111 posts tagged “multiple sclerosis”

MS and bowel incontinence

Posted September 5th, 2017 by

More than 14,000 members living with MS report bowel problems (difficulty in passing feces including constipation, bowel incontinence [loss of bowel control], and diarrhea). So, what’s the deal with bowel incontinence and MS? What can you do to manage symptoms?

We checked in with Meaghan Zisk, RN MPH, a nurse and Health Data and Patient Safety Clinical Specialist here at PatientsLikeMe, to learn a little bit more.

What’s incontinence?

  • Bowel incontinence is the loss of bowel control leading to accidentally passing solid or liquid stool from the rectum. You may also hear of the term urinary incontinence, which is the loss of bladder control and an involuntary leaking of urine.
  • Nearly 18 million U.S. adults, or about 1 in 12, experience bowel incontinence at some point.
  • Although it can affect any age, it primarily affects older adults.
  • There are some things that can increase the risk of bowel incontinence:
    • Frequent diarrhea
    • Urgency, which means you feel like you don’t have time to get to a toilet to have a bowel movement
    • A disease or injury that damages the nervous system
    • Poor overall health
    • A difficult childbirth with injuries to the muscles or ligaments that help support the rectum

Bowel incontinence and MS:

  • While a little less common than other bowel problems like constipation, many patients living with MS experience bowel incontinence.
    • One study of 221 patients with MS found that 54% had constipation while 29% experienced bowel incontinence.
    • Other studies suggest that as many as 5 out of 10 people with MS experience a bowel accident at some time.
  • Okay, so what’s the connection?
    • Constipation may lead to bowel incontinence because stool backs up in the rectum, which is called an impaction, and loose diarrhea passes around it.
    • People who have mobility problems may have difficulty reaching a toilet quickly when they need to have a bowel movement.
    • People with MS may have trouble feeling when they need to go due to decreased nerve sensation in the rectum.
    • Nerve issues associated with MS may also prevent pelvic floor muscles, which help with having a bowel movement, from relaxing.

What can you do?

  • Drink plenty of fluids (at least 8 glasses of liquid) and get the right amount fiber (usually about 20-35 grams a day) things to maintain regular bowel movements.
  • Plan a bowel routine. It can help with regularity and feeling relaxed and comfortable. A bowel routine involves planning to have a bowel movement at a certain time, usually shortly after a meal or hot beverage. Eventually, the body becomes used to a regular bowel control pattern.
  • Certain medications or treatments could be useful depending on the problem. For example, an antidiarrheal medication might be needed to help slow down the bowels. Fiber supplements can help with providing bulk to the stool, and enemas or suppositories may help if constipation is also a factor.
  • Pelvic floor exercises to strengthen the muscles or biofeedback retraining to increase awareness of sensations in the rectum may help manage bowel incontinence.
  • More tips:
    • Carry a cleanup bag when you go out
    • Locate public restrooms before you need it
    • Wear absorbent pads in your underwear
    • Use fecal deodorants

Talk to your doctor:

  • Bowel incontinence may be a difficult symptom to discuss with your doctor but there are many options for managing incontinence and it is important to have a full assessment to figure out what would work best for you.





Have you experienced bowel incontinence? Does it affect your social life? Share how you cope with the physical and emotional symptoms in the forum.

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Ocrevus: You asked, we answered

Posted August 7th, 2017 by

Last month, we asked the MS community to share their questions about Ocrevus. Now, PatientsLikeMe’s Maria Lowe, Pharm.D., BCPS, sheds more light on what it is, how it works and what patients need to know. Maria’s rundown is meant to give you more context so you can have better conversations with your care team – as always, talk with your physician before starting any type of new treatment.

  1. What is Ocrevus (ocrelizumab)?

Ocrelizumab is a medication that was FDA approved for the treatment of adults with relapsing or primary progressive forms of multiple sclerosis in March, 2017. While the exact way ocrelizumab works isn’t fully understood, researchers believe it works by blocking certain types of B cells that appear to play a role in the autoimmune destruction of nerve cells in patients with MS.

Treatment with ocrelizumab begins with an initial intravenous (IV) infusion over a period of at least 2.5 hours followed by a second infusion two weeks later. After these first two doses, ocrelizumab is administered every six months via an IV infusion over at least 3.5 hours.

  1. Do you really need a washout period before starting ocrelizumab?

A number of MS treatments work by interfering with the body’s immune system in the hope of preventing autoimmune destruction of nerve cells. When more than one these treatments is used at the same time, it may result in additive effects which leaves the immune more suppressed than if those treatments were used alone. This may increase risk of infection. As a result, there are some instances where switching between certain treatments for MS would mean that you should have a “washout period” to help reduce the overlap of two immunosuppressive treatments and reduce the risk of infection.

This is especially important when you’re transitioning from one drug with prolonged immunosuppressive effects to another (such as: Zybrinta (daclizumab), Gilenya (fingolimod),Tysabri (natalizumab), Aubagio (teriflunomide), or Novantrone (mitoxantrone)). A washout period means that you would stop one immunosuppressive treatment for a period of time before starting the next one. While this does help reduce the risk of serious infections, it may increase the risk of a relapse because there’s a period without treatment where your body’s immune system is no longer suppressed.

