Leaving the Support Group

As discussed previously in this post, support groups are an excellent program for HEP C sufferers. They provide a safe and secure environment to talk about the disease. They are a useful pool of knowledge about the side effects, the strategies for coping with them and, of course they provide a wealth of information about treatment. The sheer relief of finding people who have had similar trials, successes, and failures is worth attending in itself. All that being said, I stopped going to my support group in January of 2011.

Some of the reasons are the same as the ones described in this post, some are more personal. The overall tone of the group began to seem as though it was a group therapy session for folks with social interaction deficits rather than a support group dedicated to dealing with HEP C. The amount of time spent discussing the relationships and personal difficulties of the people in the group began to outweigh the time spent discussing the effects of HEP C on their lives and the sharing of knowledge about facing and treating the disease. While this kind of discussion was clearly important to those who initiated it, it seemed to me to be a case of too much information and too much bitching. It never bothers me when someone bitches about the difficulties the disease or its treatment creates in their lives, it does not seem relevant to here repeated complaints about their fathers, mothers, brothers and others in their lives. This may very well be an example of my being selfish and not caring enough about my fellow HEP C sufferers. I fully admit this. But I would rather spend the time talking about the disease, the treatments, the knowledge others have about these things and the general state of the HEP C community, research and public awareness of the disease. All of these concerns can be personal and can intersect with the personal lives of the folks with the disease; I just don’t want to hear about their landlord having a problem with their cat.

It came to a head when I realized that I had to take an Ativan before going to the meetings in order to get through them without becoming anxious and upset. It seemed that the requirement to be tranquilized to go the meeting was probably a sign that they had outlasted their usefulness. I still remain in contact with a few of the people in the group, but the dynamics of the actual bi-weekly meetings just became more than I could stand.

I still believe that support groups are a great resource. If you have one in your area you should definitely check it out. The chances are that it will be a great source of emotional support and information. Everyone with HEP C deserves all the support they can get and a support group is a great place to seek it. Perhaps those of us who are surly loners just can’t handle all that good feeling. Ah well…

Minding Your Drug Interactions

Among the disadvantages of being in a drug research study is the tendency for discontinuity in your medical care. The RO5024048 Roche study that I participated in was run by Dr. Natalie Bzowej. It was administered by the Hepatology Center at California Pacific Medical Centers (CPMC). CPMC is a first rate institution and they do cutting edge Hepatitis C research. The doctors are excellent, but as is true with specialists everywhere, they are busy people with many patients. When I screened for the study, I was examined by Dr. Frederick. For early symptoms of rash, sweats etc, I was examined by Dr. Merriman. When I had difficulty with pain issues I was examined by Dr. Bonacini and prescribed Tramadol. Later, when I was having trouble with sleep, I was examined by Dr. Frederick and prescribed Trazadone. When depression issues cropped up, I was examined by Dr. Bzowej and prescribed Paxil. and added Ativan for use as needed. After I reported difficulties with the Paxil, I was seen by Dr. Frederick again and he changed the antidepressant to Celexa Finally, my thyroid function was affected by the research meds and I was put on Levothyroxine by my primary care doctor.

Over time, this can add up to a significant number of medications creating their own set of interactions with each other that have to be carefully attended to. This is something that you should not be leaving solely to the doctors treating you. All the doctors in the hepatology center work on the same team. They are all involved in doing research and, to the limits imposed by patient and study confidentiality restrictions, they communicate with each other and share patient information. However, each doctor has preferred medications they are familiar with and prescribe regularly. This creates a situation in which each doctor is thoroughly familiar with certain meds and they may not be conversant in the effects and interactions of meds preferred and prescribed by the other doctors. You have to do your own research on the drugs you are taking and the potential interactions between them all. I found the drug interaction database at drugs.com to be particularly helpful. If you find something, contact your doctor and get their response. If you feel you need to change drugs, tell them. Keep at it until you get answers that satisfy you.

