The Day My Energy Returned

For the first several months after completing the ribavirin and interferon standard therapy I still had a  very low energy level. It wasn't exactly exhaustion but it was a situation wherein if I did anything more than normal exertion it would wear me out and I would need to take a nap or at least sit down and rest. On a normal workday, I would work seven or eight hours go home and not be able to do anything in the evening unless I took a nap after work. If it were a particularly hard day at work I wouldn't really have the energy to do anything whether or not I rested after I got home. This gradually improved as the months went by but there was no breakthrough, there was no point when I felt that my energy level had returned to normal. It was just a holding pattern with very gradual improvement.

This continued until about mid-March of this year. At that point, almost 9 months to the day when I had finished treatment, it felt as though a switch was thrown and suddenly I had my energy back. I could move faster, I had a bit more strength, but more importantly I was not exhausted by doing basic physical activities. I'm not sure why this occurred when it did. Other people who have been through treatment have told me that you have to completely ignore the time frames that the medical professionals give you for recovering from treatment. Most of the literature indicates one to 3 months, some say 3 to 6 months. People who have gone through treatment that I have talked to state almost unanimously that you will not get back to normal until the same number of months have passed from the end of treatment that you spent in treatment itself. I was in treatment for 18 months and the amount of time passing before I began to feel a genuine return of energy or and w approximation of the way I felt before treatment began was nine months, so perhaps there is a correlation where one month of recovery for every two months of treatment will eventually return you to at least a semblance of your previous state. Whatever the case, I don't have a specific reason related to the treatment that would indicate to me why suddenly I began to feel better.

I still have a long way to go. I feel tired after levels of exertion that would not have tired me nearly as much before the treatment began. I also still feel some cognitive and memory deficits that I truly hope will go away as more time passes from the end of treatment. I still hold out the faint hope that my thyroid gland may eventually recover some of its function. At this point, being able to do what I can now is a wonderful thing.

I suspect the change may have had something to do with the time of year if nothing else. I began to feel better around the beginning of spring and two things happen around that time. Daylight savings time starts, and the weather begins to dry out and get warmer. The combination of the sun not setting a 5:30 p.m. and better weather no doubt did a great deal to energize my body and my mind. I don't think it's a complete explanation, but it must have had an effect. Another thing that happens at that time of year is that spring training for the baseball season is coming to a climax and the start of the  regular season is just a few weeks away. I have loved baseball since I was a boy and I'm sure that the excitement of the upcoming season must have given me some energy as well. My fantasy baseball draft was only a few weeks away and that always sharpens the concentration and brings on the energy.

So who knows. perhaps it was not some set period of months after the end of treatment that triggered the renewal of my energy but instead was simply a combination of longer days warmer days and the start of baseball season. Whatever reason or combination of reasons it was I'll take it. I was so tired of being tired, so tired of being somewhat depressed and so tired of having my muscles feel sore and weak that whatever the reason it's good enough for me.

Six Months Later…Viral Breakthrough

I recently had six month after treatment blood test to determine if I achieved a sustained viral response or SVR. The results came back today and the Hep C virus is back. My viral load is currently at 1 million IU/ml. This completely sucks. 18 months of interferon and ribavirin including 5 months of an experimental polymerase inhibitor RG7168 aka RO5024048 that produced the side effects of weight loss, depression, inability to concentrate, lack of energy, memory going to hell, anemia, and I'm sure others, that the memory problems prevent me from remembering; all of this to achieve nothing. It is getting hit by the million pound shit-hammer all over again.

 I knew at the beginning that the traditional therapy only resulted in a 45% chance of clearing the virus. So when I had the chance to get into the trial of the RG 7128 aka RO5024048 polymerase inhibitor which, in early-stage experiments had demonstrated a rate of clearing the virus of up to 75%, I jumped at it. I'd hoped that the experimental drug would clear the virus. Even after the viral breakthrough that resulted in my expulsion from the test group I still thought that transitioning to standard therapy after the initial success of the experimental drug might give me a small leg up on clearing the virus.

Perhaps the fact that it took 12 weeks for the traditional interferon/ribavirin therapy to bring my viral load down from only 40,000 IU/ml to clear should have tipped me off. Maybe it should have shown me  that the strain of virus that I have would be resistant to my own immune system and traditional therapy and I would perhaps be more likely not to clear the virus then to succeed, but no one wants to face that possibility. When you have already been in a process for six months and you've already faced the side effects and found that, to a point, you can handle them; and you believe you have a chance of clearing the virus; and you don’t know what your health insurance is going to be like in another year or two or whenever a new therapy might come online; and the fact that you have insurance now; and you’re stubborn and you're optimistic; it all puts you in a mind to say I'm going to see if sticking this out will succeed in bringing me to a sustained viral response and a cure.

Well it didn't. So in a sense I look at the last two years of my life, the 18 months on the therapy and the six months beginning to recover from it until the day of the test, as being wasted. I did not get much accomplished during those two years. While I was able to do very good things at work (including expanding the scope of my operation, systematizing and streamlining all of the processes, integrating a part-time person and training them in handling the basics of the operation, and increasing sales and average of 25% per year), that is cold comfort. Just doing that, just functioning on a day-to-day basis and going to my job eventually took so much energy that it left little time and little energy for any part of a personal life. My work and efforts as a sculptor were minimal, my ability to do things with my friends and family were cut way down by the fact that it was exhausting to do anything for very much time at all. It all infuriates me even though I knew that it was only a 50% chance at success. I don't think anyone ever enters a situation like this thinking that they're going to fail and I certainly didn't. The fact that the therapy did not work leaves me feeling somehow cheated. It's not rational, but there it is. You feel that if you spent that much time, that much energy (or lack of it) invested that much hope and effort, something better should have happened. It didn't and I feel somehow empty.

All that being said, on the good side all my liver functions are normal. My doctors tell me that the results that they're getting from the liver tests would indicate that the time that I spent clear of the virus during the therapy, (which totaled about 12 to 14 months out of the 18), allowed my liver to begin to heal itself. The swelling is reduced. It is functioning well and I have bought additional time with a healthy liver. I also learned that I can handle the therapy. I learned that the side effects I got with the standard interferon ribavirin  chemotherapy and with the RG7128 are ones that I can manage. I know that a lot of people have a much more difficult time than I ever did during the traditional therapy. There are people who are so exhausted they can barely move; people whose anemia is frighteningly intense; people who have much more severe depression; people who lose even more weight than I did; people who have even less energy and people whose cognitive facilities and memory decline even further than mine. I realize that the ones who have it far worse than I did must feel even more empty or betrayed or depressed when they find out that it didn't work. Because as difficult as it was for me, if I had gone through even 12 months of the sort of difficulties that others with this disease undergoing the same therapy went through, I don't know if I could ever face doing it again.

 I'm sure at some point I will do it again. I don't like the idea of managing this disease. I don't like the idea of having something in my body that is gradually destroying my liver, breaking down my cognitive functions and creating in the long run a less energetic less mentally sharp individual. I don’t like the possibility of developing serious liver problems that might include liver cancer, cirrhosis and result in the need for a transplant. Though  my doctors told me that given my liver results I am the sort of person who is more likely to die with hepatitis C than from hepatitis C, I don't want to have it at all. The idea that a lifeless particle of protein wrapped around some DNA is working its way through my body destroying my liver doesn't fit my disposition. So I will try again at some point.

