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…

RO5024048 Side Effects Reconsidered

Now that I am out of the study and on the Standard of Care of Interferon and Ribavirin, I have been looking back at the first 8 to 12 weeks of treatment to try to determine whether the RO5024048 polymerase inhibitor had side effects of its own, whether it intensified the side effects of the interferon and Ribavirin or did both.

As I have mentioned before in this post, I believe I received the study drug at the beginning of treatment. My viral load dropped log 3.6 or so during the first week of the drug trial, which is almost unheard of on the standard of care. I have yet to drop a full log number from the peak viral load after my viral breakthrough 5 weeks ago now that I am on Standard of Care treatment. This just reinforces my belief that I was given RO5024048. That said, I do not know either how long I received the study drug, nor the size of the dose I received. I could have received 500 mg for 12 weeks, 1000 mg for 12 weeks, or 1000 mg for 8 weeks. In any case, I believe I received the polymerase inhibitor for either the first 8 weeks or the first 12 weeks of the study.

Looking at the list of side effects from the drugs involved I can draw some conclusions about the variation in them as the study went on.

Nausea: seems about the same throughout the study, mild but occasionally intrusive
Vomiting: only happened once
Diarrhea: definitely more serious at the beginning of the study and gradually disappeared as the study went on
Abdominal Pain: is more noticeable in the past 8 weeks
Anorexia: I don’t believe I had it
Dysgeusia: Didn’t notice it until about 8 weeks into treatment
Dry Mouth & Dyspepsia: consistently present throughout treatment
Anemia: seems worse now that I am on standard of care
Neutropenia: set in about 8 weeks into the study and has been consistently present since
Fatigue: seems a bit better since I have been on only interferon and Ribavirin
Chills: present the first several weeks of the trial has disappeared since
Fever: cyclic with the interferon injection schedule throughout the trial
Muscle Pain: intermittently present throughout treatment up to the present, also a general feeling of muscle weakness and fatigue after exertion
Joint Pain: present during the first few months of the trial not present now
Headache: present throughout the trial, more intense early in the trial and during the past 5 weeks
Rash: Never a big problem, but more noticeable during the first few months
Dizziness: only when taking some of the ancillary drugs
Anxiety: peaked during weeks 12-18
Depression: peaked during weeks 10-18
Insomnia: consistently present throughout treatment
Irritability: very irritable early in the trial, became a problem again in weeks 12-18, not a problem since introduction of antidepressants
Throat Pain: have not had any
Injection Site Redness: has not appeared at any time
Sinus Congestion: tends to occur during the first 4 or 5 days after each interferon injection
Alopecia: Hair loss consistent through first 20 weeks of treatment, has moderated since
Blurred Vision: not specifically noticed, but my close focusing ability deteriorated immediately at the start of the trial and the deterioration has remained
Eye Pain: have consistently had eye pain. It tends to happen when attempting to focus on something relatively close to my eyes. Generally moderates when I relax my eyes and my focus
Blood Sugar Problems: none
Back Pain: tightness occurs within a few days of every interferon injection
Laryngitis: none
Sore Throat: has occurred intermittently since the start treatment
Loss of Concentration: As the treatment progressed, my ability to concentrate noticeably declined at about 2:30 every day
Confusion: my short term memory has declined noticeably since the start of treatment
Liver Problems: I developed a hypothyroid condition starting at about week 10


As I look over the list of side effects I notice only a few that seem like they could be directly related to the RO5024048. Diarrhea is something that was only a problem during the time I was on the test drug. Chills have not really happened since the first 8 weeks either. Fatigue seems to have been amplified a bit by the polymerase inhibitor. Joint pain also seemed to disappear after the first 8-10 weeks of the trial. The rash problem was never more than an annoyance and was more extensive during the first 8 weeks. Irritability was definitely high at the beginning of the trial and has moderated since them, particularly since taking the antidepressants. The vision change happened right away, but I also noticed that there was a bit of change to it when I went back on full interferon doses 5 weeks ago.

Most of these are also side effects of the interferon and Ribavirin so the fact that they have moderated over time might just be that my body acclimated to the drugs. If I had to make the call, I would say that diarrhea, joint pain fatigue and rash were all either caused by or intensified by the RO5024048. It seems that the polymerase inhibitor is an easier to tolerate drug that the protease inhibitors such as Telaprevir and Boceprevir. The research coordinators I talked to all said that the Telaprevir study they had run had been much harder on the patients in terms of side effects (especially rash) than the RO5024048.

