I am a 57-year-old white American male infected with Hepatitis C. I am involved in a controlled medical research study by Roche Pharmaceuticals of an experimental Polymerase Inhibitor (RO5024048 also known as RG7128) drug therapy for the virus. This document is the story of my illness and the experience of treatment. My lovely and pretty damn wonderful wife will be contributing her take on the experience as well.
Monday, August 30, 2010
This sort of fatigue is one of the most widely reported effects of long-term treatment on interferon. The drug seems to eventually saturate your cells at some level and large numbers of patients report effects ranging from extra tiredness at the end of the day, to barely being able to get themselves out of bed without exhaustion.
Several recent examples in my own case come to mind as illustrations of this effect. A few weeks ago I took a week vacation from work. I did not travel anywhere as my wife was working during my time off. I caught up on my sleep, my reading and did one project around the house that had been on my mind for about 10 years. (This is the nature of home ownership, after you do you initial renovations – in our case very extensive – you tend to let the small items slide until you just can’t stand it anymore). Our house has lath and plaster walls that are cracked in several areas and I made it my project to fix cracks in the entryway and stairwell. The first day took about 7 hours of scraping, filling vacuuming and cleaning. I was tired the next day, but it didn’t seem bad. It took about 4 hours that day to finish up and after cleaning and replacing rugs, etc. I felt good about getting the job done, finally. The following day I slept till noon, woke up tired, lasted till about 2 p.m., slept till 5 p.m., was able to stay up and visit with my wife and then was in bed at 10 p.m. and slept till 10 a.m. I was exhausted from the two days of physical activity that had gone before.
A few days after that I went to the baseball game referenced in this post. It was a long game, in mid-week and I followed it up by working the next day. The day after that, I again slept till noon, did a bit of reading and went to bed early in the evening. The mere fact of dropping a 10-hour day (which was primarily recreation) into the middle of the work week flattened me.
The final example occurred last week when I work five straight days instead of my usual four. This didn’t seem like a big deal to me and indeed on off day of Friday, I did not feel terribly tired. Saturday I went to a reunion of a group of folks I have know for over 20 years who used to take long weekends together in the California gold country. It was a relaxing day of eating, talking and sitting around on the deck. The addition of these 5 or 6 hours of excitement and attention to the extra-long work week left me out on my feet the next day. I found myself dozing off reading the paper; riding in the car and just about any time I sat down to take a break from our not-very-strenuous walk.
In each of these cases, I had completely forgotten the previous bout of exhaustion by the time the next one came on. If I had enough energy to remember the fatigue or enough memory to remember the lack of energy, it would make planning my exertions go much smoother…
Friday, August 27, 2010
It goes beyond merely forgetting where your keys are or what the name of a movie you saw in the past is. It extends to trying to remember what you walked into the room to do, what it is you were trying to say a moment ago, what you were going to make absolutely sure you got done today or even what you sat down to write about. Perhaps the most troubling aspect of brain fog is that it can actually make you forget the fact you have brain fog, a classic lose-lose situation.
You forget that you have noticed very particular situations that you made note of in the past with an eye towards either avoiding in the future or not entering in to without a plan to make the situation go as smoothly as possible. You find yourself unable to concentrate even though you know you are in a situation that absolutely requires that you pay attention. You discover that you cannot think through and solve the type of problem that you have been able to handle in the past. It drives you to distraction and, unfortunately, you are already there.
This past week my wife and I went to the Roots of Impressionism exhibition at the DeYoung Museum in San Francisco. In the preparations to go to the show, it completely slipped my mind that since the beginning of my treatment crowd situations make me anxious and irritable. The show was only moderately crowded but shortly after entering the galleries, I realized two things: I was starting to get really jumpy and I had forgotten to bring along my Ativan which does a very good job of calming me down in those situations. By the time we finished our tour of the exhibition I was edgy enough that when some friends we had happened upon at the show suggested going to the café for a chat, I had to decline and head home to calm down.
As an aside, I think that the person who invented the audio tour for art exhibitions should be tarred and feathered. Bad enough in the normal sort of exhibition that you have to navigate around the clumps of people reading the labels and the explanatory posters, but at least their ebbs and flows are predictable. The people walking around with audio headsets on are a nightmare. They stop and start erratically. They make sudden turns and movements and they are completely unaware of the people around them. It is the same sort of behavior as automobile drivers on cell phones and just as much of a pain in the ass.