 I don't know that I will ever try interferon therapy again. It is extremely devastating and I don't know if I can face it even though I do suffer it better than many other people. There is a tremendous amount of research going on and a lot of that is oriented towards non-interferon drug combinations to attack the virus. There's a lot to look forward to and I know that I'm in good shape to see where it leads.

It's still depressing, it still sucks but you buck up and handle it the best you can. Even though I've been whining for most of this post, I know that my life is a hell of a lot better than a lot of other people in the world and especially a lot of other people with Hep C. Besides, Spring Training is right around the corner and how can you stay depressed when pitchers and catchers report in only six weeks,

Sierra Vacation One Year Later

At right about the halfway point in treatment last year, I took a short vacation to Camp Mather near Yosemite. It was a real challenge, particularly regarding side effects and was described in this post. Having actually enjoyed it despite the difficulties, my wife and I decided to do it again this year. It was a vastly different experience.

 Right off the bat, we didn’t need to take refrigerated drugs and the daily dose of pills was down to two (a thyroid pill and Celexa). Remembering last year’s difficulty breathing at altitude, I injected my last dose of Procrit a few days before we left. We then threw enough gear for a two month safari into the back of the pickup (it was a five day vacation – in a cabin) and headed up to Camp Mather.

 The biggest difference was the energy I had this year. Even being off the treatment drugs for only 10 weeks created a noticeable difference. There was a lot less exhaustion – I only needed to take one short nap every day – and I had the energy to do a lot more walking. I even played catch, Frisbee golf and kicked around a soccer ball with my wife during the stay. We even stayed up in the evening and played board games with some of our friends, though I crapped out on the late night wine and ranting sessions that are de rigueur for any vacation. It was wonderful to enjoy physical activities without gasping, nausea and spacing out.

 It’s great to feel some actual progress in recovering from treatment. I even pretend to see my hair growing back (I’m sure those dark hairs weren’t there before, both of them). Of course, after driving back to San Francisco, I went to bed and slept for 12 hours, then took an afternoon nap for two more. I guess I’m not quite yet the physical powerhouse I thought I was.

Seeing More Clearly After Treatment

Vision changes are a big part of the side effects of both standard treatment and several of the additional drugs either approved (boceprevir, telaprevir) or under study for treating Hepatitis C (RO5024048 RG7128). They can include blurry vision, changes in the strength of your vision, sparkles or light shows within or at the edge of your visual field and worst of all macular degeneration. The effects can vary in intensity during the course of treatment. Most of the visual side effects reverse after treatment is ended save for macular degeneration, which is permanent. In my case, the effects seem to be slowly reversing themselves.

In this post (about 6 paragraphs down) there is a description of the onset of the visual side effects when treatment began. At the time the primary effect seemed to be a reduction in my ability to focus on things that were close-up in my visual field. I lost most of my natural monocular vision in which the left eye focused up close the right eye focused at a distance. It eventually progressed to the point that, at the end of treatment, there was little difference between the two eyes. The left still focused a touch better close up and the right a touch better at a distance, but there was no longer a significant difference.

There was also some variation in the strength of vision. It seemed that from month to month there were variations in the amount of short sightedness I was victim to. Sometimes, it seemed my glasses were not nearly strong enough and other times they were far too strong. I took to not wearing them most of the time and carrying around reading glasses for when there was a need to focus closely (for those of you in the San Francisco Bay Area, Ichiban Kan the Japanese discount store has reading glasses for $1.50 per pair; and stylin ones at that). I decided not to get new glasses or even try to determine my prescription until the treatment was over.

Several months after I had been dropped from the experimental study and was on the standard treatment, I began to notice that there were sparkles in my visual field. They were not large nor were they particularly intrusive, but they were apparent when I wasn’t focusing on a specific area. They were also apparent at the edges of the visual field, particularly in low light. I kept thinking that I saw something out of the corner of my eye and when I tried to turn and focus on it, there was never anything there. It took a while to realize that it was due to the sparklies and not to flies, birds, mice, rain, ghosts or any of the other things that appear in the corners of your vision.

Now that 9 weeks have passed since finishing the interferon and Ribavirin treatment, there has been some reversal of the visual side effects. The sparklies in the visual field and at the corners of my eyes are mostly gone. They still appear when I am very tired, but they may have always done that and I wouldn’t know it given the state of my memory. The variations in my strength of vision have stabilized as well. There are no longer times when I cannot wear glasses because they make my eyes hurt. Perhaps it is time to visit the eye doctor and get a new prescription and even new glasses (Costco here we come). There has been no change in the loss of monocular vision. My two eyes remain slightly different, but the old ability to read with the left eye and focus long-distance with the right seems to be gone permanently.

The side effect of the eyes getting tired rapidly during reading and watching a movie, TV or computer screen has also begun to reverse. So much so that this past weekend my lovely wife and I were able to take in two movies in two days. These were not “films” either with long static takes of characters talking or meditative pans across beautiful scenery. These were eye-taxing action films with rapid changes in focus, explosions, chase scenes and all the things you watch movies on the big screen for. Yes, we saw “Cowboys and Aliens” and “Rise of the Planet of the Apes” - two brilliant examples of all that is right in Hollywood filmmaking. At least with Hep C, the treatment doesn’t make apes smarter and people dead. We got that going for us…

New Drugs, New Treatments, New Hype

In mid-June of this year while at a baseball game watching my childhood hometown Minnesota Twins defeat my adopted home town team San Francisco Giants, a friend asked if I was excited about the news in the paper that morning about the new cure for Hepatitis C. He said that it cured 80% of all patients in clinical trials and that the treatment might last only 24 weeks instead of the standard 48 week therapy. The news was stunning. Which drug was it? I had been keeping up with the various new drugs in the FDA approval pipeline and had never heard of one with a viral clearance rate of more than 65%. Of course he couldn’t remember the name and none of us had a smart phone with us, so it took until after game and back at home before I could do any research.

This article appeared in the San Francisco Chronicle. It stated that about 80% of HEP C patients “with the most common strain” and relapsers from previous treatment were cured by the new drug. The drug was the protease inhibitor telaprevir, brand named Incivek by its developer Vertex Pharmaceuticals. Imagine the amount of money they must have paid a naming company to develop that brand name; rolls right off the tongue. The results from earlier studies had indicated that telaprevir increased the Sustained Viral Response (SVR) in genotype 1 HEP C, the most common genotype infecting US residents, to 65%. It seemed prudent to search out the source material to sort out all these percentages. A quick search of the web found this press release. In the fourth paragraph of the release it stated that “The sustained virologic response for patients treated with Incivek across all studies, and across all patient groups, was between 20 and 45 percent higher than current standard of care.” This seems to indicate that the low end of the SVR rate was indeed 65% and the high end might be almost 90%. The article and press release also indicated that 60% of treatment naïve patients achieved a rapid viral response (RVR) in 4 weeks and these folks not only would only be in treatment for 24 weeks, but had a 90% chance of achieving an SVR as well. It is not clear what the SVR rate for the folks who don’t achieve a RVR and continue for 48 weeks of treatment has been in the tests. It is also unclear whether there is a difference in SVR rates between genotype 1a and 1b. Folks who had relapsed after previous treatments had a 32% SVR rate when treated with the telaprevir, interferon and Ribavirin cocktail. This is very good news indeed for HEP C patients.

