lily

Dinah said...

JCAT,
Please tell your doc/docs about your stockpile and guns. I am at a loss as to what to do about suicidal blog readers, but you be sure that it makes us uncomfortable. Hope remains a good thing.

Parked,
Thank you for that, I found your description quite moving.

jcat said...

I'm sorry, no intent to make you uncomfortable.

And I'm 3000 miles away, with good p-doc and t-doc, loving family and all the rest.

Hey, and two loving dogs and four tolerant cats. And a bunch of transient birds, some of whom are loving too.

Just trying to expand on why I advocate so strongly for understanding meds and the effects personally, and also why to me, and maybe to others like me, the side effects are so much less important than the alternatives.

I'm sorry, maybe this is too much info.

Anonymous said...

MWAK, I think the relationship with a psychiatrist is very different than the one with a GP. The relationship with a psychiatrist is much more intimate. I've changed GP's without a thought. Yet, I stayed with a psychiatrist who was abusive. I can't really answer why except to say that maybe I didn't think too highly of myself at that time, and I trusted him. I even refused to testify against him when he went before the state board. He took my money and caused harm, yet I still defended him. Doesn't make a lot of sense, I know. As time has passed, I wish I had agreed to testify against him. I hate knowing that he is still out there hurting other people.

Anonymous said...

There may be a side effect of lithium that is never mentioned on package inserts--you may need to clean your toilet more often than before.

Given the many other issues confronting someone who has bipolar, this is not likely to get mentioned to one's prescribing psychiatrist.

Heh heh, maybe Tom Cruise can use this to support his arguments that psychotrophics are evil...

I learned about it from a fellow who takes it. He was assisting me at a hardware store and had advised me to get a pumice stick for cleaning stubborn stains on toilet porcelain.

X told me that after he began using it, he had to clean his toilet a lot more often than before, because the lithium he excreted in his urine
generated tenacious grey mineral
deposits around the water line.

It would be interesting to know if this happens in all locales or if the local water supply has to have a particular PH and mineral content for excreted lithium to have this sort of effect.