SEPTEMBER 16, 1994 GAY PEOPLE'S CHRONICLE

COMMUNITY GROUPS

Diagnosis and treatment of PML

by Joe Carroccio

Report from the front:

(The following is a report from "Progressive Multifocal Leukoencephalopathy-Case Studies and Potential Treatments" by Peter and Lisa Bronson.)

Progressive multifocal leukoencephalopathy, or PML, is a brain infection previously believed to be untreatable. Now, it has been found to respond to certain treatment regimens, which we will go over in this article.

PML is a viral infection characterized by lesions that grow and multiply rapidly, destroying the protective covering on the nerve fibers called myelin. It's like stripping the insulation from a wire, causing short circuits. Vision, speech and movement become impaired even in the earliest stages. When this stripping of the nerve fiber coating takes place in areas of the brain that control vital functions, like heartbeat and respiration, gradual deterioration takes

Until recently it was thought that PML was 100 percent fatal 100 percent of the time. It is the belief of the authors of this paper that PML can often be treated successfully-iftreatment is aggressive and timely. There are more and more cases of PML survivors to document these findings. There is not an FDA approved treatment yet for PML, but there are several drugs and drug combinations that seem to have had good results in AIDS-related PML. We'll discuss these later. There have been a handful of reports of improvement of PML symptoms with the administration of AZT or ddl. It is not clear if this was directly related to the drug, or more likely, due to an improved overall immune response. Treatment-There are two lines of treat-

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ment that seems to be emerging. The first is

a compound called ARA-C, the other is a combination of drugs including acyclovir, interferon, heparin, dexamethasone and NAC. Since ARA-C and anyclovir may interfere with each other's effectiveness, some physicians feel they should not be used together. But there are reports of these drugs being used together. In any case, always discuss any new treatment with your primary care provider before proceeding.

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place followed quickly by coma and death.

Until recently this condition was considered rare, affecting about one percent of the AIDS community, usually in the end stages of the disease. However, there is growing evidence that there is actually a far greater number of people with PML but it is frequently misdiagnosed as toxoplasmosis, and that PML is increasingly the initial manifestation of AIDS.

Cause PML is caused by the same class of viruses that cause venereal warts. PML is caused by papovavirus, while venereal warts are caused by human papilloma virus. We all carry the virus that causes PML. But like everything else, if you have a well-functioning immune system it keeps the virus in check. It is when the immune system is severely damaged that PML can cause trouble.

PML is usually diagnosed by brain biopsy. Without the biopsy, PML is often misdiagnosed as toxoplasmosis. However, physicians have recently begun to diagnose PML based solely on symptoms. Although less accurate, it avoids the trauma of a brain biopsy.

Symptoms-The onset of PML is characterized by depression, fatigue, dementia, weakness in the limbs and difficulty with speech, vision and movement. It is not uncommon to experience symptoms on one side of the body. As the disorder affects the left side of the brain the right side of the body is affected and visa versa. Epileptic-like seizures are also common but can be treated with medication.

Prognosis has been considered bleak. Current medical opinion is that PML is fatal, period. According to the Merck manual: "Onset may be gradual or insidious, but the course is relentlessly progressive. The duration from onset of symptoms to death is one to four months." In AIDS-related PML the duration is much shorter, often as little as a few weeks.

ARA-C, also called cytarabine and cytosine arabinoside, is an antiviral. Chemically, it's a nucleoside analogue like AZT. The drug has been in use for decades, and has been used to treat non-AIDS PML with mixed results. However, several articles in medical journals have claimed success in treating AIDS-related PML with ARA-C, especially when it is delivered directly to the spine and brain over a period of weeks. Ther is another recent development worth noting. ARA-C in combination with either camptohecin or topatecan seems to shut -off replication of the virus that causes PML in vitro.

At the 1992 International Conference on AIDS, Dr. Carolyn Britton of Columbia University reported that out of 13 PWAs with PML treated with ARA-C delivered through the spinal cord, the results were eight stabilized or improved patients, four for two years, four for 6 months. The five non-responders had larger lesions and other major neurological deficits, along with brain stem disease. It seems there is a period of several weeks before results are experienced. So there is a bit of a waiting game to see if the treatment is going to work. Sticking with the treatment, even as the symptoms get worse, may be a key.

The renewed interests in these compounds is encouraging and the results look hopeful. However there are some very nasty side effects to the treatment. ARA-C is used in chemotherapy for certain kinds of leukemia, with the same side effects. For patients with weakened immune systems the treatment could be deadly. Then there is the issue of the administra-

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tion. Some researchers feel the most effective course for delivery is a shunt in the skull directly to the brain. Obviously if a patient is gravely ill and has a weakened immune system, major surgery is not going to be a wise choice. However, when one considers this is a rapidly progressive fatal infection, of which there was thought to be no cure, these drastic procedures are justified in this writer's opinion. And let's not forget there is always delivery through injection directly to the spine. The writers of the paper feel that the physicians should weigh the risk against benefit. If ARACis ruled out then combination therapy should be attempted.

Acyclovir Again acyclovir seems to have tremendous potential against PML especially in high oral doses of 2,000 to 4,000 mg a day or when delivered intravenously. There only appears to be two cases of acyclovir being used as a tretment for PML, although with good results. While not being studied for PML directly, much is being learned about how to use acyclovir for PML treatment. It has been shown to be superior in treating certain encephalopathies caused by herpes simplex virus and related infections caused by varicellazoster virus. Long term use of acyclovir is considered safe, but physicians should keep in mind that side effects may mimic symptoms of PML.

Heparin Has been in use as an anticoagulant. It is not an anti-viral, however the theory is that it interrupts the process by which the virus that causes PML passes the blood/ brain barrier. Information provided to the authors of this paper indicate that heparin is at least somewhat effective in halting the progression of PML in about half the people taking it. The most common dose has been 5,000 units, subcutaneously, twice daily.

Interferon--Has been used numerous times for a variety of AIDS ailments, with mostly disappointing results. However there are several promising reports of using it to treat PML. It is a reasonable hypothesis that PML would respond to interferon because interferon is an effective treatment for venereal warts caused by human papilloma virus, which, remember, is a close cousin to the virus that causes PML. NAC is available at area health food stores, and has shown great promise as a treatment for PML in a very few cases. The National Institutes of Health have announced that NAC has been shown to significantly fight the AIDS virus as well. NAC is widely used in Europe as a bronchitis remedy. As stated earlier, there are only a handful of antidotal reports. NAC is believed to increase glutathione levels in HIV infected blood cells and reduce tumor necrosis factor, as well as being quite effective against wasting syndrome. The geneticists that have been studying NAC believe that early intervention with NAC could have significant effects against PML.

Dexamethasone-While there are only a few cases reporting partial success with this drug, there is a reason to believe that it is at least partly effective against PML. It is a synthetic corticoid used in treating lesions. It mimics a natural component of the immune system.

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