Nov 17, 2002
Please help! I started meds for first time 9 weeks ago on a treatment study. The meds were Sustiva and either Combivir or Trizivir (one is a placebo). The first week I had extreme nausea and upset stomach which subsided somewhat, but never really left and the Sustiva was bothersome--but tolerable. On week 3 I had neutrapenia (level 4) and all my meds were stopped. They decided to restart all meds after 5 days except AZT was to be lowered to 200mg. So they basically broke down the combivir and trizivir and gave me the individual pills to take. The nausea upon restarting this was unbelievable. I couldn't eat--lost 9 pounds and was miserable. Reglan and Compazine didn't work at all. They thought maybe the coating was different now that I was taken the broken down versions. On week 6 they gave me Kytril which is used for chemotherapy patients. That worked wonders. I immediatly could eat again and felt pretty good. I was really happy. After 3 doses of Kytril I didn't need to take it anymore. But then the Sustiva really began to bother me. I had extreme fogginess and would have scary depression/euphoria. I really couldn't handle it and do my work so they switched it somewhat reluctantly to Viramune on week 8. Well, I don't feel foginess or the odd moods. But now after starting the Viramune I feel nauseaus. I went in thinking I was having neutrapenia again because it felt like it but my bloodwork was absolutely normal. I'm stumped. Its been a week and a half now on my viramune/ trizivir or combivir regimen and I'm still nauseaus maybe every other day. Its debilitating. I can't do much of anything except lay down. The Kytril doesn't work anymore it seems. I have no idea what is causing the nausea. They seem to think it is the azt still. I think my study doctors are frustrated with me and hesitant to switch me off the azt. My numbers are doing pretty good. Viral load is down to 250 but not undetectible and my percentages are improving. My numbers when i began this treatment were not too bad after two years of no meds. VL at 20,000 and cd4 at 305. I hope you can help me with some advice--I really do. Thanks so much for this forum.
Response from Dr. Henry
In my experience about 10% of persons have some persistent nausea with AZT. Marinol is also oftne helpful for that. You might consider asking to substitute either abacavir, stavudine, or tenofovir for the AZT. If the study doesn't allow for switches and yet your nausea persists then the study may not be a good fit for you. It is hard to be patient but there likely is a combination out there which you can tolerate--sometimes it is a trial and error process to find it! KH
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