Six months seems to be the magic number for when the depression really kicks in, full force for patients on Interferon/Ribavirin therapy. For me, 6 months was at the end of December. I don't know whether the warnings I had heard from nearly everybody I know who has been on therapy maybe planted some seed in my brain and I was victim to the power of suggestion, or if in fact their warnings were accurate and prescient and this is just extremely common. Whatever the case may be, and I'm tending to think that mine is indeed the latter scenario, Interferon from month six on can really play a number on your head.
Psychiatric side effects are the most troublesome SE's for this drug. The patient warnings aren't just a sheet of paper; it's a booklet that you get every time a box of 4 syringes pre-filled with Interferon comes in the mail from my pharmacy. I can tell by reading it that is has been frequently revised, most likely at the behest of the FDA, as new and/or maybe more troublesome problems have been reported. Since I have a health care education and background, as I read through the booklet, and I occasionally do review it since I seem to get at least one new surprise a month (usually more), I always think to myself "this booklet is the perfect example, the pinnacle if you will of a pharmaceutical manufacturer playing Cover Your Ass".
Before you think that I'm concocting a conspiracy or taking potshots at the drug companies here, I'm really not. When I do jump on the bully pulpit, and I am certain that at some point that it will happen, trust me, you will know it. Years working in health care, as well as navigating the system on a continual basis because I live with a chronic disease requiring lifelong management, has left me with a veritable arsenal of horror stories about the drug companies, and how there is barely a hint of altruism in their corporate structure. It's different once you start talking about individual researchers; I know a few, so I know of what I speak. Most of them really went into their profession wanting to save lives, alleviate suffering and cure and prevent horrible diseases. Once in the "real world", however, they often find that they are assigned to projects that are of a questionably real value for the human race, like coming up with the next great boner drug for octogenarians (who for the most part have no business fucking unless they can get their dick up on their own) is generally not how they dreamed of their life as a medical researcher turning out. It's a living that allows them to pursue their real dreams, of curing real life-threatening diseases. They're kind of like the actors like Nicholas Cage, who will do the big-money blockbusters that they know are total crap, but they also know that the salary will be ridiculously generous. That is what allows them to produce, finance and act in low-budget independent films, most of which never make it out of the art house theaters in larger cities, and often don't even break even financially. One can argue that both cases involve selling one's soul to some degree in order to try to save it on the other end by bringing a creation to the world that is of some genuine import.
But once you get to the corporate level, to The Man, these very virtuous and admirable researchers more often than not get hamstrung, their hands tied, or their pet program gets starved of money. There is a lot more money to be made in helping old men get hardons and give depressed people pretend happy lives then there is in treating what is know as an orphan disease: ones with a relatively low incidence in ratio to the population at large, and/or ones that primarily affect minority populations, or ones that could prevent millions of unnecessary deaths in undeveloped or developing nations. In big business, no matter what line of crap the multinational corporations are feeding you, one of the dirty little secrets is that it's still ok to kill the poor and non-white, as long as you do it quietly and inobtrusively. Translated to non-circular speaking, that means to do it with neglect.
But as much as I would like to go off onto this tangent even more, that isn't my point. My point is, at first appearance I thought "classic CYA". Now that I've lived through taking it, I have to say this: I never seen as many adverse events reported for any drug that is still on the market as I have with Interferon. Even more telling, I've never actually had as many of them happen to me personally as I have ever had with other drug I've been prescribed, even Thalidomide, and that is some nasty stuff. Seriously, every time some weird new thing happens with my body, something that never happened pre-Interferon (or if it did, with not nearly the ferocity), I'll immediately assume it's the Interferon - my version of guilty til proven innocent. Then I'll go look up the reported SEs/ARs, and darned if it's not in there. Or conversely, I'll be bored and decide to look up Interferon and Hep C data, look down that previously-mentioned long list of SEs/ARs, only to find that I've probably had almost half of them by now.