Returning to our previously scheduled disquisition…
Two days after the jaunt to the museum, a friend who had an extra ticket invited me to a Giants baseball game. I laid out a checklist for the game that included sunscreen and a long sleeve shirt to counteract the extra sensitivity to sunlight caused by interferon; several bottles of water, some fruit, and an extra T-shirt in case the fog came in and dropped the temperature 20 degrees. I forgot entirely that baseball games draw large crowds, especially on beautiful summer afternoons. The mere act of getting through the crowd to get to my, excellent, seat already had me twitching. I had once again forgotten to bring the Ativan that allows me to handle crowds more easily. The only thing that saved the day was that the people immediately on either side of our seats decided not to attend that day and there was enough extra personal space to let me relax. It was a great game, even though the Giants lost, but it could have been a really tough day.
You would think that the dodgy experience I had at the museum only 48 hours earlier would have left an indelible mark, but even that could not penetrate the fog…
Saturday, August 21, 2010
Since my viral breakthrough my numbers have run 40,000; 10,000; 5,000; 1500; 990 and now 310. In ten weeks I have achieved a log 2.2 reduction in my viral load. With any luck, my test this Wednesday will put me very close to undetectable.
Yes, it’s getting ahead of myself to think about hitting undetectable (under 47IU/ml by this test method) but optimism is what fuels successful treatment and I remain resolutely optimistic.
So there, the graph is going down, the interferon is hunting out and killing the remnants of the Hepatitis C viral horde that was infesting my body and now I am going to go take some drugs and watch a terrible Sci-Fi channel movie with my wife.
I hope your evening is as exciting as mine…
Thursday, August 19, 2010
Luckily, the brave new world of cable (or satellite or internet) television gives one an almost infinite set of choices of worthless time wasters to choose from. Celebrity Rehab: B, C, D and E list “celebrities” try to get off drugs and use the show to rebuild their careers at the same time; Holmes on Homes: Canadian contractor makes you feel that any work that was ever done on your home was probably both substandard and outright dangerous; Whale Wars: Sea Shepherd staff and volunteers demonstrate a belief that their self-righteous conviction to the cause of saving whales means they do not have to practice or prepare in anyway for their maneuvers until they are in the middle of the Antarctic Ocean (oh, and never bring any spare parts either); Comedy Central Presents: an endlessly supply of comedians you have never hear of doing the same 30 minute set on travel, life in the city, health and grooming habits, how their girlfriend-husband-wife-boyfriend are impossible and then the windup about the perils of sex; all these hits are available for your delectation.
The other day none sufficed until I flipped by John Stewart’s The Daily Show just as he was introducing his guest, Emma Thompson. The lovely Ms. Thompson is my favorite actress and the only woman intelligent, loony and sexy enough that I would leave my wife for her. She was delightful and indeed completely loony during the interview. She went on about the narcissism of Mary Poppins (she was promoting her new Nanny McPhee movie), the practice of raising British children in boxes and never letting them outside when the sun was shining and how she did her scriptwriting longhand and indeed only wrote one letter per page so that her finished scripts were huge stacks of paper. Okay, you had to watching – but I was and it was fabulous.
Later that evening I was describing this to my wife and, for the umpteenth time mentioning that Emma was the only women I would leave her for while adding that there was no danger the attraction would be mutual (did I mention certain saint-like characteristics of my wife), To which my wife replied why not? Why wouldn’t Emma Thompson find me attractive? Flattering I said, but I’m older than Emma, have bad teeth and thinning gray hair and am not a wealthy guy and movie stars generally go for the good looking fit younger sorts, especially if those sorts don’t have money (the trophy wife, boy toy thing). So she suggested that I play the anti-boy toy card. That I be the intelligent, amusing, somewhat eccentric older guy; that indeed, I be the trophy older guy.
That’s when it hit me. I could start a career as Emma Thompson’s trophy geezer, her partner in inspired, insane lunacy. She would have to pick up all the bills of course as whatever talents I posses have never led to money, but she can afford it. And to think, I have my wife to thank for this brilliant idea. My trophy geezer facebook page and twitter accounts should be going up soon as well as the trophygeezer.com website where you can sign up for courses on becoming a trophy geezer and share you experiences on the various trophy geezer forums. And I owe it all to Hepatitis C…
Disclaimer: The events, ideas and descriptions described in the above post may have occurred due to the interactions among the panoply of drugs I am currently taking in my treatment…
Monday, August 16, 2010
Having more hemoglobin to carry oxygen around your body can mean a lot less shortness of breath after exertion. It can help your muscles recover faster and mean you can do more before you get that tired, wobbly-legged feeling. It also means that you feel a bit less fatigued overall and perhaps means that you don’t need quite as much nap time during the day to keep you functioning.
