What PML Has To Do With MS


PML, JCV, & MS: What These Initials Mean to You

When deciding on medication to treat our disease, Multiple Sclerosis, you may have heard about a possible disease that is possible to get from some is PML.  PML, (Progressive Multifocal Leukoencephalopathy) is a serious brain infection, caused by the activation of the JC Virus.

JC Virus affects 50% of the world’s population usually by the age of 20 and in most cases harmless and asymptomatic. It remains dormant in the kidneys, bone marrow and lymphoid tissue. Activation of JCV are by immunosuppressed individuals such as those who have advanced HIV and/or AIDS, individuals who are on immunosuppressive medications from organ transplants, seen in certain types of cancers such as Hodgkin’s or Lymphoma from taking, and autoimmune diseases such as Multiple Sclerosis, Rheumatoid Arthritis, and SLE (Systemic Lupus Erythematous). Some of these medications listed as possibly activating the JVC virus in MS patients are: Rituximab – (Rituxan), Alemtuzmab – (Lemtrada, Campath), Natalizumab – (Tysabri), and Corticosteroids – (Dexamethasone, Prednisone, etc.) The steroids are listed mainly from chronic use.

PML is a progressive disease of the white matter of the brain in many different locations, (multifocal). The infection targets cells that make up the myelin; or material that insulates nerve cells. It is diagnosed by a MRI in combination of CSF – (cerebral spinal fluid) DNA. It is recognized on the MRI as lesions with irregular borders. Symptoms of PML can include: Clumsiness or uncoordinated, muscle weakness, sensory deficit, cognitive dysfunction, gait difficulties, language impairments, personality disorder, convulsive seizures, and some have said severe headaches. Most symptoms depend on what part of the brain that these lesions are located.

PML is rare but can be fatal in 30-50% of those who get it and usually within a few months to a year of diagnosis. There is no specific treatment for this virus but have found the earlier that it is diagnosed the better. Right now, withdrawal from the medication responsible will help eliminate the symptoms; but are given corticosteroids to help reduce inflammation.  The numbers of HIV cases have dropped due to increased use of antivirals; although no specific antiviral is known to treat PML. Those who do survive PML can have permanent neurological deficits.

Knowing that the JC virus is the key to getting PML, it is safe to say that the need to be tested for this virus is important. Key points to remember: 50% of population will get JCV by age 20; 30-50% of those activated will die from PML. To me the risk is far too high to not be tested.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.