Frequently Asked Questions

My symptoms are new or worse; is this exacerbation?

It can be difficult to know when new neurologic symptoms represent a MS exacerbation or flare or when they represent a false or pseudo-exacerbation. A true exacerbation results from a new MS lesion in the brain or spinal cord. MS exacerbations or flares typically develop over hours to days rather than seconds. The new symptoms usually last for at least 24 hours. The area where the new lesion is located in the nervous system will determine the type of symptoms the lesion causes. A pseudo-exacerbation is a worsening of symptoms in the setting of an external complicating factor that is not related to an actual new lesion from your MS.

Some potential causes include: Infections (viral or bacterial), elevated core body temperature (related to exercise activity or the environment), new medications, physical overuse or over-activity, and stress. Usually we can help to determine whether a new problem represents a new exacerbation or pseudo-exacerbation. In general new exacerbations cause symptoms you have not previously experienced. True exacerbation symptoms tend to involve more isolated parts of the body. Pseudo-exacerbation symptoms often involve many different systems and body parts. It can be difficult even for us to determine the exact nature of symptoms however the list below may be helpful.

Common True Exacerbation Symptoms

  • Loss or blurred vision in 1 eye
  • Double or jumpy vision
  • Numbness or tingling (in one limb, both legs or half the body)
  • Weakness (in one limb, both legs or half the body)
  • Balance difficulties
  • Tremors
  • Abdominal or chest tightness (“the MS hug”)
  • Electric shock-like sensation when the neck is flexed (Lhermitte’s)

More Common Pseudoexacerbation Symptoms

  • Generalized weakness
  • Cognition or memory change
  • Fatigue
  • Bladder changes (frequency, urgency, slow flow, double voiding, or hesitancy)
  • Bowel changes (constipation, diarrhea)

If any of these symptoms occur you should notify us. Evaluation of both exacerbations and pseudo-exacerbation is important. While steroids may speed recovery from true exacerbations they are not usually used to treat pseudo-exacerbations. Removing the cause of the pseudo-exacerbation will usually result in the resolution of your symptoms within a day or so.

When you suspect an exacerbation or pseudo-exacerbation is occurring, we ask that you review your recent health with attention to infections, new medications and other recent activity or changes. Please let us know about any changes in your urinary bladder control or the clarity or odor of your urine. Also let us know about even mild respiratory or gastrointestinal infections. We ask that you take your temperature before contacting us.

We will often ask that you have your urine checked for infection and in some cases may ask that you have a chest x-ray or visit with your family doctor to look for other issues. Blood levels may be checked if you are on a medication which may aggravate MS symptoms. If you are on an interferon beta type medication (Betaseron, Avonex, Rebif, Extavia) or natalizumab (Tysabri) we may ask that you have a blood test for antibodies that interfere with the medications effectiveness. If you are on natalizumab (Tysabri) any worsening should be immediately communicated to our nurses as it could represent the brain infection PML.

We will want to know if you have had any recent MRI scans and if so when and where. We will often request an MRI scan of the appropriate region to evaluate for true exacerbations. The type of symptoms that you are experiencing will determine what type of MRI scan we will order.

True exacerbations indicate that your MS is not currently under complete control. If you're not on a disease modifying therapy for your MS, your neurologist may discuss starting one with you. If you are on disease modifying medication for your MS please honestly report if you've had difficulty taking it as prescribed for any reason (side effects, cost, other). Your neurologist will discuss whether this exacerbation and associated changes on your examination and MRI scan indicate a need to reconsider your long-term MS therapy.

Not all exacerbations require treatment with corticosteroids such as methylprednisolone (Solu-Medrol) or ACTH. These agents may speed recovery from exacerbations but do not necessarily improve the amount of recovery. Your neurologist will decide if these agents are necessary. Our MS center team will assist you in arranging your treatment if necessary. Please remind us if you have had any difficulty with these medications in the past (significant side effects) or have other medical conditions such as diabetes that may require special care. Please see our information page on Solu-Medrol elsewhere in this website for a review of potential side effects.

I need an insurance authorization for my medication.

There are hundreds of different medications on the market, with more becoming available every day. One way the insurance company manages costs of plans is to have a specified list of medications that they will provide for those they insure. If you need a prescription drug that currently is not covered by your prescription drug benefit, your physician or an authorized member of his or her staff may obtain coverage approval by requesting prior authorization from your insurance. Prior authorization ensures medication safety and cost containment. 

What is prior authorization?

Prior authorization is an approval processes required by the insurance company to allow you to receive the medication your health care provider prescribed through the pharmacy or medical coverage section of your insurance. If you don’t get the prior authorization, a medication may cost you more, or it may not be covered at all.

Which medication needs prior authorization?