With higher white blood cell counts, you are less likely to suffer from minor infections and more able to fight off any illnesses, like cold and flu, that might be going around.
My own experience has been an example. Since beginning to administer Procrit my hemoglobin level is up to 11.4. This is higher than at any time since I began the drug study 33 weeks ago. I have definitely noticed that I am not as fatigued at the end of the day and that I can do more physical work without gasping and breathlessness. The down side is that I am not as exhausted a night which means falling asleep is even harder than normal leading to a bit more insomnia. No good result goes unpunished, I guess.
My neutrophil counts are consistently holding at around 800 since I started on the Neupogen. While I haven’t noticed a direct effect on my energy or mental state, I haven’t gotten sick since then either and I’ll take that result any time.
I am not noticing that either better hemoglobin or white cell counts have increased my ability to concentrate or improved my memory however. You might imagine that a bit more oxygen to the brain would be helping those sorts of things, but in my case you would apparently be wrong.
The other area the extra hemoglobin does help though is in the late-night laps around the house. I can walk a half-mile back and forth easily now before going back to bed and finally falling asleep…
Tuesday, August 10, 2010
Those of us participating in a study or standard treatment tend to be very concerned with how the treatment is making us feel. The doctors tend to be very concerned with how the treatment is affecting our body’s ability to function. These concerns definitely overlap, but the primary focus is very different between patient and doctor.
When the patient first examines the information about experimental drug trials or the standard of care treatment, they tend to focus on the potential side effects of the medications and especially the side effects that manifest themselves as physical reactions: nausea, vomiting, diarrhea, fatigue, muscle pain, dizziness, headache, rash, irritability, hair loss, sore throat, depression, confusion, itching, etc. The patient also generally makes a note of the potential long-term side effects like changes in thyroid function that may be permanent and the possibility of macular degeneration. A lot of the patient’s focus is definitely on the comfort related side effects.
The doctors are aware of all these as well, but primarily as an issue of whether the patient will be able to continue through to the completion of the treatment. Will some of these become so serious that the patient will have to discontinue either the study, if they are in one, or the standard of care treatment? Can they be managed successfully to keep the patient on course?
The set of side effects of primary concern to the doctors are the ones that directly affect the body’s systems: Anemia (low red blood cell counts), Neutropenia (low white blood cell counts), thyroid function changes, depression and insomnia. Anemia can put stress on the heart and circulatory systems and contribute to fatigue; Neutropenia affects the body’s ability to fight off infection successfully; changes in thyroid function can lead to a host of metabolic problems; depression and insomnia can both lower the body’s ability to fight off disease and function successfully. For the patient in a research study, the side effects just mentioned can lead to the doses of their meds being reduced or suspended to the point that the treatment loses its effectiveness. That is unfortunately what happened to me. For the patient under standard of care treatment the doctor may be forced to prescribe additional drugs to counteract those effects in order to keep them on the course of treatment.
It was interesting to realize, after the fact, that the long list of side effects I was originally concerned about, were not the ones most important to my successful treatment. The nausea, chills, headaches, dizziness, irritability, rash, back pain and the rest were not, in the long run, the side effects that negatively effected my treatment. The tremendous reduction in my white and red blood cell counts were what required the reduction in my medication doses that eventually caused the viral breakthrough.
There wasn’t really anything I could have done about it given the requirements of the research study, but it is interesting to note, that I was looking the other way, so to speak, while the virus slipped back in…
Monday, August 9, 2010
You also need to plan how you will ensure that you maintain your drug-dosing schedule. Depending on how long your trip will be and the number of drugs you are currently taking, you need to make sure you have the necessary amounts of drugs and the equipment to store them properly. If I am going to be gone for more than one week, I need to bring along (and have the proper coolers or refrigeration for) 2 doses of pegasys, 2 doses of neupogen and 2 doses of procrit. That is 6 syringes and enough cold packs to keep it cool for the necessary time frame as well as the appropriate number of ribavirin, celexa, folic acid and levothyroxine pills. And of course, the necessary sleep aids and painkillers should something flare up; do you really want to have insomnia in a tent, after all?