Whether or not a washout period is needed depends on what treatment was tried previously and current disease status. According to the FDA-approved prescribing information for ocrelizumab, use with other immune-modulating or immunosuppressive therapies could increase the risk of further suppressing the immune system, leaving the body more vulnerable to infections. However, recommendations for a specific washout period or waiting time before switching from another disease-modifying MS treatment to ocrelizumab haven’t been decided. If you’re planning to switch from one MS treatment to another, it’s important to discuss this with your healthcare provider to determine if a washout period would be right for you.

  1. Could rebound relapses occur when starting ocrelizumab?

While a washout period may reduce the risk of immunosuppression, it may result in an MS relapse as a result of being without treatment and possibly as a result of a rebound overreaction of the body’s immune system. Research indicates that rebound relapses might be more common after stopping natalizumab and fingolimod when compared to other available disease modifying treatments for MS. Some data suggests that shorter (8-12 week) washout periods after stopping natalizumab treatment might be better than longer (16 weeks) ones when it comes to preventing rebound relapses.

So far, clinical trials have found that ocrelizumab is effective in reducing relapses and slowing the worsening of MS. However, there isn’t any data available about the risk of rebound relapses after stopping ocrelizumab. The approved prescribing information for ocrelizumab doesn’t describe a specific washout period requirement prior to starting treatment. If you’re considering switching to this treatment it’s crucial to consult with your healthcare provider to determine if such a transition would be beneficial to you and if so, how such a transition might work for you. 

  1. What are the most common side effects for ocrelizumab?

The most common adverse reactions observed in the three clinical trials used to support FDA approval of ocrelizumab include upper respiratory tract infections and infusion reactions. Patients with primary progressive MS (PPMS) also experienced skin reactions and lower respiratory tract infections. Other side effects that patients experienced with lesser frequency include:

  • Depression
  • Back pain
  • Pain in extremities
  • Skin reactions
  • Cough
  • Diarrhea
  • Swelling in the limbs

It’s important to note that ocrelizumab is associated with a handful of warnings regarding its use. These warnings are in the FDA-approved prescribing information and summarize specific adverse effects that might be important to consider when making choices about starting treatment.

Ocrelizumab was approved with 3 different warnings:

  • Infusion reactions: Reactions to infusions might include symptoms like: itching, low blood pressure, difficulty breathing, or fever. Reactions may happen up to 24 hours following the administration of ocrelizumab. In order to help minimize the risk of reactions, patients should receive certain medications prior to their ocrelizumab infusions. These may include a steroid, an antihistamine, and an antipyretic (like acetaminophen) to help prevent infusion reactions. In addition, all patients receiving ocrelizumab infusions need to be monitored for at least an hour after they have completed their infusion to detect if such a reaction may be happening. If you’re receiving treatment with ocrelizumab and you experience any of these symptoms, be sure to let your healthcare provider know right away.
  • Infections: Because ocrelizumab affects your immune system, it may increase the risk of developing infections. The most common infections observed in the clinical trials of ocrelizumab include respiratory tract infections and herpes infections (such as cold sores, herpes zoster [also known as shingles] and genital herpes). Ocrelizumab shouldn’t be administered if you have an active infection. It’s important to tell your healthcare provider if you have any signs or symptoms of infection at any point during your treatment.
  • Increased risk of malignancy: Treatment with ocrelizumab may be associated with an increased risk of certain types of cancer, including breast cancer. It’s important to discuss your individual risk factors with your healthcare provider before deciding if starting ocrelizumab is a good choice for you.

As with all new drugs, we’ll continue to learn more about its side effects as it becomes more widely used.

  1. Is it safe to take acyclovir or Zostavax while using ocrelizumab?

There are no known drug interactions between acyclovir and ocrelizumab. If you’re prone to herpes outbreaks or if you’re concerned about the potential increased risk of herpes infections, be sure to discuss this with your healthcare provider before deciding if ocrelizumab is right for you and what steps you can take to minimize the risk of these outbreaks.

Zostavax is a vaccine that is used to prevent shingles, also known as zoster or herpes zoster. Shingles occurs as a result of the varicella zoster virus (the same virus that causes chicken pox) becoming reactivated in the body. Zostavax is a live vaccine which means it contains a weakened version of the varicella zoster virus. Because the virus is only weakened and not completely dead, patients with a compromised immune system may develop an active infection after receiving such a vaccine. Since ocrelizumab lowers the body’s immune response, it’s recommended that any live vaccines are administered at least 6 weeks before starting treatment.

  1. What is the role of low-dose naltrexone (LDN) for MS and can it be used with ocrelizumab?

Naltrexone is an opioid antagonist that is FDA-approved to treat drug and alcohol addiction. At significantly lower doses, naltrexone has also been used off-label (meaning outside of its FDA approved indications) to treat a variety of diseases including MS and Parkinson’s disease. Some studies with this treatment have shown that it might be helpful for certain aspects of MS (including improving patient quality of life) but the overall impact on MS progression and symptom control is not conclusively known.

Currently, there is no known drug interaction between ocrelizumab and naltrexone. Have you tried either treatment for your MS? Share your experience with the community by filling out a treatment evaluation.

For more information about ocrelizumab, check out the patient medication guide.







http://www.medscape.com/viewarticle/863241 (You’ll need to make an account)

http://www.medscape.com/viewarticle/846498#vp_1 (You’ll need to make an account)








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