In my case, I was prescribed tramadol, trazadone and celexa. All have the effect of inhibiting serotonin reuptake in the brain. While this is a good thing for combating depression, if it results in an overabundance of serotonin in the brain, it can cause serious problems: irritability, confusion, tremor, stronger reflex reactions, sweats and potentially even seizures. I do not think these would have been prescribed together if all my symptoms had manifested at the same time. But as each was prescribed for a symptom that was occurring at separate times in the study, I ended up taking them all. There are days when I have to take all three and it is on those days that I have been noticing an increase in my some of my symptoms.

I have increased irritability, a general increase in physical tension and in activities like rubbing my hands, pacing, grinding my teeth, etc. This is all symptomatic of serotonin syndrome which I thought I experienced a few months ago. I am seeing both my primary care doctor and my hepatologist this week and will bring this all up with them both. I would like to see another painkiller substituted for the tramadol and perhaps another sleep aid substituted for the trazadone. I am not sure which way the doctors will want to go but I am tired of feeling this way and need a change.

Normal Life vs. The Brain Fog

The single most difficult aspect of Hepatitis C as a disease and of the treatment for Hep C is the combination of memory loss, concentration loss and cognitive loss known as brain fog. Hep C sufferers consistently comment that it is the most troubling and hard to handle aspect of the disease. Hep C itself has a side effect in many of its victims of varying forms of memory and thinking difficulties and when you combine the effects of the Hep C virus with the side effects of taking interferon you get the syndrome they call interferon brain fog. It affects all aspects of your life to one degree or another.

It goes beyond merely forgetting where your keys are or what the name of a movie you saw in the past is. It extends to trying to remember what you walked into the room to do, what it is you were trying to say a moment ago, what you were going to make absolutely sure you got done today or even what you sat down to write about. Perhaps the most troubling aspect of brain fog is that it can actually make you forget the fact you have brain fog, a classic lose-lose situation.

You forget that you have noticed very particular situations that you made note of in the past with an eye towards either avoiding in the future or not entering in to without a plan to make the situation go as smoothly as possible. You find yourself unable to concentrate even though you know you are in a situation that absolutely requires that you pay attention. You discover that you cannot think through and solve the type of problem that you have been able to handle in the past. It drives you to distraction and, unfortunately, you are already there.

This past week my wife and I went to the Roots of Impressionism exhibition at the DeYoung Museum in San Francisco. In the preparations to go to the show, it completely slipped my mind that since the beginning of my treatment crowd situations make me anxious and irritable. The show was only moderately crowded but shortly after entering the galleries, I realized two things: I was starting to get really jumpy and I had forgotten to bring along my Ativan which does a very good job of calming me down in those situations. By the time we finished our tour of the exhibition I was edgy enough that when some friends we had happened upon at the show suggested going to the café for a chat, I had to decline and head home to calm down.

As an aside, I think that the person who invented the audio tour for art exhibitions should be tarred and feathered. Bad enough in the normal sort of exhibition that you have to navigate around the clumps of people reading the labels and the explanatory posters, but at least their ebbs and flows are predictable. The people walking around with audio headsets on are a nightmare. They stop and start erratically. They make sudden turns and movements and they are completely unaware of the people around them. It is the same sort of behavior as automobile drivers on cell phones and just as much of a pain in the ass.

Returning to our previously scheduled disquisition…

Two days after the jaunt to the museum, a friend who had an extra ticket invited me to a Giants baseball game. I laid out a checklist for the game that included sunscreen and a long sleeve shirt to counteract the extra sensitivity to sunlight caused by interferon; several bottles of water, some fruit, and an extra T-shirt in case the fog came in and dropped the temperature 20 degrees. I forgot entirely that baseball games draw large crowds, especially on beautiful summer afternoons. The mere act of getting through the crowd to get to my, excellent, seat already had me twitching. I had once again forgotten to bring the Ativan that allows me to handle crowds more easily. The only thing that saved the day was that the people immediately on either side of our seats decided not to attend that day and there was enough extra personal space to let me relax. It was a great game, even though the Giants lost, but it could have been a really tough day.

You would think that the dodgy experience I had at the museum only 48 hours earlier would have left an indelible mark, but even that could not penetrate the fog…

Doing The Serotonin Space-Out

The speed rush has finally mellowed. I am no longer jittery with loads of nervous energy. I am now in a mostly calm and definitely spaced-out frame of mind. There is still a bit of jumpy legs and feet that comes on in the evening, but half of an Ativan generally calms that down.