  •     Drugs that have dangerous side effects or can be harmful when combined with other drugs
  •     Drugs that should be used only for certain health conditions
  •     Drugs that are often misused or abused
  •     Drugs that are prescribed when less expensive drugs might work better

Most of the medications used to treat the multiple sclerosis require prior authorization. The medications that our office authorizes includes: Ampyra, Nuvigil , Provigil, Adderall, Avonex, Betaseron, Copaxone,  Extavia, Gilenya, Lemtrada, Plegridy, Tysabri, Rebif, Rituxun, and  IVIG.  

How do I find out if my medication needs prior authorization?

The benefits section of your insurance may provide you with the specific lists of which medications are on their preferred formulary list.Your pharmacy may tell you prior authorization is required when you attempt to have the medication filled. We try to know each patients formulary but they are ever changing and we deal with so many insurance companies that it can be very difficult to know each medication and each formulary. 

How does the authorization process work?

For a prior authorization request to be considered for approval by the insurance company, a health care provider would need to provide some clinical information about you such as your diagnosis, your current condition and medical reason why the preferred alternative(s) would not be appropriate for you. We submit it electronically or we fax it to your insurance company.  

How long does the review process take?

The approval process is different for each insurance company. It may take 48 hours or it may take up to 28 days to receive a response. Once we have a reply from the insurance company, we will send you a message through MY UPMC or by US Mail. The letter will contain what medication is authorized as well as how long the authorization is in effect. 

How long is the authorization in effect? 

Depending on the insurance plan and the medication, the authorization period may be 1, 3,  6 or 12 months. Few insurances provide a lifetime authorization.  

How can I help myself in this process?

You can contact us (via MY UPMC or phone 412-692-4914) one month before your reauthorization is needed. This allows us time to gather and send the information for your insurance company. Please provide us with the insurance information, the medication requiring an authorization and your current medication dose.

What if my insurance denies the medication request?

If the request is denied by your insurance company, one of two things can occur. Your physician can appeal the decision and provide more data as to why this is the best choice of medication for you. Otherwise the physician or physician assistant may substitute another medication for you. If your physician chooses to appeal, this process may take weeks to complete.  

What is a quantity exception request?

Some requests are denied due to the quantity of the medication ordered (ie number of tablets capsules, infusions, patches, etc). Some insurance companies have quantity restrictions. The process to request additional quantities is similar to the authorization process. If your insurance denies the additional quantities, your option is to purchase the additional medication out of pocket or speak to your provider about other alternative doses of the original medication or an alternative medication.   

We kindly ask that you please give us a minimum of 28 days to complete your authorization due to the volume of authorizations we process and the number of patients that we serve. Any time you have an insurance change, your medication will require a new authorization.  

Please make sure your insurance information is current in our system. With any change please call and report it to 412-692-4920 (press number 1). 

I need a medication refill sent to my pharmacy.

You may request a refill via MY UPMC (Preferred)

Call 412-692-4914 and provide us with the following information in a refill message:

Your Name (spell first and last name)
Your Phone Number (in case we need to contact you)
Date of Birth
Prescription Name
Strength
Number of times you are taking the medication per day
Pharmacy name and phone number

WE REQUIRE A MINIMUM OF 72 HOURS TO REFILL MOST MEDICATIONS

I need an insurance authorization for my MRI.

Many insurance companies have an approval process when tests such as MRIs, MRAs and CT scans are prescribed by your health care provider. It is important for you know if your insurance company must first approve the test so that the cost will be covered by your insurance company. You may still have a co-payment for the MRI even if your insurance company does approve the test.

When a radiology study such as an MRI, MRA or CT scan is ordered, we have a central authorization support team outside of our department who will inform your insurance company of the requested study and obtain the authorization (approval) number for the test. Once the test has been authorized,(each test requires its own authorization number)  you will be notified by mail, phone or through MyUPMC. Most radiology centers will require that you provide the authorization number before the test can be scheduled. The approval process may take at least 10-14 days and may require a telephone conversation between your insurance company and your physician before it is approved.

If your scan is to be completed in 6-12 months prior to your next scheduled appointment, please let us know at least 30 days in advance of your test so that we can obtain the necessary authorization. Each insurance company may authorize the test for a different length of time. For example, UPMC health plan authorizes tests for 6 months, but Highmark Blue Cross of Western PA only authorizes for 60 days. Other providers provide a 30 day approval. If you do not complete your testing prior to the expiration date of the authorization, we will have to contact the insurance company for a new authorization number.

If you have not received your authorization number from our office, please contact us via phone 412-692-4914 or through MyUPMC to request or check on the authorization prior to completing your test. If you complete the exam without authorization, you may be responsible for the cost of the exam.