A month earlier, this article appeared in the NY Times announcing the debut of Victrelis the brand name of boceprevir (again where do these brand names come from) another protease inhibitor, this one developed by Merck. This drug, which is taken for either 24 or 48 weeks in combination with interferon and Ribavirin, has an SVR rate for treatment naïve genotype 1 HEP C patients of 65-70%. The SVR rate for patients who relapsed after previous treatment is about 40%. Boceprevir is a bit different in that the patient starts with 4 weeks of standard treatment and then adds the boceprevir for either an additional 24 or 48 weeks depending on the viral response. So we have two competing drugs available whose addition to the standard of care treatment increases the SVR rate by a range of 20 to 40 percent. Good news indeed but what is the rest of the story.

The rest of the story has several chapters from side effects to cost of treatment. Looking at side effects first, both boceprevir (Victrelis) and telaprevir (Incivek) have additional side effects to add to those caused by interferon and Ribavirin and both can somewhat intensify the interferon and Ribavirin side effects as well.

Boceprevir can increase the risk of anemia and neutropenia, cause strange taste sensations and cause intestinal tract issues.
Telaprevir also increases the risk of anemia, causes diarrhea, and most importantly can cause an itchy rash. The rash can be serious enough to require that the patient stop taking the telaprevir.

The new drugs are very much like the established treatment in that those with lower viral loads at the beginning of treatment have a better chance of success than those with high viral loads. Also like the established treatments, anyone who has ever tried a treatment, whether standard or experimental, and failed also has a considerably lower chance of success.

Both drugs are protease inhibitors. This means that they inhibit the action of an enzyme that the virus needs to reproduce. They are similar to the protease inhibitors developed to fight the AIDS virus. This means that they must be taken on a fairly rigid schedule: three pills per day, one every eight hours. If that means waking up to take it, wake up you must. They also need to be taken with food, so you cannot pop a pill and run off. You have to have certain types of food with the dose of the drug. This means that for 12 weeks (telaprevir) or 24-48 weeks (boceprevir) your life will be scheduled around your drug dosing.

Both drugs are vastly expensive as discussed in this article. Boceprevir/Victrelis will cost $1,100 per week making the cost of a full course of the drug either $26,400 (24 weeks) or $52,800 (48 weeks) depending on your viral response. Telaprevir/Incivek has been priced at $49,000 for the 12 week course of treatment. This cost is in addition to the $15,000-$20,000 (24 weeks) or $30,000-$40,000 (48 weeks) for the interferon and Ribavirin with which they must be taken. This also does not count the cost of the Procrit to fight anemia ($500 per week) or the Neupogen to fight neutropenia (also about $500 per week) should you need them. There are also the costs involved with antidepressants, sleep medications, thyroid medications, pain medications and whatever you will be using to deal with the rash and itching in the case of the telaprevir.

It is also not clear how quickly insurance plans will add them to their drug formularies. Kaiser Permanente, my HMO here in California, has added both to its formulary. I do not know which other insurance providers have done the same. Even if they are added, it is not clear what the requirements will be for a patient to be eligible to be prescribed and how easily insurance companies will make them available. From an economic point of view they should make them easy to get as even at these prices the cost of treatment is still much less than the cost of a liver transplant.
For those without insurance, I do not know how anyone but the wealthy could afford the additional cost. The cost of standard of care treatment is by itself so high as to exclude many HEP C sufferers from being treated. There are programs to assist those with low resources to get treatment but even with the drugs deeply discounted the ability to come up with as much as $20,000 for a course of treatment would seem impossible.

Despite all these potential problems, the advent of new drugs to combat HEP C is excellent news. Ramping up the SVR rate to a range of 60% - 80% is a vast improvement over the standard of care treatment rate that topped out at 45%. Psychologically, it is far more encouraging to go into a course of treatment thinking you have a 2-1 shot at beating the virus than to go in thinking you have just under a 50-50 shot. These drugs are also only the leading edge of a wave of new drugs and new therapy approaches that are under research and testing. There are new polymerase inhibitor drugs that have SVR rates similar to telaprevir, but with fewer and less severe side effects. Testing on the holy grail of finding a treatment regimen that does not have to include interferon is also underway with early stage results coming in soon. Within the past year, scientists have discovered a method of growing the HEP C virus in the lab. This means that future early stage testing of drugs can be done directly on the virus instead of with animal models. This should increase the pace of research dramatically. In all it is a good time to have HEP C if you are one of us infected. There are established treatments, there are promising new treatments and there are drugs and treatments in the research and development pipeline that seem to point to future in which HEP C can be attacked and treated with a high expectation that it will be successfully cleared from the human body.

Perhaps we can believe the hype surrounding these new drugs. Despite the problems of determining the actual efficacy of the drug in your own case, the potential difficulties in obtaining and paying for the treatment and persevering through the side effects, they have advanced the cause of combatting Hepatitis C.

The more cures, the fewer pig livers will have to be implanted in humans (sorry, I’ve been reading far too many science fiction novels during treatment).

Night Sweats Redux

After finishing 18 months of treatment involving powerful, side-effect laden drugs one’s expectations are that once you are no longer taking the drugs, you no longer experience the side effects. This does not exactly seem to be the case. Shortly after the first week following the end of treatment, I began to experience night sweats again.

Within a few months of beginning the drug trial in 2010, I started to experience night sweats, as related in this post. The night sweats were intense with heavy sweat soaking through sleeping clothes and even requiring changing the sheets in some cases. These went on for several weeks until my body seemed to adjust to the various drugs and they receded to only an occasional event. This was the norm for about a year until they became a bit more common during the final 8 weeks of treatment. They were still not the heavy sweats that characterized the early part of treatment, but they did happend a few times a month toward the end.

About ten days after finishing treatment, I woke up on my back with a pool of sweat on my concave abdomen (did I mention that I had lost a bit of weight?). After a change of shirt and going back to sleep, I awoke later to the same condition. This happened three times during the night and by morning there were damp shirts hung all over the bedroom. It was unclear why it might be happening. My wife had recently had the flu and I was a bit feverish before retiring for the night so perhaps it was related to that. When it happened each night for the next week, it occurred to me that it might be related to the HEP C treatment. The heavy sweats have stopped, but in a milder form they have remained an event that occurs about 3 times a week.

It is not clear what the cause is. In my darkest moments, I remember that the symptoms for the onset of acute HEP C are flu-like, including fever, sweating and muscle aches. I felt some of them at the start of this round of sweats but it does not seem likely the sweating would have continued on for several weeks after the other symptoms disappeared. In talking to folks who have had relapses after treatment, they report that they relapse within the first month, which would fit the scenario, but they do not report having symptoms. It could also be related to stopping the other drugs being taken to alleviate the side effects of the standard treatment. Ambien was something I was taking every day for the final 2-3 months of treatment as sleep was not something that came easily or often. Ambien is not something that should be taken daily and even Dr. Sue had been more worried about the addictive nature of that than of any of the other drugs I was taking. There are some withdrawal symptoms that are noted for Ambien, but they do not indicate that they would go on for weeks after stopping. It could be that the long term use of interferon and Ribavirin has reset my internal thermostat. It always ran cold before as witnessed by the pile of covers on my side of the bed every night. Perhaps now it is more like my wife’s internal temperature gauge. She often sleeps covered only by a sheet on nights when I am swathed in blankets.