Given that it seems to hit the virus like the blitzkrieg hit Poland and that it appears to have a more moderate level of side effects than some of the other new drugs, RO5024048 seems to have a bright future fighting Hepatitis C.

Ch...Ch...Ch...Changes

A few weeks ago, there was a post from TC who mentioned that they were just starting treatment, had had their first shot and no serious side effects yet. I hope it is still going well for TC and I wonder if they are seeing some changes.

I have noticed that the side effects and general overall feelings of health are very fluid during treatment. I have only been on the therapy for 8 weeks and yet I have had great variation in the range and severity of the effects of the meds on my body and mind.

At the beginning, I had a lot of emotional swings, lots of tears, ups and, more particularly, downs in my mental state and just not being able to predict moment to moment how I was going to feel. 8 weeks later and my emotional state is more stable. It is stable at a lower level, but stable. I am not moved to tears as easily. It still happens, it just takes better songs and movies to do it. I don’t get up and down as much and I am more likely to be able to keep an even keel in my dealings with others.

Why just today, while setting up a booth at the SF Antiquarian Book Fair, I was able to shoo away the aggressive and persistent dealers who insist on trying to root through your stock before you even set it up without blowing up at any of them or banning them from the booth. I would not have been able to have that level of equanimity a few weeks ago. Some of this is due, unfortunately, to having less energy and personal affect than before, but at least it allows for more predictable and reasonable behavior on my part.

For the first several weeks, I always had chest pain for 2 or 3 days after the Interferon injection. It feels, like someone said in one of the books my wife bought, like there has been a football stuffed into your chest. I do not get that much at all anymore and if I do, it is only for a few hours or so.

A couple of weeks into therapy I started to get mild rashes and itching, particularly at night. It was annoying and played hell with my sleep, which is the last thing you need with Hep C. I have not had rashes for 3 or 4 weeks now and the itching is now confined to a bout of intense itching, generally on the tops of my feet, every 10 nights or so. It is really intense and drives your crazy for a while, but I can handle it if it stays at 10-day intervals.

I also noticed that my eyes changed very rapidly during the first 4 weeks of treatment. I have natural monocular vision which means that one eye focuses on close things and the other on things far away. Even though I have glasses (bifocals even) and use them for reading at night and in the morning, I generally did not need them during the day for my normal activities. My left eye, the close focusing one, has lost a great deal of the ability to focus on small print. I now have to wear glasses for a lot of the reading I used to do without them, or suffer headaches from trying to focus. It happened fast enough that they sent me back to the eye doctor to see if anything even more serious was going on (cataracts, macular degeneration, etc). Thankfully, nothing except my losing the ability to read without glasses. It seems I am getting old, according to the cute young eye doctor. Since I am now much more stable and predictable in my emotional states, that momentary feeling of rage at the cute young eye doctor must have been an anomaly.

I also notice that in the past 2 to 3 weeks I get light-headed more easily than I did at the beginning of treatment. I have to be careful about getting up quickly and moving quickly as this triggers the feeling, sometimes quite acutely.

The other noticeable change since the beginning of treatment is in my general energy level and my level of muscle weakness. Both have been trending consistently down since the start. It has happened gradually enough that it took awhile for me to credit the treatment regimen for the effects. It was 4 or 5 weeks after the start that I really noticed the fact that doing something normal like the laundry left my arms tired, or that walking up a flight of stairs with a box of books left my legs burning. None of these sorts of activities bothered me at the beginning of treatment.

Again today, after spending 3 hours setting up the booth, I went home and immediately took a 3 hour nap. I was exhausted. This is an example of my lower general energy level. I cannot move as quickly. I have to do things more deliberately and slowly. I have to pace myself very precisely to make sure I will get the things I need done.

It is interesting that it affects writing these posts as well. One of the reasons I don’t do it everyday (given that sometimes I just don’t have a damn thing interesting or worthwhile to say) is that I get home from work and a bit of shopping and I am just wiped out. The idea of sitting and writing a post just seems like the most challenging thing I can imagine. And the bed, oh yes the bed, it so soft and warm and fluffy. With the nice sheets and my lovely wife and, well no need to wax rhapsodic about the desire to lie down and rest, we all know the joys of that. Speaking of which, the bed is calling to me now and it doesn’t sound like David Bowie either.