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.

Money Saved Is Money Earned

In one of the last posts I did before I lost the energy to continue writing, I talked about the differences in care between a centrally administered health care organization (in my case the Kaiser HMO) and a health insurance model of care. One of the biggest differences is in the way drug prescriptions are handled. While under health insurance, the copayment for commonly prescribed drugs and drugs with generic equivalents was $15 for each prescription. Uncommon drugs or drugs whose patent had not yet run out or there were no generic equivalents available had much higher copayments depending on which supply store or agency you used. In the case of HEP C, the high-copayment drugs needed for treatment were Interferon (Pegasys), Procrit and Neupogen. My copayment for each of these was $100 for a 4 week supply. These drugs had to be ordered many days in advance from an out of state specialty pharmacy that delivered them via express mail. When you added in Ribavirin, the thyroid meds, the Ambien for sleep, Celexa for depression and the Vicodin for the weekly bought of muscle pain, the copayments added up to $375 every 4 weeks. During the 7 months of Standard of Care treatment while covered by health insurance the grand total was roughly $2800 in copayments for the meds.

Under the Kaiser HMO model of care, it is very different both in cost and the ease of getting the necessary meds. Kaiser has all the drugs available through their pharmacy. The is no longer any need for ordering interferon, Ribavirin, Procrit and Neupogen through an out of state mail order pharmacy; a pharmacy that had to send the stuff in an insulated carton with freeze packs and once mistakenly sent the meds to Canada. It can now be picked up at the local Kaiser pharmacy without the necessity for ordering many days in advance to make sure all the necessary approvals are in order. Kaiser also considers a standard order to be larger for some of the drugs than do the health insurance people which means there is more bang for the buck. The copay for the Ribavirin, Celexa, thyroid meds, Ambien and vicodin are still $15 but the prescriptions are for greater numbers of pills each. The interferon, Procrit and Neupogen all have a $25 copayment. In the case of the interferon and Procrit it covers a 4 week supply, for the Neupogen it covers an 8 week supply. Thus a 4 week supply of the necessary meds adds up to about $120. The savings amount to about $1500 for the length of treatment done while at Kaiser. This is not a trivial amount for the folks in my pay grade.

There are a lot of other differences large and small, good and bad, between the two methods of supplying health care and I hope to go into them more in the near future. This difference however, is nothing but good. $1500 saved covers a full month of expenses in my world and that is the same as $1500 earned.

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…