I hope it is something as benign as my body permanently running warmer than it used to. If nothing else, surviving summers in San Francisco will be easier if running hot, than if constantly cold. Until more evidence is gathered, the jury is out. In the meantime I am busy brainwashing myself that it is NOT because of any recurrence of HEP C.

The Disability Two-Step

Applying for Disability as mentioned in an earlier post, should be a relatively straightforward process. Contact your doctor and tell them you would like to go on disability and give them the reasons you feel it is necessary. With Hepatitis C, it is generally pretty standard for your doctor to have a very clear idea of what you are going through and why disability would help. You contact the state for a form, fill it out, take it in to your doctor, they fill it out, it is mailed back to the state. Then the state contacts your employer to confirm that you work there and what your salary is. You are sent a notification of the amount of money you will receive and within a few weeks of the start of your disability period, you begin to receive your benefits. Like all purportedly simple processes, the difference between the ideal and the real, the concept and the reality are far different. Such was the case with my claim as well.

After being advised by my friend Dr. Sue that I should go on disability, I approached my Human Resources department to get some basic information. They described the process, exactly as above, and that was the only thing they got right. They informed me that I would get between 75% and 95% of my normal pay but that I had to use up all my sick time before my benefits could start. Both of these statements were wrong. California SDI pays you 55% (in my case that meant $492/week) of your standard pay up to a maximum of $975 per week. So if you make $150,000 per year you would still only get $975 week. However, the benefits you receive from SDI are tax free, which makes them stretch further. You do not have to use up all your sick pay, if your employer grants you any that is. You only have to inform them if you are using any of it during the term of your disability claim. The HR folks also did not know what the status of my health insurance would be during the term of my disability. The moral here is check out everything for yourself, the professionals paid to assist you in these matters may not know what they are talking about.

I filled out the forms and took them to my doctor. He filled them out and they mailed them in to the state. The disability benefits start to accrue 9 days after the last day you work. I put down that my last working day was the 23rd of April. I also told them that I would be using 6 days of paid sick time to bridge the gap between my last day of work and the date my benefits began to accrue. This was fine with them and the said my benefits would start to accrue on May 1. The first payment would come 14 days after the benefits started to accrue. On May 2nd I received my official notice from the state of the amount of my benefits. Things seemed to be moving along well. On May 12th I received a notice that my benefits were not going to be granted and I could file an appeal if I so desired. The heartburn started on the spot. I called the included number and the courteous state employee told me that the notice of denial was a standard form they sent out when they had not yet received all the necessary paperwork. They had attempted to contact my employer 3 times by phone to no avail and had sent a form to them to fill out but had not yet received it back. He then told me to file an appeal to protect my rights and contact my employer to find out what was going on. I contacted them and was told that the form had been sent to the state the day before and they had no record of any phone calls about the matter.

A phone call to the state 5 days later to find out whether the form had arrived yielded the information that it had not. A different, but equally courteous, state employee said that employers failing to send in paperwork was the single biggest problem his agency had in processing claims. He said that the second most common problem they had in claim processing was doctors filling out the forms in completely unreadable handwriting. He mentioned that it was not uncommon for forms to be handed around the entire office in an attempt to find someone able to decipher what doctors had written on claim forms. He also said that filing an appeal was something I should do immediately. I filed an appeal that afternoon.

Two days later another courteous state employee called to inform me that they had received my appeal but still no paperwork from my employer. He then took my employment information over the phone and after asking me to swear that it was correct told me he would process the claim that afternoon. Seven days later I received my first payment. It was 25 days after my last day of work.

The form of the payment itself was another slight curveball. Rather than pay via check or direct deposit of funds into a bank account, the state of California now provides people who receive benefits with a debit VISA card. The disability account attached to that card is replenished by the state every two weeks with your payment. This is ostensibly to provide those without bank accounts an easier way to access their funds than taking a check to a check cashing shop. For anyone with a bank account it involves transferring money from the card to your account in order to pay your bills. VISA, of course, extracts small transaction fees for the various money movements. I can just imagine the VISA lobbyists talking to the state bureaucrats to get them to make this change. How many dinners, free trips and outright bribes did it take to get this deal done? Who knows, but credit VISA for seeing it through.

Things went swimmingly right up until I was about to finish up my treatment at the end of June. I contacted my doctor to confirm the end of my disability term and was astonished to hear that it was over on July 1. After asking how a patient who had been in treatment for 18 months and for whom the side effects were severe enough to eventually require a stint on disability could be considered fit to return to work full time 24 hours after the last dose of their treatment medication, they averred that they have made a mistake. After running some more forms back and forth and sending them in to the state, an extension till August 1st was granted.
An issue of primary importance when considering disability is what the status of your health insurance will be during the time you are disabled. Your employer is not required to pay your health insurance. They may if they choose, but they do not have to. My employer cut off my health insurance and offered my COBRA while I was on disability. Given that COBRA payments would have been in the neighborhood of $750 per month, it would have used up about 35% of my benefits just to pay health insurance. Without health insurance I could not afford to continue treatment, so this is a crucial consideration. Luckily, my wife has health insurance under which the spouse can be covered. If this had not been the case, I could never have taken advantage of the disability benefits on which I had been paying premiums the past 10 years.

Disability is definitely something that anyone in treatment should look in to if it is available to you. The rest you get helps your mental attitude, you physical condition and leaves you in far better shape to survive and prosper from your treatment. Treatment can be brutal and disability benefits can relieve some of that brutality for you.

Hungry

At the end of Hepatitis C treatment on June 30, 2011 I weighed 166 lbs. (75 kilos), a loss of 35 lbs. (15.5 kilos) from my weight before the trial started. Granted, my lovely wife had been assiduously packing the weight on to me before the drug trial began so it wasn’t as if I lost only muscle, but still 15% of your body weight is nothing to sneeze at. The great majority of the weight loss, 25 lbs. (11 kilos) came in the first 5 months of the drug trial. It held steady for the first 6 months of standard treatment, then there was another quick 5 lb. drop. It plateaued again for another 4 ½ months and then there was another steady 1lb. per week drop till the end of treatment. It was as if the body dropped weight until the metabolism adjusted to the drugs, then held steady until the drugs broke through the plateau then dropped more weight until another adjustment was made and balance was achieved again.

The first week after I finished treatment was the same as being in treatment. My weight was steady, my appetite was suppressed, my energy very low. After about 10 days, it was as if a switch was thrown in my metabolism. I was hungry constantly. Breakfast in the late morning (I was trying to bring my sleep cycle into line with the rest of the world and not having a great deal of success), then a sandwich an hour later. Some sort of lunch at around 2 p.m. and again something to eat ever hour or so until supper; after supper, more grazing until bedtime. I even woke up hungry in the middle of the night and had to eat an apple or banana so I could get back to sleep. This continued day after day for about 2 weeks. I was astonished at how much I was eating after 18 months of trying to convince myself to eat anything. The only problem was that my diet hadn’t made a change from the on treatment period. My doctor had encouraged me to eat whatever seemed appealing in order to keep my weight up. This meant ice cream, baked goods, cheese etc. The problem now was that these foods were being consumed in large quantities. Two weeks after the eating began, I had gained 7 lbs. (3 kilos). That’s a lot of weight, especially when you look in the mirror and realize it went straight to your abdomen.

