Treatment FAQ

how mamy people with ppms seek treatment

by Deontae O'Kon Published 2 years ago Updated 1 year ago
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What are the treatment options for primary progressive multiple sclerosis (PPMS)?

Disease-modifying therapies (DMTs) are a core part of MS treatment, but these medications can be less effective in people with PPMS. Trials have shown ocrelizumab and siponimod to be moderately effective in treating PPMS and secondary progressive MS.

Do people with PPMS need assistance with walking?

Some people with PPMS may need assistive devices for walking, such as canes or wheelchairs. The National MS Society estimates that about 25 percent of people with MS need this type of assistance. Still, this doesn’t mean that you should expect disability after being diagnosed with PPMS.

What assistive devices are available for people with PPMS?

Some people with PPMS may need assistive devices for walking, such as canes or wheelchairs. The National MS Society estimates that about 25 percent of people with MS need this type of assistance.

How can I Manage my PPMs on a daily basis?

Maintaining mobility and fitness are as important in people with PPMS as with anyone else. In addition, there are medications which may be used to treat symptoms such as bladder and bowel urgency, erectile problems, spasticity, and pain, if such treatments are needed.

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What percentage of MS patients have PPMS?

Men and women are evenly affected by this type of MS. About 10% of people diagnosed with MS have PPMS.

Is there treatment for primary progressive MS?

Treatment. There is no cure for PPM, but it is not considered fatal. Although the FDA has approved medications for relapsing-remitting forms of the disease, there are currently no approved medications for PPMS. Treatment of PPMS is focused on managing the symptoms and increasing daily functioning.

Is there hope for PPMS?

There's no cure for PPMS, and drug options are limited. Research is still being done to explore drugs other than ocrelizumab that can help control progressive symptoms.

Can you live a normal life with PPMS?

People with PPMS typically experience more difficulty with their overall mobility. They may also require more assistance with everyday activities than those with other forms of MS. PPMS is incurable, but DMTs and lifestyle modifications may help a person live with the disease.

Can PPMS progress slowly?

Because people with PPMS tend to have more spinal cord lesions than brain lesions, problems with walking are very common. In fact, the onset of PPMS is usually characterized by gradually increasing walking problems and fatigue.

How effective is Ocrevus for PPMS?

In the PPMS trial, 70% of OCREVUS-treated patients experienced one or more infections compared to 68% of patients on placebo. OCREVUS increased the risk for upper respiratory tract infections, lower respiratory tract infections, skin infections, and herpes-related infections.

How quickly does PPMS progress?

There are 4 studies that describe progression of disability in PPMS. Minderhoud et al2 observed that 7.4% of 128 patients progressed to an EDSS score of 7.0 within 5 years, 30.6% within 15 years, and 62.2% within 25 years.

What is the prognosis for primary progressive MS?

What is the prognosis for primary progressive multiple sclerosis? As with multiple sclerosis in general, the prognosis varies in PPMS. Most people start to have symptoms at about age 50 or older, or about 10 years later than is typical of relapsing forms of MS.

Does stem cell therapy work for PPMS?

Stem cell treatment The goal of using stem cells to treat PPMS is to promote the immune system to repair damage and reduce inflammation in the central nervous system (CNS).

Can PPMS symptoms come and go?

Some of my symptoms can come and go, but the more prevalent ones always stay. As with any faulty wiring, there can be a short that sometimes connects and sometimes doesn't. That is how it is with my PPMS lesions, as they disrupt the connection between my brain and my spinal cord.

Can progressive MS be reversed?

This is because the treatments stop immune attacks, and so can only help people experiencing active inflammation. They can't repair myelin damage or protect nerves. This means they can't reverse symptoms that are due to progressive nerve loss.

Is PPMS worse than RRMS?

People with RRMS tend to have more brain lesions with more inflammatory cells. Those with PPMS tend to have more spinal cord lesions and fewer inflammatory cells. RRMS affects women two to three times more often than men. PPMS affects men and women equally.

How does PPMS affect your life?

PPMS symptoms can affect a person’s everyday life and ability to complete regular tasks. Problems with mobility are characteristic of PPMS, usually due to spinal cord damage. A person with PPMS may also experience the following symptoms: changes in mood. muscle weakness.

What are the symptoms of PPMS?

A person with PPMS may experience many of the same symptoms as a person with relapsing-remitting MS. A study from 2014 notes these can include: 1 changes in mood 2 muscle weakness 3 numbness 4 fatigue (lack of energy) 5 balance problems 6 vision problems 7 problems with bowel and bladder control 8 sexual dysfunction 9 paralysis

Why do doctors add modifiers to MS?

For this reason, doctors add modifiers to better describe MS progression. The goal is to help a person receive the most effective treatment. Below are these modifiers and their definitions: Active: A brain MRI shows more lesions and wider disease activity.

What is the OCR for PPMS?

