the adventures of me

I went through hell with Sustiva.  I had to switch to Sustiva from Videx when my liver started showing damage.  Then we discovered it was actually Hepatitis B that was ravaging my liver, an infection which went undiagnosed for years, maybe decades, until it went crazy in my own particular version of immune reconstitution syndrome:  I started anti-retrovirals for my HIV and the Hep B was left to run rampant inside my body, meanwhile leaving me with cirrhosis before it was even diagnosed.  But that’s a story for another blog.

I live in Rio part of the year and San Francisco part of the year, and part of the year I spend visiting far-flung family and friends.  It isn’t because I’m rich; it’s because I’m homeless.  Plane tickets are cheaper than rent, not only in San Francisco but in the rest of the country – at least the parts where there are top notch HIV doctors and services.

I was taking Sustiva when I went down to Rio for my first extended trip, and all of a sudden my ADAP coverage expired and I was stuck down here with no medications.  Fortunately, a friend of my ex-boyfriend was connected to a fancy federal HIV/AIDS research institute in Rio, and he was able to get me hooked up there as a patient.  You can get anything done in Brazil with the right connections or the right money.  I mean ANYTHING.  They didn’t care that I was on a tourist visa.

I had started at a dosing of 200 mg three times a day instead of the usual 600 mg at night.  A good friend of mine suggested that dosing as a way to mitigate against side effects.  I didn’t want hallucinogenic dreams and I didn’t want to be psychotic during the day.  These medications have enough horrific – or just problematic or unpleasant – side effects that the more I can avoid, the better.  Some doctors say that the lower, more frequent dosing shouldn’t be done at all, but what they say makes no sense to me from a scientific point of view.  It seems to be more of the “conventional wisdom” as opposed to real wisdom and my doctor, who was very smart and actually knew more about HIV than I did, was cool with it.  So that’s what I did.

The catch was that they don’t have the lower dose pill available in Brazil.  Up shit creek with no meds, I had no choice but to switch to 600 mg per day or to switch to different meds altogether.  I didn’t want to start cycling through other meds yet when the Sustiva was still effective from an anti-HIV point of view, so I went with 600 mg in the morning.  Again, I didn’t want to deal with the side effects at night.  I have enough trouble sleeping as it is.

I spent the next year and a half having daily bouts of nausea, dizziness, lightheadedness, headache, vertigo and general yuckiness about an hour or two after taking the medication.  Sometimes I had to lie down and sleep it off, but sometimes I couldn’t.  Sometimes it passed after a few hours and sometimes it didn’t.  I thought if I stuck it out it would improve, as it would seem to wane for a while, but then it would start up again.  Finally I decided to give Sustiva a try at night.

It felt like my brain forgot how to sleep.  I would fall asleep without much problem, but after 4 – 5 hours I would wake up and spend the next couple of hours trying to sleep, hoping to sleep, and never feeling like my brain shut back down.  It was as if everything in me wanted me to sleep but my brain refused.  It was like it was wired.  I was exhausted mostly every day and never felt rested, and usually couldn’t manage to nap during the day, either.  I tried taking Sustiva with a light snack.  I tried taking it on an empty stomach.  I tried taking it with an anti-depressant that had a sedative side effect, in ever increasing (doctor-approved) doses so that it would knock me out.  That helped, but still it felt like my brain had forgotten how to sleep.

After another year and half, I finally got my new doctor to give 200 mg three times a day a try.  That’s where I am now, and I am not having any of those side effects.  I want to taper down on the anti-depressant, and try going without it.  I already cut my dose by a third, and so far so good.  I have my medications delivered to me from the U.S. when I’m in Brazil, and it can take anywhere from 3 – 6 weeks for the shipment to arrive (that is, if someone from the Brazilian postal service doesn’t decide that the box might contain something valuable that they can steal and/or sell, in which case it doesn’t get here at all).  In an emergency, like I had when I first had to switch to the 600 mg dose, I can get my medications from the facility here in Rio.

The one that I seem to run out of most often, though, is the anti-depressant.  I can’t figure out why that is, but I think it’s because I have given myself some grace period each time I switched medications or doses, so I have ended up with a month’s oversupply for just such situations.  After all, you really never know when you might need extra medications, or when a friend might need them, for that matter.  And the one medication that this fancy federal research (and treatment) institute can’t seem to keep in stock is the anti-depressant I use to help me get some sleep.

Twice in the past I have had to take my prescription to my local pharmacy and pay out-of-pocket for the medications.  Today I had to do the same thing after spending three hours on the bus to get to the institute, find out once again they didn’t have it, and get back home.  You can’t call on the phone to find out whether or not they have it because you can’t trust what they tell you.  Once I was told over the course of a number of weeks and several phone calls that they didn’t have it and didn’t know when they would be getting it, and then a few days later I was there for a medical appointment and learned that in fact they did have it and had had it in stock from the first time I called.  Go figure.  In general, all effective business is done in person here.

I was tempted to taper down further or attempt to go without it until I read about some of the withdrawal symptoms people have suffered who stopped the medication abruptly or tapered down too quickly.  I decided not to risk it.  After paying my bills, buying food for the first week of the month, and helping my boyfriend with one of the smallest of our six or so monthly bills, I am left with about $200 to last me the rest of the month.  Now I have to find some money to spend on a medication that should have arrived from the U.S. by today, and should be consistently available at one of the premier medical facilities in Brazil.