Some changes were made to the diet after that realization, cutting down on the ice cream especially and trying to manage the urge to eat. I am down to 3 meals a day without much between meal eating, but am still eating a great deal more at each sitting than during treatment. One month after my metabolism decided it wanted food again, I am 10 lbs. (4.5 kilos) heavier than at the end of treatment. My head likes to believe that the weight gain has begun to change to muscle instead of fat, but convincing my waist of that is a bit harder to do. Still, it is a wonderful thing to enjoy food again. There is nothing like enjoying fresh tomatoes on lettuce and toasted bread, grilled ribs, asparagus and a wonderful ripe peach. This sort of talk is making me hungry again and luckily it is just about time for dinner. So on that note, I will sign off and fulfill my task of gaining more weight. It is a difficult job, but someone has to sit down and do it.

Speed Bump On The Road Back

Just in case I didn’t get the memo that it was going to be a long slow road back to full mental functioning, there was a reminder for me this morning. We had ordered a Chicago-style pizza for dinner last night and, as expected, there were leftover slices after we gorged ourselves. The plan was to take one of these massive wedges of dough and cheese to work for lunch. A good plan: easy, quick and needing minimal effort in the morning to prepare. Things did not quite work out that way.

I got up, did my stretching, drank my green tea (this is California after all) and took out the container with the pizza and set it on the counter. After a quick bathroom break, I returned to the kitchen and realized lunch still needed to be made. After moving aside an annoying plastic container, I laid out bread, cheese, roast beef, tomato and lettuce. Just at the point of finishing the sandwich and putting it into the waxed paper bag, I looked down and saw the pizza sitting right there on the counter were it had lain, forgotten (indeed, even shoved aside) during the process of making the sandwich. It turns out that my brain is just as capable of being distracted and forgetful 4 weeks after finishing treatment as it was during the height of treatment. You could say that there is nothing like the feeling of foolishness that accompanies this sort of brain lock, but I have felt it so many times during the past many months that it has become all too familiar. Here’s hoping that the brain fog starts to burn off in the near future.

The silver lining was that the pizza was just as good for dinner as it would have been for lunch.

Coming Back To Life

I finished my course of treatment for Hepatitis C on June 30, 2011. The last 6 weeks were particularly tough with bouts of nausea, some dizziness, decreasing red blood cell counts, consistent exhaustion and increasing mental fog. Eighteen months of interferon and Ribavirin apparently do a number on us humans. The good side is that at the end of the treatment cycle, the viral load was undetectable with negative viral activity. Now we wait for 6 months until January of 2012 for the follow-up test to determine if I have stayed negative and thus qualify for having a true Sustained Viral Response or SVR. It brings to mind the song from the Mel Brooks movie “The Twelve Chairs” with the chorus:

“Hope for the best, expect the worst
Some drink champagne, some die of thirst,
No way of knowing which way you’re going,
Hope for the best, expect the worst.”

By the way, did you know that Mel Brooks wrote the music and lyrics for the songs in his movies.

So we are hoping for the best over the next six months (though the thought that the next test occurs in 2012, the year of the end of the world certainly tempers the enthusiasm).

We return to the subject of the post after that small digression. On about the 8th or 9th of July, I was lying on the sofa catching up on the episodes of “Mob Wives” I had missed, when I thought about unloading the dishwasher and tidying up the kitchen counters. For months, this sort of urge was met with the thought that it could be put off until later that night or tomorrow or to some indefinite time in the future. But on this occasion, I arose from the sofa, walked to the kitchen and actually unloaded the dishwasher and wiped down the counters. It was the first sign that some mental and physical energy was returning. Over the next few days, I began to do a bit more. It was a great feeling to experience energy as opposed to lethargy. It genuinely felt like I was rising from the depths back to life. It’s going to be a long, slow struggle back to normalcy by all accounts, but as the old saying goes, “every journey begins with a single loading of the dishwasher.”

The Magic Bullet Theory

Waiting for the “Next Best Thing”


Last Tuesday was the annual Holiday Pot Luck for the twice-monthly Hepatitis C support group that meets in the California Pacific Medical Center Pathology Conference room. There were about two dozen people there and, in the tradition of potluck dinners everywhere, enough food for twice that number. Best of all, there were plenty of desserts.

Of the two dozen people or so people attending, about half were either currently in treatment or had successfully completed treatment; another quarter had undergone treatment and either failed to respond or the virus had reappeared after the completion of treatment and the last quarter had yet to make a decision about treatment. About half the folks who had successfully completed treatment and never had a recurrence of the virus were people with Hepatitis C genotype 2. This genotype has about an 80% chance of clearance, and excellent prospects of a sustained viral response, with 24 weeks of standard interferon and ribavirin treatment.

After people had settled down with their plates of food and glasses of non-alcoholic libations (ginger potions of all sorts were quite popular), everyone reported on their general state of health, how they felt and any significant issues they had that might be caused or intensified by the disease or their treatment status. Several common themes emerged as people told their stories.

The people who had successfully completed treatment reported that by and large they felt they were back to normal functioning (one individual reported that she felt that after 2 years she still did not feel she was back to her previous cognitive function level). They felt their energy had returned, they no longer had shortness of breath, their strength was back and generally they were physically in good condition. Most felt that their mental faculties and their memory had returned to pre-treatment levels as well. To a person, they reported that it took considerably longer to return to full function than the time that is considered standard by the medical establishment. The usually quoted time to recover from the effects of interferon, ribavirin and the other associated drugs used in treatment is 3 to 6 months. Everyone reported that the time it took them to recover from treatment was in the range of 6 months to 1 year with a few reporting longer times than that.

The people currently in treatment (and for that matter, the folks who had completed treatment) reported two side effects as most debilitating: fatigue and brain fog. The fatigue ranged from merely difficult to extreme with no one reporting only mild fatigue. That said, person after person stated that the most irritating and frustrating side effect was the cognitive deficit associated with interferon brain fog. It was not just the increased memory difficulties, it was the inability to concentrate, the ease of distraction, the loss of train of thought that drove everyone crazy. Most folks also reported nausea of varying degrees, insomnia, sweats etc.; but those paled in comparison to the frustration of brain fog and the annoyance of being tired all the time.

The rest of the people at the meeting, the non-responders to treatment and the people yet to attempt treatment, all had the same outlook: they were waiting for the new and better drugs to become available. They had very different reasons for this viewpoint, but it was surprising to see the uniformity of their point of view.

The non-responders and fail-to-sustainers had all failed at the standard interferon and ribavirin treatment. They and their doctors had come to the conclusion that the two drug standard treatment was not going to successfully defeat the virus in their bodies. They need the additional punch of one of the new drugs in order to have a real chance at success. You can’t argue with that conclusion, when what is available has failed, you have to await further developments to move forward.