This is perhaps an over elaborate lead-in to our two day “camping” trip this past weekend. My wife and I met a number of old friends at a location called the “Coastanoan” on the San Mateo County coast south and west of San Francisco. It is a “low-impact” lodge development that has a couple of lodge buildings, a small number of wooden cabins and about 80 tent-cabins. A tent cabin, in this case, is a 10 by 12 foot (3 by 4 meter) wood-frame structure covered with waterproof, reinforced tent material. It has a bed, an electrical outlet, windows and a door. The facilities are in centrally located areas scattered throughout the campground and are the only heated buildings outside of the lodge structures. So, you have an unheated, semi-permanent tent like structure that you sleep in and you walk to the bathrooms and showers. They have outdoor fireplaces near the bath facilities and the usual barbeque and picnic areas. It is a short walk (crossing the highway carefully) to the beach.
I am describing all this so you realize that while it is called a campground you are not lying in a small tent, huddled in a sleeping bag with only a thin pad between your tender bottom and the cold ground. Oh no, you are on a futon in a full-sized bed with a HEATED mattress pad to keep you toasty through the chilly night. We were not exactly roughing it, but all those caveats I mentioned earlier apply.
I had to make sure I had injected 36 hours previous to leaving to make sure the majority of the interferon symptoms would be past. I had to bring all my other drugs and make sure I took them on schedule, not always easily when you are running around with old friends and their children. I also had to develop a plan of action to deal with the 3 to 4 trips to the bathroom I would be taking each night, and walking through the cold, foggy, damp night to the bathroom was not the plan I had in mind.
It all went remarkably well and served as a dress rehearsal for our 6 day trip next month to the higher and colder area around Yosemite. It all seems doable, but it requires extra planning and lots of extra blankets because the last thing you want is to catch a chill with a low white blood count.
I wonder if bears will break into cars to get Hep C meds…
Tuesday, August 3, 2010
Unfortunately, I occasionally wake up and can’t fall back asleep necessitating another set of laps until I am tired enough to sleep through the night. Aside from toning up the calves nicely, these late-night peregrinations also allow one to review all the plans one once had for the house. That floor you were going to refinish; the cracks in the plaster that need patching, the new chandelier you were going to install in the dining room about ten years ago. There is nothing like the middle of the night to come face to face with all the grand, and unfulfilled, plans one had for your castle. It’s a good thing the lights are out or the number of flaws and not quite finished details would be overwhelming.
But then I climb the, squeaky, set of stairs to the second floor, climb into bed next to my (gently, gently) snoring sweetie, put my arm around her and think that the new paint on the stairway can wait awhile, it’s perfectly comfortable as it is.
Sunday, August 1, 2010
This reminded me a great deal of the physical situation I encountered when I started on Paxil and, to a lesser extend, after I switched to Celexa. It seem unusual that this should be happening several weeks after beginning antidepressants, so I began examining my recent use of meds to determine what might be happening. I believe it was related to the pain medication tramadol.
The past few weeks I have had a bout of fairly serious lower back pain. I have been dealing with this sort of pain for about 20 years as the result of a serious bicycle accident (over the handlebars, on the pavement, laid up for a month sort of thing). It is something I have managed by stretching, core exercises and, occasionally muscle relaxants. It flared up about 10 days ago with pain across the lower back, around the sides of the pelvis and even with some sciatic pain radiating down my right leg. It made it impossible to sleep and even tough to work while sitting up. I immediately started in with my stretching routine and exercises but until they began to take effect I was taking tramadol at least twice a day and on a few occasions 3 times a day.
I remember when I got my prescription for Celexa; the pharmacist took me aside and told me that he noticed I was also taking tramadol. He stated that while tramadol is not a serotin uptake inhibitor specifically, it has a similar chemical construction to Celexa and I should be careful not to take too much of it while taking the Celexa as it could lead to an oversupply of serotonin in the brain which causes serotonin syndrome.
Symptoms may include:
· Loss of coordination
· Fast heartbeat
· Rapid changes in blood pressure
· Increased body temperature
· Overactive reflexes
As soon as I remembered this conversation, I immediately stopped taking tramadol and instead used ibuprofen for any pain. I still took my dose of Celexa but I noticed that it did not get any worse on Friday and by Saturday it had begun to moderate somewhat. After a jumpy night Saturday, Sunday has been okay with a gradual reduction in nerves, chills, sweats, etc. I think it is well on the way to returning to normal over the next few days.
I am definitely going to paying closer attention to my use of tramadol and will be talking to my hepatologist about potentially switching to another pain med for the times I need it. At least I recognized the symptoms as being similar to the range that occurred at the start of the antidepressants and could make the connection with the serotonin.
On the positive side, though I would not recommend it to anyone, I lost four pounds in four days due to the amplified nervous activity from the serotonin. But do not try this at home. It is much better to be fat and happy than slightly less fat and jittery as hell.