Important note: Information in this article was accurate in 2003. The state of the art may have changed since the publication date. I have a friend who was diagnosed HIV positive almost 11 years ago. This past 3 yrs I believe it progressed to AIDS. He only has one kidney working, he's lost considerable amount of weight, 5' 9" and only weighs 135, he was 145 three weeks ago. He's had several fainting spells and does not seem to be getting any better. His most current medication, which he does not know if he will be able to do, is self-injected T20. I think it is still in trials and research development, and is to be taken twice everyday and he falls asleep after taking this medication. He also gets bruises and lumps from this. He does not eat well because he has no appetite, or he gets diarhhea when he eats.
I guess to bottom line the question, he's pretty much is ready to give up and not take any more meds. Would you please let me know what to expect in the next month, three months or so and also given the stats, what would his life expectancy be? Any advice as to how I can help him with food, vitamins, different medication, different doctor?
Thank you.
I am sorry to hear about the plight of your friend, and I think your assessment that there is not a lot to be optimistic about is correct.
T-20 is currently being offered for patients with t-cells under 100 and a history of multiple drug regimen failures, so I am surmising that all available HIV meds have been tried. The data on T-20 however have shown some remarkable responses in some patients who were as sick and far down the road as your friend. This is especially true if it was started with one other untried drug. Therefore I would encourage you to support his using T-20. This may even mean you learn how to prepare the medication and give the injections if need be. To me that would have far more potential benefit than simply adding vitamins and supplements.
There are also a number of drugs in development. But unfortunately few are available in protocols for compassionate use, ie not tested enough on healthier HIV patients to allow it to be used on end-stage patients. But if T-20 could buy some time for those drugs to become available, then it might be worth hanging on.
Since your friend's doctor got him T-20, I am assuming he is a very experienced doctor. That drug was available to only several hundred doctors who had extensive HIV experience. A second opinion is always worth obtaining, since those of us with very sick patients who are fading are always open to any helpful suggestion or fresh thoughts. No doctor has all the answers.
But science aside, your friend sound like his quality of life is poor. He is so weak he falls asleep or faints. He can't eat and has diarrhea. And these symptoms make a person's life miserable without end, so I think this needs to be discussed with your friend. If you feel close enough and comfortable enough, you ask him if he is thinking about stopping his medications and going on comfort measures only. Many patients are afraid their friends or family or physician are uncomfortable with the discussion, so they never bring it up. Some physicians also have difficulties talking about quitting therapies and going to comfort measures only. So be sure to encourage your friend to open the discussion with his doctor.
Finally, I hate to make predictions, especially when I haven't even seen the patient. But it sounds like your friend's life is probably going to be numbered in months only.
Best of luck.
Daniel H. Bowers, M.D.
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