The people who had not done any treatment had different reasons for waiting for the next new and better drugs. Many were afraid of the side effects but most were looking for a therapy with a better chance of success that the standard therapy. The standard treatment has about an 80% chance of clearing genotype 2 Hepatitis C. It has a 40-45% chance to clear genotype 1 Hepatitis C. The drug most likely to be approved next is Telaprevir, a protease inhibitor (Boceprevir, a similar protease inhibitor is supposedly not far behind). Telaprevir has demonstrated in research testing that, in combination with interferon and ribavirin, it has a genotype 1 clearance rate of about 60-65% (Boceprevir has similar test results). On the surface the reasons for waiting for the new drugs are clear-cut, 60% is a much better chance than 40%. There are a lot of other factors to consider before pinning one’s hopes on the next best thing, however.

First is the discovery of variations in the IL28B gene and how these variations affect response to treatment. If you have the CC variant of the gene, the evidence indicates that your chances of responding well to standard treatment rise to the 60% level, or about the same as the telaprevir response rates. The test to determine which variant you have is available, not extremely expensive and clearly gives information you can use to make a decision about treatment. For a more info the link is here.

Secondly, the new drugs are not assured of either approval or timeliness. The latest Telaprevir application was submitted to the FDA in November, 2010 which means a decision is 6 to 10 months away. Boceprevir has not even reached the “it’s coming in the next x months stage of rumor yet.” There is also the, admittedly small, chance that Telaprevir is never approved. I have many friends who are in the gene-splicing and drug development fields who report a number of instances when companies were extremely confident of FDA approval only to be turned down during the final application. The FDA might come back with concerns that require further testing or additional data submissions, all of which could move the timeline much further out. The promising new polymerase inhibitors (RG7128 and RO5024048 for example) are only just beginning phase II trials which means they are at least 3-5 years away from any sort of approval and only if they succeed in further trials. There are other drugs even further away, etc.

Thirdly, these new drugs are expensive. They project to be about twice as expensive as the current interferon and ribavirin. The plan is that you only need 24 weeks of treatment, but it will be a very expensive 24 weeks. Therefore the question of once the drugs are approved how long it will take for them to be added to insurance company drug formularies so they will be covered by your insurance becomes extremely important. As we all know, insurance companies can be quite recalcitrant about approving new therapies.

Finally, there are all the considerations about your personal situation. What stage is your liver disease? What is your viral load? What is your general health? How old are you? These questions only start to list your issues. What is your financial situation? What is your insurance coverage? What is your work situation? Do you have solid family support? If you have to go on disability, how would that affect your job future? Can you even tell your employer, family, friends and coworkers that you have the disease? All of these and more are considerations that may be more important than the rates of viral response of the various drugs.

Remember two things as think about all the ramifications of when and how to deal with your Hepatitis C: first, there is always a newer, shinier, more promising therapy in the future and second, the best is the enemy of the good.

Managing Serotonin Update

It’s been just over 4 weeks since I cut down on the drugs that affect the serotonin levels in the brain. I was taking trazadone for sleep, tramadol for pain and daily doses of Celexa for depression. I cut out the tramadol and the trazadone and, after consultation with my hepatologist Dr. Bzowej, replaced them with Ambien and Vicodin. The results have been significant.

I have noticed that I am physically calmer. My hands are steadier and the random muscle twitching I have been experiencing has receded a bit. I still have all the hyperactivity behaviors I’ve had all my life (leg bouncing, pacing, etc.) but I am not as physically tense and tight as I was 4 weeks ago. My teeth-clenching and grinding have both subsided and the tendency to get caught in negative mental feedback loops (or to put it another way, become obsessed with other people’s irritating behavior) has also declined. Not to be continually catching myself thinking about other people and their foibles really reduces the stress load.

Among the downside to the change is that I am now using Vicodin for pain. Tramadol was relatively mild in its mental effects compared to vicodin. The days I have to take two doses to relieve the aching and allow sleep leave me loopy while I’m taking it and groggy the next morning. Given that serotonin overload can result in seizures and occasionally death, I’ll deal with vicodin’s side effects, it’s just that losing even more mental acuity while I’m taking it means I have even less to work with.

Ambien works differently as well. It is not as strong as trazadone. That means that I don’t wake up groggy, but I also wake up much more during the night. Trazadone would generally allow me to get at least one stretch of 3-4 hours of sleep during the night. The ambien puts me to sleep more gently but also not as deeply and I generally sleep for no more than 2 hours at a time. I wake up feeling rested so it is apparently having the desired effect, it just accomplishes it differently.

The change in medications has done me good. This reinforces the fact that you have to pay close attention to your own physical state and close attention as well to your drugs, their doses and their interactions. Don’t be afraid to talk to your doctor about any symptoms you think may be related to any of your drugs. They can’t help you if you don’t talk to them. Make sure that you get your questions and concerns are answered in any meetings you have with your doctors and nurses.

Now that my mental state is calmer and steadier and my energy is returning after the emotional roller coaster of the San Francisco Giants World Championship drive, I hope to have more frequent postings. Thanks to all of you who have commented and offered support. I hope the rally thong ends up in Cooperstown…

Memory Deficit Side Effects May Be Permanent

There was a guy I knew years ago who had the talent of entering a conversation about almost any subject with the line, “let me tell you a story about that.” Strangely enough, the story was relevant to the subject an uncanny amount of the time. I don’t have that same talent, but that won’t stop me from starting off with a story.

The day that I got the news that my viral load was undetectable or “negative” in the parlance of the hepatology folks, I wrote an entry about the motivation that gave me to pay special attention to my drug dosing regimen so as to give myself the best chance to succeed at having a sustained viral response at the end of treatment. Motivated though I was, I forgot both my evening Ribavirin dose and my evening injection of interferon on that very day. This was not disastrous as I had already taken 600 mg of ribavirin in the morning and I was able to give myself the interferon the following day. Nonetheless, it shows the power that interferon brain fog has to confuse even in the face of sincere dedication.

The following week I had my regular appointment with my hepatologist Dr. Bzowej. We discussed my test results, my general state of health and how I was reacting to the medications I was taking. I went over the various physical reactions I was having to the drugs and how those reactions had changed over time. She then quizzed me about my mental state. I told her that my memory had deteriorated quite a bit over the course of treatment and that my ability to concentrate and solve problems had also taken a hit. These are expected side effects of the interferon and ribavirin drug combination, but Dr. Bzowej had some new information about them that is quite disturbing.

The memory and cognitive deficits that Hep C treatment inflicts on those who are undertaking it have been believed to be temporary. When the patient stops taking the drugs, those side effects gradually disappeared and the patient returned to the same mental acuity they had before treatment began. This is apparently not always the case. Dr. Bzowej related that in the past year, she has had two patients whose symptoms have not improved. Their memory and concentration problems have remained over a year after no longer taking interferon and ribavirin. She is concerned enough that she referred me to a neuro-psychology specialist for a set of tests to determine my current memory and cognitive abilities. She will then have me tested in anther 3 months to check whether there has been further deterioration and if so, what course of action we should take.