It is difficult to describe the state I find myself in. It feels as though both of my eyes are not focusing together. While I can see clearly when I concentrate on something, those things at the edge of my visual field seemed to be focused at different distances. When I turn my head and move my visual field it has to come to a resting point before everything seems focused. It is as if there is a piece of slightly distorted glass between my eyes and what I am looking at.

This feeling is not disconcerting because my mental state is definitely toward the unconcerned side of the spectrum. I find both the visual and mental effects to be interesting, but ultimately of little matter. I am concerned enough to limit my driving to the minimal I need to do to handle my treatment and occasionally my job. I don’t intend to return to driving as much as I did a few months ago until this all settles down.

There is an additional side effect which is of concern. The fact that it is important to me and yet still does not make me upset or anxious certainly speaks to the power and effect of the antidepressants. Antidepressants in general and Paxil in particular can cause side effects in your sexual functioning. I have noticed a definite and extreme drop in my libido. I don’t much care about sex and indeed have not had an erection in about 5 days. The few times I have achieved an erection and engaged in sexual activity, I have found that it is impossible to have an orgasm. This is most frustrating and that frustration can cause a real impediment to the intimacy that sex brings about between two people. You are much less inclined to want to do it if there is no payoff at the end of the process. The wife of an old friend of mine had the same problem when she was on Prozac. She still liked sex but the complete inability to have an orgasm eventually drove her to swear off all antidepressants.

I am not going to go that far, but I am going to talk to my doctors. I am going in for yet another blood redraw (the 10th time) and will sit down with them and go over the side effects I am experiencing. There are a wide range of antidepressants with a number of mechanisms for achieving their effects, so it is certainly possible to switch from one to another until you find one that works best for you.

It is most important to keep in close touch with you doctors about the effects whatever antidepressant you are taking is having upon you. If they are debilitating or just very difficult to endure, talk about changing drugs. There are a wide range of them. All individuals react differently to the individual drugs. So moving from one to another to find the one that works best for you is standard procedure for these drugs. Do not let your doctors tell you that you have to endure difficult or debilitating or scary side effects. You do not and in fact have the right to get the best treatment for your situation.

So use the calm resolution that you are striving for to stand up to the man if you have to. Insist on your right to the correct drugs. Make sure that you keep communications open so that you and your doctors can finally settle on the treatment modality that is best for you.

Believe me, it’s better than being spacey, impotent, anxiety-ridden or suicidal, really.

Riding Out The Rush

Wow, I have not had this powerful an effect from a chemical compound since my experiments in reality hacking over 25 years ago.

I took my first dose of Paxil before going to sleep on Saturday. I woke up by 6:30 a.m. on Sunday (very early for me to awaken on weekend) and could not get back to sleep. I felt a bit restless so I did some yard work in the morning. In the afternoon my wife and I went for a walk and I noticed that I was becoming increasingly spacey and tired. Back at home, I napped for about an hour and woke up to a splitting headache. Ibuprofen handled that and being a bit tired, I went to bed just past 9:00 p.m.

I woke up at about 6:00 a.m. Monday and I was wired. I felt jittery and full of nervous energy. I would sit down for a bit, then get up and pace around the house. I could sit and read the paper, but as soon as I was done with a story, I would get up and pace. I realized my inability to concentrate for any period of time would make going to work useless, so I called in sick for the day. I called my various health professionals to ask if this was a normal reaction or extreme. Their reply was that it was at the upper edge of normal and if it continued for very long to let them know. The rest of the day was about the same and I took some of the Ativan at night to try to calm down the jitters.

Over the next few days the jittery nervous energy gradually moderated. I was able to go to work for a few hours a day until I got so physically restless and mentally scattered that I had to go home. I found myself compulsively doing little things around the house because I could only read for so long before I had to get up and move around and do something. I took small doses of Ativan during the day to steady myself out and returned to taking trazadone to sleep, which helped a great deal.

