At the San Francisco buyers' club, 205 consecutive HIV-1-positive clients were surveyed monthly by mail from August 15 to December 15, 1995. We collected self-reported data on demographics, medical history, current symptoms, quality of life, and body weight from all clients buying thalidomide. The Student'st-test was used to compare means between monthly and baseline weights and symptom scores.
Sixty-nine (34%) clients returned the baseline questionnaire. Of these, 68 (99%) were male, with a mean age (±SD) equal to 42 ± 7 years. Forty-two (61%) reported taking the drug to reverse wasting, 13 (19%) to treat aphthous ulcers, and the remainder (n = 14) for unknown reasons. Of those reporting at 1 month (n = 50), the mean percent weight gain (MPWG) from baseline was 2.6 ± 0.5% (p < 0.001); at 2 months (n= 26) the MPWG was 3.4% ± 1.1% (p < 0.005); and at 3 months (n= 10), the MPWG was 5.1 ± 2.4% (p < 0.06). Clients who discontinued the drug for any reason reported a decrease in added body weight. Clients reported a significant increase in appetite and quality of life (p < 0.001 and p < 0.002, respectively). In clients who reported at 1 month (n = 50), neuropathy, rash, dry mouth, constipation, and drowsiness did not increase over baseline. The reasons clients stopped taking the drug at 2 months (n = 23) included side effects such as rash, drowsiness, and constipation (n = 7), lack of drug (n= 2), death (n = 2), or unknown (n = 12).
Because of the voluntary nature of this mail survey and the controversial climate regarding the purchase of thalidomide, many clients did not complete or return the surveys. The varying availability of thalidomide at the buyers' club might have also limited participation in the surveys. Additionally, dosage was variable as a result of the availability of the drug and the patient's choice.
Our results must be interpreted with caution because they are biased by the subset of clients reporting. Use of thalidomide, however, in these clients was associated with a significant and persistent increase in body weight which diminished when drug was discontinued. The drug was well tolerated in these responding patients, with improvements in appetite and quality of life.
Acknowledgment: This project was supported by a generous gift from Frederick Kane Marek.
Jeff D. Klausner
Healing Alternatives Foundation; San Francisco, California
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Accession Number: 00042560-199708150-00012