Primary progressive multiple sclerosis (PPMS) treatments can involve ocrelizumab (Ocrevus) or stem cell therapy. Strength training exercises can also help manage symptoms.
Unlike other types of MS, PPMS progresses from the start without acute relapses or remissions. Although the disease usually progresses slowly and may take years to diagnose, it typically leads to problems with walking.
Treatment can help prevent the progression of PPMS symptoms and maintain independence.
Keep reading to learn more about how doctors treat PPMS and what treatments may be available.
Most MS drugs help manage inflammation and reduce the number of relapses. However, PPMS causes significantly less inflammation than other types of MS, and symptoms instead result from nerve degeneration.
Although there might be occasional small degrees of improvement, PPMS doesn’t have remissions.
There are fewer treatment options for PPMS than for other types of MS.
Ocrelizumab
The Food and Drug Administration (FDA) approved Ocrelizumab to treat both PPMS and RRMS.
It’s a monoclonal antibody that destroys certain B cells of the immune system. Research suggests that B cells are partially responsible for damage to the brain and spinal cord tissues of people with MS. The immune system enables this degeneration.
Medical professionals administer ocrelizumab by intravenous (IV) infusion. You get the first two infusions 2 weeks apart and later infusions every 6 months.
Using stem cell therapy to treat PPMS may reset the immune system to repair damage and reduce inflammation in the central nervous system (CNS).
In hematopoietic stem cell transplantation (HSCT), stem cells are collected from a person’s own tissues, like bone marrow or blood, and then reintroduced after their immune system has been suppressed. This is done in a hospital setting and is currently FDA approved.
However, HSCT is not effective for everyone. Researchers currently believe it’s most beneficial for people with aggressive relapsing-remitting MS (RRMS) who have not benefitted from disease-modifying therapies (DMTs).
Stem cell treatment is a major procedure with serious side effects, including serious and life threatening infection. More research and clinical trial outcomes are needed to determine whether the treatment is effective for PPMS.
Several clinical trials for PPMS treatment are currently underway. Clinical trials go through several phases before they receive FDA approval.
Phase I focuses on how safe the drug is and involves a small group of participants.
During phase II, researchers aim to determine how effective the drug is for certain conditions like MS.
Phase III typically includes a larger group of participants.
Researchers also look at other populations, dosages, and drug combinations to find out more about how safe and effective the drug is.
Lipoic acid
A 2-year phase II study is currently evaluating the oral antioxidant lipoic acid. Researchers are studying whether it can preserve mobility and protect the brain more than an inactive placebo in progressive forms of MS.
This study builds on an earlier phase II study that observed and evaluated 51 people with secondary progressive MS (SPMS).
High dose biotin
Biotin is a component of the vitamin B complex and is involved in cell growth and the metabolism of fats and amino acids.
Multiple studies included in the research referenced above looked at whether high dose biotin could improve disability or walking in people with PPMS. However, the studies had mixed results, with some finding no benefits and one finding that some participants experienced more relapses while using biotin.
High doses of biotin may lead to inaccurate lab results.
Masitinib (AB1010)
Masitinib is an oral immunomodulatory drug developed as a possible treatment for PPMS.
The treatment has already shown some promise in a phase II trial. While a phase III study involving people with PPMS or relapse-free SPMS was completed, the results are not yet available.
Ibudilast
Ibudilast inhibits an enzyme called phosphodiesterase. It is used mainly in Asia as an asthma medication. It has also been shown to promote myelin repair and help protect nerve cells from damage.
The FDA awarded Ibudilast fast-track designation, which could speed its future development as a possible treatment for progressive MS.
The results of a phase II trial involving 255 people with progressive MS were published in 2018.
In the study, ibudilast was associated with a slower progression of brain atrophy than a placebo. However, it also led to higher rates of digestive system side effects, headaches, and depression.
Other therapies can help optimize functioning and quality of life despite the effects of the disease.
Occupational therapy
Occupational therapy teaches people the practical skills they need to care for themselves 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 with memory and cognitive problems.
Physical therapy
Physical therapists create specific exercise routines to help people increase their range of motion, preserve mobility, and reduce spasticity and tremors.
Physical therapists can also recommend equipment to help people with PPMS get around better, such as:
- wheelchairs
- walkers
- canes
- scooters
Speech-language pathology (SLP)
Some people with PPMS have difficulty with 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
Exercise routines can help you reduce spasticity and maintain a range of motion. Types of exercise can include:
- yoga
- swimming
- stretching
It’s always a good idea to discuss any new exercise routine with your doctor.
Complementary and alternative (CAM) therapies
CAM therapies are considered nonconventional treatments. Many people incorporate some type of CAM therapy as part of their MS management.
There is very limited research evaluating the safety and effectiveness of CAM in MS. But proponents believe such therapies may help prevent the disease from damaging the nervous system. These therapies may also help maintain a person’s health status so the body will not feel as much of the disease’s effects.
According to one older study, the most promising CAM therapies for MS include:
- a low fat diet
- omega-3 fatty acid supplements
- lipoic acid supplements
- vitamin D supplements
A 2021 research review suggested that massage therapy may also help reduce fatigue in people with MS.
Talk with your doctor before adding CAM to your treatment plan and make sure you continue all prescribed treatments as directed.
Your overall treatment plan typically includes therapies to manage symptoms. You may need a variety of medications, lifestyle changes, and complementary treatments.
Medications
Depending on your symptoms, a doctor may prescribe:
- muscle relaxants
- antidepressants
- medications for bladder dysfunction
- medications to reduce fatigue, such as modafinil (Provigil)
- pain relievers
- sleeping aids to help with insomnia
- medications to help treat erectile dysfunction (ED)
Lifestyle changes
Some lifestyle changes may help manage your symptoms, such as:
- eating a nutritious diet high in vitamins, minerals, and antioxidants
- practicing strength-building exercises to build up muscles and boost energy
- practicing gentle exercise and stretching programs like tai chi and yoga to help with balance, flexibility, and coordination
- getting enough quality sleep on a regular basis
- managing stress with massage, meditation, or acupuncture
- using assistive devices to help improve mobility, stability, and overall quality of life
Rehabilitation
Rehabilitation may help improve and maintain function and reduce fatigue. It may involve:
- physical therapy
- occupational therapy
- cognitive rehabilitation
- speech-language pathology
- vocational rehabilitation
Ask your doctor for a referral to specialists in these areas.
Researchers are still exploring ways to effectively treat PPMS.
The 2017 FDA approval of ocrelizumab for PPMS marked a big step forward. Other emerging treatments, such as anti-inflammatories and biotin, have had mixed results in PPMS so far.
Ibudilast 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.