On the bright side, since starting on the Paxil, I have not felt nauseous at all. In fact all the muscular tension and nervous energy have actually made me hungry for the first time in weeks. Despite this, I have lost 5 pounds in 4 days since starting the drug.

This is definitely Mr. Toad’s Wild Ride going on in my body. Once again, I feel lucky I did a fair amount of reality hacking in my youth because I have clearly recognized that all the side effects I am going through are definitely drug-induced. I’m not going crazy or having anxiety attacks, I am just experiencing a drug reaction. But for the folks out there who haven’t had much experience with drugs that have a direct effect on their mind, this could be a scary experience.

Which leads me to a last comment. Doctor NB did not spend any time going over the commonly occurring side effects of Paxil or explain how much time they continue on average. This would have been a great help and, again, anyone without drug experience who was not prepped about the side effects could have real problems dealing with them.

So now we get to see how the rest of the ride goes. Stay jittery, steady out, maybe even achieve some chemical balance and generally calm down, stay tuned folks, it may stay bumpy…

Coming In Off The Ledge

We finally had the conversation about antidepressants this week, 21 weeks into the trial.

It came about because I had been noticing that I was feeling an increase in impatience and tension during conversations with people. They were the sorts of conversations you have all the time with co-workers, your partner and your friends. It seems that when I would talk to my wife in the evening about how her day had gone, I could feel myself get tense if she talked for very long at all. The same thing happened with co-workers. I found myself thinking, “all right, I get it, you don’t have to keep going on about it, just leave me alone.” This did not happen all the time, but it was increasing in frequency. Just a note, I was not saying any of this stuff aloud, but I was thinking it, sometimes forcefully.

The study coordinator AVB called me to tell me that they needed to redraw blood because my neutrophil count was so low. They wanted to determine whether to adjust my next interferon dose to a smaller amount. I mentioned that I had been noticing a subtle change in my mental state the past few weeks and told her the nature of it. I told her that when I came in two days to do the blood draw, I would like to talk to someone about whether something needed to be done. She said that I should come in immediately. It took awhile, but I managed to convince her that it wasn’t so serious that I was going to start running people down in my truck or screaming at my wife and coworkers. She finally agreed that it could wait till Friday and we left it at that. Her main concern from years of experience was that these sorts of small changes could quickly escalate. Her example was a patient who suddenly started ramming people with her shopping cart at Costco because they weren’t moving fast enough. I promised I wouldn’t do any shopping before Friday.

When I came in for my appointment, they did the quick blood draws and then AVB quizzed me at length about my mental state. I repeated what I told her on Wednesday and then answered her questions about all my various side effects. She told me that even though I had been telling her that I was getting along okay over the past several weeks, she had been noticing some deterioration in my mood. She said that even though I was a tough guy who was intent on soldiering through the treatment, she had “seen it in my eyes” that I was having an increasingly difficult time. I had to tell her that she was about the only person I could remember who ever used the words tough guy to refer to me. Sure I have a generous helping of Slavic fatalism, midwestern quiet desperation, and general stubbornness, but actual toughness, not so much. Nonetheless, she paged the study doctor NB to come in and go over the situation.

When Doctor NB arrived, we went over the same material and discussion of mental state and symptoms. She concurred with AVB that I might be approaching a tipping point in my mental state. Her solution to the problem was to prescribe the antidepressant Paxil. She also prescribed Ativan as something to take when needed if I felt anxious. She said that Paxil can take 2 weeks or more to take effect and that the Ativan would be something to use as a bridge until the Paxil kicked in.

So now I will be starting antidepressants as soon as I fill the various prescriptions. I am not sure what to think about that or what to expect mentally when I start taking them. I have no real feelings about antidepressants, though they do defeat the concept of Slavic fatalism. My wife took Paxil about 15 years ago and it helped her a great deal. I have also found, through talking with other individuals who have gone through treatment, that I am one of the few people who started treatment without being given antidepressants right at the start of treatment.

When I told my wife that I was going to start taking Paxil, she reminded me that for the first few days she had taken it she felt “rubbery.” While we have no idea what my reaction will be to starting the drug, I am definitely expecting some sort of side effects at the beginning. I guess it’s time to hit the internet and start my research…