This scares the crap out of me. The one thing I have always been able to rely on is my brain. I have neither dazzling good looks nor great athletic ability or physical strength. I have some amount of personal charm, but certainly not enough to depend on for a living. Nor do I have vast amounts of physical or moral courage. What I do have is a good brain. I have intelligence, creativity, the ability to learn new skills relatively quickly and the ability to solve problems. This has always been the rock I could depend on, and if it crumbles, I don’t know where it leaves me. A pile of sand on the beach maybe; certainly it changes who I am and what I can do.

The same applies to anyone else considering entering treatment. Talk to your hepatologist about this issue. Ask if it is possible to be tested for memory and cognitive function before treatment begins to establish a baseline for future reference. While in treatment keep your doctor informed of the symptoms of memory and concentration loss. You have to decide if being cleared of the Hep C virus is worth the small possibility of permanent brain function damage.

I’m still glad I entered the study and am now in standard treatment, but I don’t want the price to be permanent memory disability no matter how small the chances of that happening.

It Is Chemotherapy; It Is Not “Treatment.”

The statistics speak for themselves. Over 4,000,000 people are credibly estimated to have Hepatitis C in the USA. The research money devoted to finding a cure for Hepatitis C is about $20 per infected individual. As a counter example, about 500,000 people have HIV/Aids in the USA. The research money devoted to finding a cure for Aids is $2700 per infected individual. You do the math, research money in the USA for Aids: $1,350,000,000; research money in the USA for Hepatitis C: $80,000,000; fourteen times the money for ¼ the total number of patients.

I do not begrudge the money granted to research on AIDS. I do not begrudge the money granted to research cancer or heart disease or tuberculosis or any other life-threatening disease. All these diseases merit serious study. I am interested in why Hep C is so underrepresented in the research funding arena. A few thoughts have been knocking around my head concerning that area.

The closest disease example I can think of to Hep C is HIV. Both groups of people infected by the particular disease are stigmatized to one extent or another. The AIDS community was painted from the very beginning as promiscuous, drug using homosexuals – hard to beat that for a stigma in American society. Hep C has been characterized as a disease of drug users and needle sharers, another big no-no in the USA. Yet after about 3 or 4 years the AIDS community was well organized, aggressive, public and effective in lobbying the drug companies and the FDA. It took a long time and a lot of hard work, but they got a lot of attention, a lot of money and some effective treatments leading to a high rate of long-term survivors. One of the reasons that they were effective was that they were a unified, identifiable community, stigmatized or no, that was able to leverage their movement for gay rights onto the movement for HIV research and treatment. The out of the closet gay community led the way in publicizing the disease and the need for research.

Individuals infected with Hep C are spread across wider segments of society. They are present in larger numbers across various sexual, gender and racial segments of society and a lot of them are still in the closet, as it were, regarding their disease. While there are advocacy groups, support groups, web sites, etc. There is not a tight, vocal, aggressive group lobbying loud and hard for additional funding. We need to have an out of the closet group of Hep C infected being in your face about the situation regarding research and treatment.

Another problem we have is that Hepatitis C patients undergo “treatment” or enter “standard of care” or are in a “study” or are utilizing “alternative therapies.” We need to call a spade a spade here. Hepatitis C is fought using chemotherapy, not “treatment.” Calling it what it truly is magnifies the significance of what people with Hep C are going through. Everyone knows someone who has undergone chemotherapy for breast cancer or colon cancer or leukemia or prostate cancer and they all understand how serious and invasive it is. By referring to Hep C treatment as treatment or Standard of Care or therapy diminishes the seriousness of the disease itself and the regimen used for attacking the virus. We need to stop minimizing it. What we go through is not treatment; it is hard-core chemotherapy with all the attendant problems and side effects.

To use myself as an example once again, I am 9 months into chemotherapy for Hepatitis C. I inject 3 drugs on a weekly basis: Pegasys, Procrit and Neupogen. I take four additional drugs on a daily basis: Ribavirin, Celexa, Levothyroxine and Folic Acid. I take three additional drugs on an as needed basis: Trazadone, Tramadol and Ativan. I am using 10 different drugs to attack the Hep C virus and to manage the side effects of the drugs that are attacking it. If that does not qualify as chemotherapy, what the hell does?

I have side effects ranging from nausea, fatigue, hair loss, muscle pain, joint pain, fevers, rashes, night sweats, low white blood counts, anemia and brain fog (because of the brain fog, I’m sure I have forgotten some of the side effects). If that array of side effects does not indicate I am undergoing chemotherapy, again, what the hell does?

It is time to call what we endure to fight the Hepatitis C virus what it is: Chemotherapy. It is invasive, disruptive and long lasting. In fact Hep C chemo generally lasts for 48 weeks. That is considerably longer than the chemo and radiation regimens for a number of cancers and other diseases. This is a serious process.

Our disease is serious and ultimately fatal, our method of attacking it is a long course of difficult chemotherapy. It does neither our disease, our treatment or ourselves as patients any favors to be less than open about the seriousness of our disease and the long, difficult and exhausting regimen of chemotherapy we undergo to fight it. Let’s do ourselves the justice of calling it what it is.

Thanks for listening to the rant. I am on vacation for the next week and will have more bile when I return...

Careful Planning Meets Chaos Theory

When Chaos Theory first became widely discussed years ago, there was a quick and dirty example of it that made the rounds: Chaos Theory can be illustrated as your typical day. You wake up in the morning with a certain plan or pattern for your day. You have places to be and tasks that need to be accomplished and you think that they can all fit into your day. Then your day happens.

As you get dressed, your shoelace breaks and you realize you don’t have any spares. You unthread one from another pair of shoes and go to make breakfast. You find that someone has used the last of the ground coffee and you have to grind some. There is no orange juice for your smoothie, so you have to hustle up some English muffins for breakfast. You find that the deli meat and tomato you were going to use for your lunch sandwich are gone and that means you have to buy something for lunch. All this combines to get you out the door a touch late and there is a bus stall on your way to work. You are late to work and that pushes back your first meeting. The meeting runs long. There is not enough time to complete the spreadsheet work you were going to do before you need to check in with the contractor working on the office. Lunch gets pushed back and you have to take additional time to go out and get food. All this shortens your afternoon and you absolutely have to be at little league practice (you’re the coach) or 16 kids will be standing around. Etc, Etc, Etc. By the end of the day, the resemblance to your morning plan may be only a passing one.

The same thing occurs when you attempt to plan your activities around your treatment regimen. Chaos has the same domino-like effect. It ambushed me just two days ago.

I had a fairly heavy day at work, packing and moving many boxes of books, rearranging inventory and working through floor plans for a 400,000-book sale. I felt all right when I got home, but I realized I had pushed it and decided to stay home instead of making a run to my studio. I knew that my wife worked late the next day and I could handle what I needed to do tomorrow evening. At 1:30 a.m. that night however, tired as I was, I was wide awake. I had to get some sleep and broke down and took a Trazadone. I took about an hour to work, so I managed to get 4 hours of sleep and woke up with a logy feeling from the sleeping pill. By the time I got home after work, I went right to bed and slept for 3 hours. I was still tired enough that I went to bed early and slept for 8 hours (as treatment veterans know, 8 hours sleep can be a miracle). I did not even manage to get much done at work much less do any of the small tasks I had hoped to accomplish in the evening. The lack of accomplishment that day affected the next and it is only now that I can plan to get what I wanted to do yesterday done tomorrow evening, if all goes well.

