Primary progressive multiple sclerosis (PPMS) is a form of MS. It involves less inflammation, but more nerve damage than the relapsing-remitting form of MS (RRMS).
Treatments for PPMS fall into two broad categories. There are medications that control the disease process, and treatments that help control your symptoms.
Treating PPMS tends to be more difficult than treating the relapsing type. There’s only one medication specifically approved for treating PPMS. A large part of your treatment plan will involve symptom management and rehabilitation.
Here’s a closer look at your options for treating the progressive form of MS.
Only one medication is currently approved by the Food and Drug Administration (FDA) to treat PPMS. Ocrelizumab (Ocrevus) is a humanized monoclonal antibody (mAb). It targets a type of white blood cell called CD20-positive B lymphocytes. These blood cells are thought to cause the inflammation that damages nerves in MS. Ocrevus reduces the activity of these cells, which reduces inflammation and nerve damage.
Ocrevus is an intravenous infusion. After the first dose, another dose is given two weeks later. After that, you only need an infusion of Ocrevus every six months.
Common side effects include respiratory tract infections, infusion site reactions, and skin infections.
Researchers looked at the effectiveness of Ocrevus for PPMS in a clinical trial involving 732 participants with PPMS. In the study, the time to onset of disability progression was significantly longer for patients who received Ocrevus compared to those who received a placebo.
Roughly 15 percent of people with MS have PPMS. People with RRMS tend to have periods of flare-ups and remission. Those with PPMS are always in a steady phase of deterioration without clear attacks or remission periods.
Compared to RRMS, PPMS involves far less inflammation and a slower loss of nerve fibers. People with PPMS also tend to have fewer brain lesions than people with RRMS.
So, disease-modifying medications that are currently available aren’t as effective at slowing the neural damage that occurs in PPMS.
People with PPMS tend to have more problems with walking and may also need more help with their daily activities.
Common MS symptoms you may experience include:
- cognitive impairment
- urinary problems
A big part of your overall treatment plan will be to manage your symptoms. You may need a variety of medications, lifestyle changes, and complementary treatments.
Depending on your symptoms, a doctor may prescribe:
- muscle relaxants
- medications for bladder dysfunction
- medications to reduce fatigue, such as modafinil (Provigil)
- pain medications
- sleeping aids to help with insomnia
- medications to help treat erectile dysfunction
These lifestyle changes could make your symptoms more manageable:
- Eat a healthy diet rich in vitamins, minerals, and antioxidants.
- Perform strength-building exercises to build up muscles and boost energy.
- Try gentle exercise and stretching programs like tai chi and yoga to help with balance, flexibility, and coordination.
- Maintain a proper sleep routine.
- Manage stress with massage, meditation, or acupuncture.
- Use assistive devices to improve quality of life.
The goal of rehabilitation is to improve and maintain function and reduce fatigue. This may include:
- physical therapy
- occupational therapy
- cognitive rehabilitation
- speech-language pathology
- vocational rehabilitation
Ask your doctor for a referral to these specialists.
Complementary and alternative (CAM) therapies
CAM therapies are considered non-conventional 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. According to one study, the most promising CAM therapies for MS include:
- a low-fat diet
- omega-3 fatty acid supplements
- lipoic acid supplements
- vitamin D supplements
Talk to your doctor before adding CAM to your treatment plan, and make sure you continue to adhere to your prescribed treatments.
Several clinical trials are currently underway in PPMS patients. 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.
A two-year phase II study is currently evaluating the oral antioxidant lipoic acid. Researchers are studying if it can preserve mobility and protect the brain more than inactive placebo in progressive forms of MS.
This study builds on an earlier phase II study in 51 people with secondary progressive MS. Researchers found that lipoic acid was able to reduce the rate of brain tissue loss compared to placebo.
Biotin is a component of the vitamin B complex and is involved in cell growth and the metabolism of fats and amino acids.
An observational study is recruiting PPMS patients who are taking a high dose of biotin (300 milligrams daily). Researchers want to see if it’s effective and safe in slowing the progression of disability in people with PPMS. In observational studies, researchers monitor participants without intervening in the process.
Another phase III study is evaluating a high-dose biotin formulation known as MD1003 to see if it’s more effective than placebo. Researchers want to know if it can slow the disability of patients with progressive MS, especially those with gait impairment.
Masitinib is an oral immunomodulatory drug that has been developed as a possible treatment for PPMS.
Ibudilast inhibits an enzyme called phosphodiesterase. It has been shown to promote myelin repair and help protect nerve cells from damage. Ibudilast has been awarded fast track designation by the FDA. This could speed its future development as a possible treatment for progressive MS.
Results of a phase II trial in 255 patients with progressive MS were published in the New England Journal of Medicine. In the study, ibudilast was associated with slower progression of brain atrophy than the placebo. However, it also led to higher rates of gastrointestinal side effects, headache, and depression.
There’s currently no cure for MS and only one long-term medication is approved for slowing progression in people with PPMS. Since PPMS doesn’t involve significant inflammation, immunosuppressant drugs aren’t typically recommended.
Several medications and complementary treatments can help manage the condition. Speak with your doctor about over-the-counter and prescription medications to relieve your symptoms.