Tuesday, 8:00 a.m.
News arrives that patients are being successfully treated with Crixivan on a twice a day (BID) regimen. I had been taking Crixivan on a three times a day (TID) regimen for almost two years and was nauseatingly tired of the strictness of the doses: 8:00 a.m., 4:00 p.m. and midnight on an empty stomach, no matter how tired, hungry or busy I was. BID sounded really good!
Wednesday, 11:05 a.m.
Talked to Dr. Gersoff, an infectious disease specialist, about the possibility of changing to BID. He told me the data was still premature and I would probably be better off not messing with a combination that was working, (keeping my viral load undetectable).
Wednesday, 11:45 a.m.
Asked a second opinion from another AIDS specialist. Dr. Steve Hosea. He thought that precisely because the combination was working for me, I could afford to venture a change in the dosage. Score: BID I, TID 1. I needed a third opinion, although I felt that mine was the only one that really counted!
Thursday, 1:12 p.m.
Visiting Pam Burien, my primary care provider at AHF, I learned that my T-cells were stable and the viral load remained undetectable. Pam also thought that I could try the BID regimen if I was really fed up with TID, and I most certainly was. She advised me to drink a lot of water and watch for any unusual pain. I decided to start the new system the following day.
Friday, 10:00 a.m.
I took my first BID dose of Crixivan. Now, instead of taking two pills three times a day, I would be taking three pills twice a day. Anew, wonderful and exciting life style had just begun (or so I thought as I swallowed the pills).
Friday, 1:08 p.m.
Inebriated with the joy of my small but cherished new found freedom, I almost did not notice the reddish coloration of my urine. "There must be something wrong with the light in this bathroom," I thought to myself, denying the evidence.
Friday, 8:15 p.m.
I turned on the light switch in order to better inspect the reason why urinating had been so painful. There was blood on the paper tissue and the toilet bowl was tainted red. I freaked out. In two hours it would be time for the second Crixivan dose of the day. I know how skipping doses may result in resistance. Would taking the second dose aggravate the bleeding? Had I not drank enough water? What was going on with me? My doctor was nowhere to be found.
Friday, 10:00 p.m.
Drinking water by the gallons, I decided not to take the second dose. The blood in the urine was still visible and I would wait until it cleared up to return to my hated prior TID regimen. I felt doomed and trapped by a successful yet inconvenient medication.
Saturday, 8:00 a.m.
Urine is clear. I took two Crixivan pills and resigned, thinking the ordeal was over.
Tuesday, 1:20 p.m.
Visiting a WIHS (Women Interagency HIV Study) site, I asked, just out of curiosity, if I could look at my urine sample under the microscope. It was sparkling as the light reflected on thousands of floating Crixivan crystals, glistening like fake snow in a glass ball, but I wasn't prepared for what I would see in the microscope. There they were, the Crixivan crystals, clumped together into huge hay stacks (they looked monstrous through the lenses), with protruding sharp edges pointing in all directions. Those sharp edges passing down through the urethra were painfully able to tear the walls of the delicate canal (like razor blades being flushed through a garden hose) and provoke the bleeding I had experienced. Although the color of the urine was clear, the test showed there were still traces of blood. I was scared and amazed that I hadn't gotten sicker.
Tuesday, 10:23 p.m.
Hell broke loose. Although there was no visible blood, massive pain look over the left side of my body, right under the rib cage. I turned to the right and tried to sleep so it would go away. But it didn't. By midnight I knew all too well there would be no sleep for me. The pain had spread to the entire left side of my torso with such violence that all I could think about was cutting it out using a butcher knife. My roommate, Maureen Perry woke up at my cries and was horrified with the guttural shriek I uttered as she touched me. The mere contact of the silk negligee on my skin was painful. I refused her offer to take me to the hospital. Not having medical insurance, I would only go in case of a near death experience. Supporting me on my decision, Maureen prepared me a warm bath and watched me as I squirmed to the tub. I laid there for 90 minutes, drinking water and howling in pain. Finally, the pain became bearable. Exhausted, I went back to bed without ever taking my last dose of Crixivan. "Screw it," I vowed never to take it again.
Wednesday, 9:11 a.m.
Maureen drove me to the I.D. clinic, where Hosea, Gersoff, case managers and social workers were waiting for me. They gawked as I passed through the corridor, bent like a ninety year old lady, colorless and visibly shaken by pain. "Quit taking Crixivan immediately," was Hosea's advice. I had already quit. "And let's flush whatever is left of it in your kidneys with some I.V.," he added. I had just been as close to a kidney collapse as one could ever get without actually having one. I was supposedly one of the lucky ones. I did not feel lucky.
After four pounds of fluid administered intravenously and two days of resting in bed, I felt better, good enough to re-start HIV medication. This time I would switch to Viracept and Viramune in place of the Crixivan, keeping the Epivir and Zerit I was already taking.
I had not developed resistance to Crixivan, therefore the odds of being successful with the new combination were good (this later turned out to be true). Viracept was an option that pleased me, not only because it must be taken with food, but most importantly to me, it does not require rigid timing of the TID doses. I could take one dose with breakfast, one with lunch and the third one with dinner, even if they were not exactly eight hours apart. That alone gave me the freedom I was hoping for.
When I decided to change the dosage of Crixivan, I did not know that the extra load of pills, squeezed into a single dose, could overburden my kidneys with the incredible hay-stack-like crystals. That possibility had not been mentioned in the data from the studies on which I based my decision. I thought I was making an informed decision. I had read all the studies and consulted three different specialists. Still, I was not provided with all the facts. Now, other patients have been asking me what I think about another drug, Viracept, after new studies' findings that it can also be taken BID. "I don't think so," that's all I have to say about that!
This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.