Now I'm sure that the FDA forced Roche (the manufacturers of Interferon) to make a big scary pamphlet and document every minute little adverse event, but I also know that Roche has a big stable of lawyers back at headquarters in Nutley, NJ, and those guys' primary goal in life is to keep Roche's ass covered, out of the courtroom and also below the FDA's radar as much as possible. [useless trivia - Nutley, NJ is also the hometown of one Ms. Martha Stewart. Yeah, that one.] But all of my conspiracy theories aside, I'm very thankful that they made this drug look as toxic and scary as it is. I'm having a very good course; the majority of people have a much worse time, and considering its statistically less than stellar success rate, those people have some cajones to put themselves through it. Just off the top of my head, here are some of my memorable AR's thus far: hair loss, itching, weakened fingernails and toenails, nausea, vomiting, fever, headache, mouth sores, lethargy, poor appetite, weight loss, anemia, neutropenia (low white blood cell count), anemia, decreased CD4 (T cell) counts, compromised immunity, infections (which can be life-threatening; so far so good there. Only garden-variety), visual changes, retinal edema (swelling of the small blood vessels that supply oxygen to the optic nerve much of the rest of the internal structure of the eye), increased frequency and worsened outbreaks of psoriasis and eczema, excessive bruising, skin infections, irritability, depression and anxiety. Let me repeat this: these are just what I can inventory off the top of my head - there are surely many more that I could find if I went to the literature.
I'm going somewhere with all this, and that's to have a little discussion about the psychiatric SEs/ARs, because right now, even in spite of all of the other annoyances it's placing on my life, these have been the most vexing, crippling and frustrating. From pretty early on - I would have to guess within a couple of months from the time I started in late June, the irritability was there. I'm not talking about the grumpy old man type or the got up on the wrong side of the bed type, it made me a complete and utter ass to be around a lot of the time. When I figured out what was going on, I started to preemptively warn the people close to me that it wasn't taking much if anything to set me off, and so if my reactions seemed to be out of proportion to the situation, or equally as commonly, they seem to come out of the blue, it's the Interferon talking. I've done my best to bite my tongue, think before I speak, take the 10 deep breaths, all the usual ones, but more often than not, the little monster will find a way to speak for me. I have to admit, that has gotten a bit better, but I'll also say that what is most helpful is just to be left alone when I'm in that place. This is another benefit that has come from living alone - I couldn't imagine dishing that crap out to a partner or even a roommate day in and day out. I'm sure that many couples have made it through this, but I would also wager that many relationships haven't survived this. As much as you reassure your partner that this isn't you, it's the drugs, eventually they will come to the conclusion that part of it probably is you; just you without a filter.
Over the years, we've all heard people say "It's the booze talking" or "It's the drugs talking", but in the past, I've almost always felt that is a cop-out. Alcohol doesn't make you lie, to the contrary, it's what I've always called "The Lie Filter" - it sifts out the lies and good manners and serves up truth: fresh, piping hot, and without any sugar coating. As for other drugs, if they make you stupid, antisocial, inappropriate, paranoid or violent, then you shouldn't be using them as the fall guy for your bad behavior. For that matter, if this is what they do to you, you probably shouldn't be doing them at all.
With Interferon, it's a different story. Anger comes out when there isn't any perceptible trigger, and it's often misdirected. The idiosyncrasies of those close to you, especially a partner, quirks which you've either always thought were cute, or at the worst, not that important, become monumental. I have an acquaintance who just recently finished his course. He had a good response, so fingers crossed that it will stay that way, but more to my point, he is a very sweet guy. I've rarely heard an unkind word come out of his mouth, ever. If he is in the company of someone he finds offensive, he's always polite, and you really have to know him well to be able to tell that he doesn't like that person. He'll still smile and nod his head to whatever stupid thing they are telling him, but the smile is just slightly different. Those that know him know it is one of both pity and disgust.
Toward the end of his course, a mutual friend described a conversation he had with this guy where all he could do was recite a litany of grievances about his partner. Not just one, the list went on and on and on, and as my friend (who is a health care professional) was listening to this, he told me the first thing that came to his mind was "this is the Interferon talking". Hearing that made me laugh so hard. He had no idea that I had been using exactly the same phrase to describe my moodiness for months. When I told him that, and also told him the way that it affected my moods, he was really empathetic. It was nice to have my "I'm not crazy, this is the drugs" belief validated from outside myself, as well as having someone I don't have to explain myself to every time I turn into Mr. Hyde.
