While there is no cure for HAM/TSP or US Food and Drug Administration (FDA) approved treatments, there are many strategies available to manage the symptoms.
- Spasticity (muscle stiffness) may be treated with medications, including baclofen or tizanidine.
- Urinary symptoms such as frequency, urgency or nocturia (the need to get up at night to urinate) may be treated with any one of a number of bladder medications including oxybutynin, darifenacin, tamsulosin, terazosin, onabotulintoxinA, and others — which reduce the activity of the bladder muscle. Bladder infections are treated with antibiotics.
- Constipation can be treated by increasing the amount of fiber in the diet and, if needed, by laxatives, suppositories and enemas.
- Pain is treated with medications to reduce nerve pain or with non-steroidal anti-inflammatory medications.
- Corticosteroids are sometimes used to decrease the inflammation of the spinal cord.
HAM/TSP is a progressive neurological disorder that is rarely fatal. Most people live for decades after the diagnosis. Complications of the disease — such as severe urinary tract infections and/or pressure sores on the skin — can lead to a poorer prognosis. Adequate bladder management, good skin care and rehabilitation strategies (including physical and occupational therapy) can improve a person's prognosis.
The course of the disease is variable but most change occurs during the first couple of years following the appearance of the first symptoms. After this, the condition is more stable and worsens more slowly. Some individuals have mild disability that does not interfere greatly with their lives. Up to half of all people with HAM/TSP may eventually need to use a wheelchair after many years with the disease.
Reviewed by Elias Sotirchos, MD November 2019