Planning is good, lists are good, notes to yourself to remember that you forget are good, but the best-laid plans can definitely be put paid by a bout of treatment-derived chaos…

Feeling Better On Standard Of Care

Being treated on Standard of Care as opposed to in a drug research trial can make a big difference in your general feeling of health. It allows you to use drugs that directly counteract the characteristics of interferon and Ribavirin that depress your red and white blood cells. The use of Procrit to keep the hemoglobin level up and Neupogen to boost the white blood cell counts can have effects that go beyond the specifics of maintaining minimum levels of blood components.

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…

Walkin’ After Midnight

What with the general insomnia that the interferon and ribavirin treatment can bring about, combined with the pure nervous overload of my recent bout of serotonin syndrome, I have found myself pacing around my house in the middle of the night with some frequency in recent days. If I start at the back of the house and walk though the “breakfast room,” the kitchen, the dining room – such as it is, the living room and return on the same track, I walk about 90 feet. If I do ten laps it is 900 feet, twenty makes 1800 and 25 laps is just under a half a mile. It takes about 15 minutes to do 25 laps as I can’t really build up a lot of speed in the dark because the bruising on the shins becomes quite painful if one is not careful to watch where one is going. This pacing generally quiets down the leg jitters and twitches and tires me out enough that I fall asleep after going back to bed.

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.

Serotonin Syndrome

I had a bout of serotonin syndrome during the past several days and it was quite an experience. It began last Wednesday the 27th as I started to feel a bit jittery while at work and had a few episodes of chills that evening when I was going to bed. I continued to feel jittery, nervous and had some muscle twitches on Thursday. I went to the Giants game that afternoon (it was a 4:05pm start) and got quite chilled by the end of the game. Even after arriving home I noticed that I continued to be cold and had a lot of jitters and muscle twitches.

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:
· Restlessness
· Hallucinations
· Loss of coordination
· Fast heartbeat
· Rapid changes in blood pressure
· Increased body temperature
· Overactive reflexes
· Nausea
· Vomiting
· Diarrhea

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.

The Little Things…

Slogging ones way through the cycle of treatment, you really do start to appreciate little things. You have to let go of the level of activity and accomplishment you had before the relentless round of powerful drugs began. It’s either that or drive yourself crazy with frustration and depression. On the other hand, you can begin to appreciate as accomplishments things you either took for granted or viewed as things to get out of the way in the past; for instance: housecleaning.

My wife is the beneficiary of this newfound appreciation of accomplishing small tasks. The house has been a bit cleaner, in some rooms anyway, than it was before I started treatment. Weekends usually find me in the headache, backache, nausea, fatigue, and muscle weakness phase of my injection cycle. This generally means that I don’t get out and do much outside the house on at least one of the weekend days. But I can clean the bathrooms, or degrease the stove, clean the grout, you know, all the delightful tasks that you generally find any excuse to avoid. When you spend the day really getting some part of your environment clean, it makes you feel better. You’ve done something good for yourself and your family. It may not be much, but it does have the feel of accomplishment. And there is always the benefit of having your wife say, “Honey, did you clean the cooktop? It looks like new.” As any married guy knows, a happy wife makes for a happy husband.

Reorganizing is another manageable task that can give you a sense of progress. Over the past several weeks, I have opened cupboards, ventured into closets and examined boxes that have not been opened, ventured into or examined in months (okay years, but that might be revealing too much…). It is amazing how much room you can create just buy arranging things in a logical way instead of the “throw it in and close the door before it can escape” method. The archaeological finds you can make in the back of your closets are quite amazing as well. When did you wear those shoes, where did that shirt come from and I don’t remember that photo at all are the sorts of reactions you can expect. There is nothing like the joy your wife expresses when she discovers that there is now additional room in the closet for more stuff!

After a day of cleaning, reorganizing, weeding, or some other task, there is also the joy of flopping down in front of the TV and discovering that the movie “Juno” just started and you can recover while enjoying a great flick. Small movie, but huge enjoyment.

Another thing I have had to learn to accept and let slide is the effect brain fog has on my ability to write. It’s not hard to sit at the computer and write; I have the energy to do that. It is the frustration of sitting in front of the screen while trying to remember where I was going with a particular story or experience. Combine that with not be able to remember the words for certain thoughts, actions, feelings and even places and things and it really drove me crazy. Now I just sit here and let it slide. It’s still annoying, but the flip side is that I can genuinely say to people, “I have no idea,” or “I don’t remember that at all” in all sorts of situations. Gets you off the hook when your blank look of incomprehension is clearly real.

I would the mindset resembles the one touted in the AA serenity prayer. Unfortunately there is no chance that I will have the wisdom to know the difference…

Since We Were Talking About Side Effects…

The past four or five days have seen another shift in the nature of the side effects associated with treatment. Generally, I have noticed that the side effects I am experiencing are consistent for an extended period of time. The cycle of flu-like symptoms, fatigue and nausea has consistently started about 14-18 hours after the interferon injection and lasts about 36 hours. The fatigue also continues to moderate through the week after the interferon injection and my best days are usually Wednesday and Thursday, just before my next injection. The headaches and dyspepsia (which they define as an overly full feeling and general stomach discomfort) are intermittent but they happen for a few days each weekly cycle. This experience of side effects has been the same for about 10 weeks. This week saw changes in some of the effects and the resurfacing of one that had disappeared 10 weeks ago.

The last 5 days I have been mildly nauseous for most of my waking hours. This has also been accompanied by a bloated feeling in my stomach. I also had a return of dysgeusia (a change in the taste of food) as well. The nausea didn’t seem like much of an issue to me, although it did keep me from doing some of the things I was planning. I wasn’t running to the bathroom to vomit, I only had to lie down a couple of times and mostly I could ignore it or wait it out. Then I woke up this morning without it and realized how good it felt to just feel normal. There is nothing like suddenly not feeling a side effect to make you realize just how crappy it had been making you feel. I may have been tired all day today but damn, I felt good!

I have also had yet another change in the taste of food. The last one came about the time I started taking antidepressants and resulted in ice cream suddenly tasting good again. This time I have become extremely sensitive to things that taste sweet. I tried to eat a piece of chocolate on Thursday (yes, I shouldn’t be eating chocolate, see here, but I am weak) and it was so sweet I couldn’t finish it. Ice cream has once again become something I just can’t face eating as well as things like fruit preserves. I realized how extreme it had become just this evening. I had bought some sweet corn (25 cents an ear) and after boiling it up to have with sausage and potato salad, I could barely finish eating it as it seemed to be sickeningly sweet. Sweet corn, along with tomatoes, one of the iconic tastes of summer, what is Hep C treatment turning my body into?

I am now injecting 3 drugs per week, interferon, Procrit and Neupogen, so that might have something to do with the change in side effects. It might just be long-term sensitization to the drugs. It could be the changes in white and red blood levels or the interaction of the 7 daily and weekly drugs I am now taking, who knows. It seems my body is reaching a new rapprochement with the drugs I am taking and that it might mean a new cycle of side effects to get used to. It could be worse, the next time it might be grilled sausage that starts to taste like cardboard, anything but that…