Scheduling Tests – As a courtesy we make all attempts to schedule an appointment for any prescribed testing before you leave our office. If for any reason you cannot keep the scheduled testing appointment we ask that you cancel and reschedule it when it is convenient for you. If we were unable to schedule your test as preauthorization is required, we ask that you schedule for your exam once you receive a notice of authorization. Below is a list of numbers for testing centers that are frequently ordered by our physicians. 

How do I sign up for MyUPMC?

We have found it helpful to communicate with our patients using MyUPMC, a very useful tool and a new and easy way to connect to your healthcare. You can sign up during your next office visit, or you can sign up directly online. View the MyUPMC website, where you can set up your new online account. For assistance, please contact the MyUPMC Support Line via email or call 1-866-884-8579, option 2. More information about MyUPMC and how to communicate with our office can be found here.

How do I find my test results?

There are seven diagnostic tests that potential or current MS patients undergo for diagnosis or treatment. Whenever possible, and if your insurance network allows, we ask that your testing be performed at one of the following locations, so you can be sure we will have quick access to review your results:

  • A UPMC hospital
  • UPMC community outpatient facility
  • Quest Diagnostics location

Use of other centers for testing creates delays in both receipt and review of your results by physicians, as these results would not be easily accessible in your electronic medical record or through your MyUPMC account.

Why do I need a primary care physician (PCP)?

Neurological care is focused on limiting the progression of multiple sclerosis. As there are many symptoms that can occur with MS, our practice can provide guidance and specialty care related to some of these symptoms you may experience or we can refer you to providers who are skilled in managing those symptoms that have occurred as a result of MS.

Unfair as it seems, MS does not keep other disorders away. Like the general population, you are subject to medical problems, which means that regular visits with a primary care physician and age-appropriate screening tests are just as important for you and your MS condition as they are for everyone else. Most patients with chronic illnesses do not have a single, predominant condition. The five most prevalent disorders occurring alongside MS are depression, anxiety, high blood pressure, high cholesterol, and chronic lung disease. We require that each patient in our practice have a primary care physician who should be seen on a yearly basis.  As total health providers, primary care physicians handle annual physicals, perform routine screenings, give vaccinations, manage chronic issues such as high blood pressure, and offer guidance on diet and exercise programs. They take a comprehensive look at your health and work with you to mitigate issues as you age. Cardiovascular risk factors such as hypertension, heart disease, obesity, and type 1 diabetes are associated with a greater chance of developing new MS lesions.

Routine visits with your primary care provider not only promote your overall health, but they also build your health history. Knowledge of your health history, as well as your family health history, is imperative for prevention of diseases and also helps your doctor catch early symptoms of serious conditions. Moreover, it is essential should an emergency arise. Primary care providers can more easily detect patterns in your health and recommend lifestyle changes to prevent future complications that may require expensive specialty care. This can also help to limit progression of MS. We can communicate information about you after your visits in our clinic so they are able to make decisions about your care with current knowledge of your neurologic condition.

A geriatrician is a medical doctor who is specially trained to meet the unique healthcare needs of older adults. Illnesses, diseases, and medications may affect older people differently than younger adults, and older patients often have multiple health problems and take multiple medications. Generally, geriatricians are primary care physicians who are board-certified in either family medicine or internal medicine and have completed the additional training necessary to become board certified in geriatric medicine. If you are over age 65, and you are looking for a provider who can help you with your medical needs, you may want to consider a geriatrician.

 

How do I have a form completed by your office?

In order for our office staff to complete any medical or insurance form or letter request, we need to inform you of our office procedures for handling such paperwork. Our Neurology Department requires that you complete an Authorization for Release of Protected Health Information form (below) so that we can legally share information regarding your medical condition with the person/ company requesting such information.

A fee will be charged by our office to complete your request. A fee schedule is also enclosed (with release). We charge fees for forms or letters as this work is uncompensated and creates additional work for our staff especially when requested outside of your scheduled appointment. 

We will complete your request upon receipt of payment and completion of all forms. (See form fee and release forms and instructions). Once the forms are completed, we mail the form or letter to the requesting individual or company unless you state otherwise. A copy will be mailed to you for your records.   

If you require this form to be completed sooner that 4 weeks, please schedule an appointment with our physician assistant Ryan Orie PA-C by calling 412-692-4920 and press number 1. 

Utility Shut off notice:

Please let us know via phone call or MY UPMC that you are having a Utility Shut off Notice form faxed to us. Form should be faxed to 412-692-4907. If your utility provider does not use a form and requires that a physician call to delay turning off service please use MY UPMC or call us with the following information: Name, address, name, name the bill is under and account number. We will attempt to call the utility provider within 72 hours of receiving this information.

Jury Duty:

Please mail or fax your form to us at 412-692-4907. We will attempt to complete and return within 72 hours.

