Primary progressive multiple sclerosis (PPMS) is one of the four types of multiple sclerosis (MS).
According to the National Multiple Sclerosis Society, about 15 percent of people with MS receive a diagnosis of PPMS.
Unlike other types of MS, PPMS progresses from the start without acute relapses or remissions. Although the disease progresses slowly and may take years to diagnose, it typically leads to problems with walking.
There’s no known cause of MS. However, many treatments can help with the progression of PPMS symptoms.
Prior to 1993, there were no effective treatments for MS. Today, there are 14 treatments approved by the Food and Drug Administration (FDA).
Most existing MS drugs are designed to lower inflammation and reduce the number of relapses.
However, PPMS causes significantly less inflammation than relapsing-remitting multiple sclerosis (RRMS), the most common type of MS. In addition, although there might be small periods of improvement, PPMS doesn’t have remissions.
Clinical trials for PPMS are also extremely time-consuming and expensive to conduct. This is because PPMS symptoms develop gradually and become more severe with time. PPMS is also rare compared to RRMS.
Because PPMS progresses differently in every person who has it, it’s difficult for researchers to evaluate the effectiveness of a drug on the course of the disease. However, as of 2017, one PPMS drug has received FDA approval.
Ocrelizumab (Ocrevus) is FDA-approved to treat both PPMS and RRMS.
It’s a monoclonal antibody that destroys certain B cells of the immune system. B cells are partially responsible for damage to the brain and spinal cord tissues of people with MS. This damage is enabled by the immune system itself.
This medication is administered by intravenous infusion. The first two infusions are administered two weeks apart. Later infusions are administered every six months.
In France, participants with both PPMS and secondary progressive MS (SPMS) in a small open-label trial for high-dose biotin showed improvement in visual impairment related to optic nerve injury and other MS symptoms, such as motor function and fatigue. Doses ranged from 100 to 300 milligrams per day for 2 to 36 months.
However, a Swedish study found that high-dose biotin nearly tripled the relapse rate in participants with PPMS. The FDA has also warned that high doses of biotin may lead to inaccurate lab results for people with certain conditions, including MS.
Some medications may help you manage MS symptoms such as spasticity, bladder and bowel problems, and sexual dysfunction. These medications include:
Intermittent steroids are normally used to control inflammation-related relapses during relapsing types of MS.
They may be given during the SPMS disease course. They’ve been given to people with PPMS with limited results.
Many doctors won’t offer steroids to those with progressive forms of MS because there’s very little research pointing to their benefit. Steroids can cause serious side effects, such as:
- high blood pressure
- high blood sugar
- weight gain
Methotrexate (Trexall) was developed as a chemotherapy drug and for the treatment of autoimmune diseases.
At the moment, methotrexate isn’t FDA-approved for PPMS.
Many other treatments, aside from medications, can lead to improved symptoms. Occupational therapy teaches people the skills they need to improve their quality of life, both at home and at work.
Occupational therapists show people how to preserve their energy, since PPMS typically causes extreme fatigue. They also help people adjust their daily activities and chores.
Therapists may suggest ways to improve or renovate homes and workplaces to make them more accessible to people with disabilities. They may also assist in treating memory and cognitive problems.
Physical therapists work to create specific exercise routines to help people increase their range of motion, preserve their mobility, and reduce spasticity and tremors.
Physical therapists can recommend equipment to help people with PPMS get around better, such as:
Some people with PPMS have problems with their language, speech, or swallowing. Pathologists can teach people how to:
- prepare food that’s easy to swallow
- eat safely
- use feeding tubes properly
They may also recommend useful telephone aids and speech amplifiers to make communicating easier.
Exercise routines can help you reduce spasticity and maintain a range of motion. You can try yoga, swimming, stretching, and other acceptable forms of exercise.
Of course, it’s always a good idea to discuss any new exercise routine with your doctor.
PPMS isn’t a common type of MS, but multiple researchers are still exploring ways to treat the condition.
The 2017 approval of ocrelizumab marked a big step forward. Other emerging treatments, such as steroids and biotin, have garnered more mixed results.
Ibudilast, an asthma medication used mainly in Asia, has also been studied for its effects on PPMS and SPMS. Recent results from a phase II trial show that it causes some side effects, including depression. However, it was also associated with a lower rate of brain atrophy.
Speak with your doctor if you want the most up-to-date information on the best ways to manage your PPMS.