One drug appears to slow the progression of PPMS. This is a disease-modifying therapy called ocrelizumab (OCR), or, by its brand name, Ocrevus. In February 2016, the Food and Drug Administration (FDA) granted OCR “Breakthrough Therapy Designation” as a treatment for PPMS.

What are the criteria for progressive MS?

In addition to having progressive symptoms, a person must exhibit at least two of the following criteria: MS-related lesions in the brain that show on an MRI scan. two or more MS-related lesions on the spinal cord. elevated levels of immunoglobulin G antibodies or certain immune proteins in the spinal fluid.

What is progressive MS?

Symptoms do not go into remission then relapse. This is one of several forms that MS can take. Multiple sclerosis (MS) is an autoimmune disease. It causes the immune system, which usually defends the body against infection and disease, ...

What are some examples of therapies?

A range of therapies and strategies can help with managing symptoms and enhancing the quality of life. Examples include: Medications to help relieve symptoms: These can reduce, for example, depression, muscle spasms, and bladder problems.

What is the treatment for PPMS?

Treatment focuses on alleviating symptoms while lowering the possibility of permanent disability. Your doctor should be your first source for treating PPMS. They can offer you management advice as they monitor the progression of the disease.

What are the most common forms of rehabilitation in PPMS?

occupational therapy. cognitive rehabilitation. vocational therapy (for jobs) speech-language pathology. Physical and occupational therapies are the most common forms of rehabilitation in PPMS.

What is PT in PPMS?

Physical therapy (PT) is used as a form of rehabilitation in PPMS. The goals of PT can vary based on the severity of your symptoms. It’s primarily used to: help people with PPMS perform everyday tasks. encourage independence.

What is the National Multiple Sclerosis Society?

The National Multiple Sclerosis Society is another organization that offers updates on innovations in treatment. Unlike the NINDS, the Society is a nonprofit organization. Their mission is to spread awareness about MS while also raising funds to support medical research.

When was the last PPMs review?

Much work is being done to better understand PPMS and to treat people more effectively. Last medically reviewed on March 8, 2019.

How to improve quality of life after a PT?

improve overall quality of life. Your doctor will likely recommend physical therapy soon after your initial diagnosis. Being proactive about this treatment option is important — don’t wait until your symptoms progress. Exercise is an important part of PT.

Is PPMS genetic?

The precise cause of PPMS — and MS overall — is un known. A genetic component is thought to contribute to disease development. Researchers continue to study the role of genes in PPMS.

What is the best treatment for progressive MS?

Ocrelizumab is the first FDA-approved medicine for primary progressive MS. It appears to slow the progression of disability. In terms of making physical function as good as it can be, people with PPMS will be helped by exercise, stretching, physical, and occupational therapy.

How many people are affected by MS?

Multiple sclerosis (MS) is a disorder of the central nervous system that affects about 400,000 people in the United States.

What causes progressive multiple sclerosis?

What causes primary progressive multiple sclerosis? Just as with multiple sclerosis in general, the cause of PPMS is not known. It is thought that the disease occurs in people who are susceptible to it due to some kind of genetic tendency. It is believed by some to be caused by a trigger, perhaps a virus.

Can PPMS cause tremors?

This worse ning usually affected the ability to walk and was less likely to cause visual symptoms or tremor. Generally, thinking, memory, and intellect are relatively spared with PPMS. People who have PPMS may also have bowel, bladder, and/or sexual problems.

What can I do to help with spasms?

For instance, an antidepressant may alleviate depression and anxiety, while muscle relaxers can help with occasional spasms. Some turn to natural remedies in the hopes of finding one that can help treat their symptoms.

How to prevent walking problems?

You can help prevent the onset of walking problems by exercising regularly as part of an active lifestyle . Talk to your doctor about other options to help maintain your independence, such as physical and occupational therapy.

Does working make PPMS worse?

Fact: Working won’t make PPMS worse. It’s a myth that you have to stop working just because you have PPMS. Some symptoms can make working difficult, such as fatigue, cognitive impairment, and walking problems. But most people with PPMS can at least work part time without any significant issues.

Is PPMS fatal?

Fact: PPMS is a progressive disease, but not necessarily fatal. Cognitive and mobility issues, combined with the lack of cure for PPMS, have given way to the myth that this condition is deadly. The fact is that while PPMS progresses over time, it’s rarely fatal.

Is physical disability a risk for MS?

Fact: Disability rates range in PPMS. Physical disability is a risk with PPMS — perhaps more so than other forms of MS. This is due to PPMS causing more lesions on the spine, which can in turn create gait issues. Some people with PPMS may need assistive devices for walking, such as canes or wheelchairs.

Is MS more common in women than men?

Some forms of MS tend to occur more often in women than men — sometimes three times as much. Yet according to the National MS Society, PPMS seems to affect both women and men equally in number.

Is there a cure for PPMS?

Recently, one new drug, Ocrevus (ocrelizumab), has been approved for PPMS. This doesn’t mean that there will never be a cure. In fact, research is ongoing in terms of medications for PPMS, as well as possible cures for all forms of MS.

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