Going way back, to when I was just entertaining the notion of starting the treatment, I have had numerous current patients and Interferon veterans tell me about the 6 month mark. Honestly, I've heard it so much I couldn't even venture to guess how many people described this to me. It seemed to be as common as the terrible twos, the seven year itch, the mid-life crisis and day-of wedding jitters. Me being a skeptic anytime I hear a gross generalization, decided I would take the warnings with more than a grain of salt but far less than the certainty of the law of gravity; in other words, I was consciously trying to not let the power of suggestion set me up to psych myself into a somewhat serious but situational bout of drug-induced insanity. I'll be danged if what had to be no more than a couple of weeks after my 6 month juncture (which, coincidentally is also pretty close to the midpoint in my treatment plan), the sky started falling.
The way that this came on was so insidious that it took me a bit to figure out what was going on. It was just after the holidays; it could have been holiday blues, I had just broken up with Brian a month earlier; there were a number of excuses that I tried to put to this. Then, the apathy, ennui and a pretty complete demolition of what scraps of motivation, energy and joie de vivre that I had left from the last year was gone, seemingly in an instant.
Note: for around 6-9 months prior to the Hep C diagnosis, I had pretty much constantly felt like crap. Both my physicians and I were stumped. My PCP (primary care physician), who by the way is phenomenal, didn't think to test for Hep C, since I had tested negative less than a year prior. I didn't fit into any of the most common risk catagories (IV drug use, needle stick, transfusion or organ transplant prior to 1982) - sexual transmission in the absence of all typical routes of transmission (blood to blood exposure), is extremely rare. I'm not saying that I'm a poster child for Murphy's Law, but at least medically, if something completely out of the ordinary, extremely rare, unlikely to happen, or difficult to diagnose or treat is out there, it usually finds me. If you watch the TV show House, I'm a non-fiction version of one of his patient cases. Finally, out of futility and after my doctor threw her hands up yet once more, she decided to go ahead and test me for Hep C. I had just gotten over Hep A less than a year before, and I'm vaccinated against Hep B, but there had to be some reason why my liver function tests never got back down into the normal range after recovering from the Hep A. She ran the test (I think this is in April 2009), and darned if I don't have Hep C.
But back to the sky falling: like I said, it was pretty insidious, not at all like a house of cards falling, more like a tire with a slow leak. After the apathy, came the pretty complete crushing of my self-esteem, followed by bouts of sadness with occasional crying, though the crying was usually completely out of context to the situation. Then finally, the gray clouds went black. Perhaps from the outside what was happening seemed pretty obvious, but from the inside, nothing was obvious. Changes that weren't insidious or subject to a healthy dose of denial were masked by my apathy.
I started to not really care if I left the house. Then, I wasn't showering every day. I also was socially isolating myself, both by not returning calls or emails, and also by not keeping in touch with my small close circle like I already had. One of the biggest problem with the social isolation in this situation is that you take away the perspective that others would be seeing, and seeing the situation only through your eyes. Then the irritability and crabbiness came back with a vengeance. Finally, (wait let me change that) FINALLY, it clicks in. The proverbial light is switched on, and I finally realized what was happening.
Now before any of you think that I let this get to a dangerous point, that my life lost all meaning or I became a danger to myself, not even close. I never harbored suicidal thoughts and I didn't have the desire to numb the pain with booze and pills. Those who know me pretty well know what a control freak I am, so I really have to be climbing the walls or in severe pain before I'll medicate myself. I just don't like feeling out of control. Sometimes I won't even take a non-narcotic pain reliever; I really am that stubborn. More than anything, it was just that nothing really seemed to matter to me. What got me out of bed every day was knowing that the dogs and the cat depended on me to feed them, get them out to go to the bathroom (at least the dogs) and at least give them some half-assed attention. Once I was up, I could usually stay up for at least a few hours, but had I not had the commitment of caring for creatures that relied on me for their health, well-being and safety, there are probably a bunch of days that I would not have ever gotten out of the bed.
