Any members in the 1996 Merck Crixivan trials?

[jm1953]

I've been seeing posts about some members having side effects from having been on Crixivan.  I was involved in the mid 90's Merck Crixivan study.  I believe it had four arms. Placebo/Placebo, AZT/Placebo, Crixivan/Placebo, and Crixivan/AZT.  I soon learned after taking it a couple of days I was on the Crixivan/AZT just by the symptoms, not that they could tell us.  I remember having to take like it seemed 16 piills a day or something, two hours before a meal, or three hours after.  Very hard to adhere to when you are working a retail management job, all different hours. 

At any rate, my bilirubin became very high and Merck kept reducing my dosage to where I actually was resistant to Crixivan when it became open label.  But I don't think my kidney's ever really recovered from that ordeal.  Fortunately no kidney stones, but probably would have developed them if Merck hadn't reduced my dose so much.

Just wondering if anyone else participated in this study, and are having residual kidney problems due to the Crixivan?  Infact, is anyone on Crixivan anymore?

Just wanted to throw this out there.  This might belong in the long term survivor thread since it has been so many years ago.

Thanks,

Jeff

[aztecan]

Hey Jeff,

While I wasn't in the clinical trials, I did start Crixivan in 96.

I first started with Saquinavir, AZT and 3TC in March 1996, but had such horrid side effects from the Saquinavir (prior to its two reformulations), the doc switched me after three months to Crixivan.

I took Crixivan, AZT and 3TC for 11 years. It was 17 pills a day, taken in three doses, and had to be taken on an empty stomach, no food two hours before or one hour after. The Epivir was only twice a day.

I can still remember the schedule. I took the meds at 7 a.m., 3 p.m. and 11 p.m. I seem to remember someone once telling me there was only a 20-minute window with Crix, so I was absolutely anal about taking it on time no matter what. I wore an alarm watch to remind me of the afternoon dose and put an alarm clock in the living room to wake me up should I doze off prior to the 11 p.m. dose.

I also remember the eating schedule. No food from 5 to 8 a.m., from 1 to 4 p.m. and 9 p.m. to midnight. I also remember how I could tell how long it had been since I took my meds.

At precisely 45 minutes after taking the meds, a wave of nausea would wash over me. It usually didn't involve vomiting, but there were moments when I thought I might. It was like clockwork and it didn't change for 11 years.

The nausea would go away as soon as I ate something, even just a cracker would help. I think it was the AZT, since I took all the meds on an empty stomach.

I did end up with the kidney problems caused by Crix, including a bout with passing "gravel" through my kidneys in the late 90s. The gravel, I was told, was a precursor to full-fledged kidney stones, a hallmark of taking Crix. Once I passed the gravel the first time, I held the stones at bay by consuming at least 64 ounces of water each day, on top of whatever else I drank.

I knew where every public restroom in town was.


Lordy, what memories.

Crix isn't used as much these days, and when it is, it is usually boosted with 100 mgs of Norvir, so no more worrying about fasting.

But, you know it did help me stay slim!

HUGS,

Mark