But at the time that it got the worst, I was at the point now where I knew what was going on, and knowing you need to change or get help is a very important first half of the battle. I have to say here, with a tinge of humility: I was more than a little disappointed that I couldn't prove every other current and former patient of Interferon therapy that warned me about the psychiatric issues that this doesn't happen to everybody. Of all the SEs/AEs that inhabit that list on the pamphlet, a list so long it would rival the Bayeax Tapestry in length, I would put money down on depression being one of the top 3, if not THE most common SE/AE associated with Interferon. It's horrid and paralyzing, far worse than losing hair, having a mouth full of painful sores, anemia, nausea, vomiting or lethargy. All I can say is, thank God for Welbutrin. Had I not been on an antidepressant from the get-go, I don't want to even imagine what this would have been like.
Which now takes me back to where I started with the beginning of this latest post: I really have to wholeheartedly thank my psychiatrist and therapist both for listening to me when I said that I wanted to try to manage this on my own, like I have with any difficulty I've faced in the past. I refused to take antivirals for HIV for many more years than my physician was comfortable with (a decision that turned out to be a very good one), but as with my challenges here and now and in other situations in my past, I've proven that I do know when I'm over my head. I still believed that despite this spell that I was in the full throes of, I remained mentally clear enough to know when to ask for help. Both Rex (shrink) and Jason (therapist) were skeptical, with what I now have to admit may have been good reason. As I proofread this, and in the process get a rear view mirror view, it sure sounds a whole lot more hellish than it felt like it was at the time. But it taught me something very important, something I couldn't have learned with an emotionally-numbed psyche: more than anything, what the experience gave me was the confidence that I could deal with this and with other difficult challenges that life can and may throw at me. However, I have to give some credit where it is due here: I learned a lot that prepared me for this in the course of many years of trying to manage Ken's depression with him. Yes, it's different to be on the other side of the mirror, but even though the perspective is different, depression is depression is depression. I was and still am certain that I could realize when the shit was going to hit the proverbial fan well before something really awful happened, and more importantly, I was not too proud to do something about it, even (God forbid) ask for help. I may be stubborn, willful and fiercely independent, but I'm also pretty attached to this thing called living, and I'm not in any hurry to do the big final check-out from Hotel Earth.
For the last 3 months, Rex has been trying to convince me to go onto a 2nd anti-depressant, at least temporarily, until the course of treatment is finished in July, and I'm still fighting with all my might to stave this off. My rationale here is that sadness and pain are normal emotions that are part of being a fully evolved human being. I don't want to numb away all the emotions I don't like, because they hurt are inconvenient. I want to live fully, and be fully present. I've taken drugs that have severely narrowed my emotional range, but only when Ken died, and at that point, I didn't need a big range of emotions. What I needed was a chance to heal my mind and heart, and that would have either been impossible or severely delayed had there not been aggressive psychopharmacological intervention. But I'm not where I'm at three years ago. Yes, reading this back to myself does show me that this has been a little worse than even I was realizing. But more importantly, I'm also learning that I can work my way through these things in a less-medicated manner, a manner that lets me feel more control in regard to my mental health and my life in general. I wouldn't trade that part of this experience for anything.
But would I ever do this solely for the purpose of personal growth? Not on your life. As valuable is this experience has been, I don't think my life would have been a whole lot worse had this never happened. In the end, however, it's purely conjecture and a rhetorical and academic argument. It happened, and the bell can't be unrung. Learning through adversity can be a good and lasting lesson, but it's also one that you shouldn't be going out there and seeking. If it's the hand you're dealt, you have to play it somehow, but gamble with knowledge, forethought, more than just a single perspective, and perhaps most importantly, a Plan B. As I love to say to someone who tells me they see no way out of a situation: there is always a Plan B; and a C, D, E, F and G. Some roadblocks are small enough that you can look through them, but more often than not, you have to be creative and look around, under or over them. Don't limit your options just for the sake of expediency, painlessness or ease.
And now, to quote the late great (and completely unique) Bob Ross, I'm going to go paint some happy little trees.
Doggydad's Life Now: The Viral Monologues by Parry Tallmadge is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at doggydad.blogspot.com.
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