Handicapped Placards:

We have forms from the Pennsylvania Department of Transportation that we can complete for you. If you reside outside of the state of PA, please mail the form to us and we will be happy to complete the form should your condition limit your ability to walk. You may request this during an appointment, or in between visits.

Release of Records UPMC is committed to protecting the privacy of your medical information. To safeguard your privacy, you must complete and sign a form before records can be sent. We use an outside vendor who handles our releases. Should you want to request records, our form is available below for you to download. Once we receive an accurately completed Release of Record form we forward it to Healthport. On the form, you must indicate what records are to be released and where they are to be sent. To check the status of your record release you may call 412-648-6057. You may return the release form by mail or fax at 412-692-4907. We are only able to release our records to you (example your progress notes and tests ordered by our physicians on staff in our own department.) We cannot release records we received about you from another provider. Please note there may be a cost involved for you to receive records.

If you are requesting records related to a hospitalization at a UPMC hospital, you will need to request this by phone 412-802-0100 or fax: 412-683-1492.

How to Complete this Form

Please see PDF Release

We will not honor this form unless all required fields are completed. We cannot honor blanket requests for "any and all records" or the "entire file." You must specify the information you are requesting. Please write your full name (first middle initial and last name(no nicknames)), date of birth (month, day and year),last 4 digits of your social security number, name of facility or person who is to receive records, phone, fax and full address as records are mailed. In Part 1 please designate specific dates or the year that records would be released. If you want all previous records as you are transferring care, you would place year of your first appointment on that line. If you only need records release for the last year you would place that year next to date if you are unsure of specific dates or visits or tests. Please determine what records are needed and check all boxes related to records you need example progress notes, radiology reports, laboratory reports.

To Authorize Others to View and Manage Your Medical Records

Should I get a vaccine/immunization? (flu, shingles, etc)

Guide to Vaccinations for People with MS

We commonly get questions about vaccinations or immunizations for people with multiple sclerosis (MS). Vaccinations are very important for health and have been proven to help prevent many different diseases which may in some cases cause severe illness, disability or even death. There is some information about the safety and effectiveness of many vaccines for people with MS, however information about many issues is incomplete. Concerns relate to whether vaccinations can trigger MS exacerbations, whether vaccines are effective when patients are taking certain immune medicines or steroids and whether vaccinations are safe for people with medicines that decrease immune function. In general people who are experiencing any relapse should defer vaccination until 4-6 weeks after the onset of the relapse.

It is important to recognize that vaccinations are created by different mechanisms and many types of vaccinations are made using killed organisms or using only portions of organisms and cannot cause actual infection. These are considered to be inactivated or component vaccines. Vaccinations may also be against a toxin that an organism creates (tetanus) and do not contain live organisms. A more concerning group of vaccines for people with MS are those that are produced using live but weakened organisms (live attenuated vaccines).

Should I get immunizations?

Our physicians currently recommend that when possible people with MS should not receive live attenuated vaccines. Infection is known to be a trigger for both MS exacerbations as well as worsening of MS symptoms without new lesions (pseudo-exacerbations). When possible we prefer people not receive the zoster vaccine, influenza nasal vaccine, yellow fever vaccine, typhoid vaccine, rotavirus, or oral polio vaccine. The MMR (mumps measles rubella) vaccine is a live attenuated vaccine however several studies have not detected increased relapse risk following its administration. However, MMR vaccine and the other above live/attenuated vaccines should be avoided in patients who are receiving immunosuppressive therapy as they may trigger harmful infection or chronic carrying of the weakened organism. The risk of infection and complications of infection must be balanced with other risks and should be discussed individually with your personal physicians, should live vaccine use be considered appropriate.

The use of killed, toxoid, subunit or conjugate vaccines would be expected to have less risk of aggravating MS and some studies have supported the safety of this type of vaccination. These vaccinations include influenza (injectable flu vaccines), tetanus, hepatitis B, hepatitis A, inactive polio vaccine, pneumococcal vaccine, human papilloma virus (HPV), Hamaenophilus influenza type B, Tick Borne-Encephalitis, Japanese B encephalitis, cholera, and rabies. There have been enough studies that Drs. Heyman and Zaydan encourage their patients with MS who need these vaccines (esp. tetanus, hepatitis B and the flu shot) to take them. They feel immunizations should help prevent infections which may trigger MS exacerbations.

Will immunizations work to prevent infection when I am on a disease modifying MS medication?

Information is incomplete about the effectiveness of vaccinations for people taking many MS disease modifying medicines. Small studies of interferon beta (Betaseron/Avonex/Rebif/Extavia) suggest that the flu vaccine is effective. Fingolimod (Gilenya) also appears not to decrease the effectiveness of injectable flu vaccine. Adequate studies with glatiramer acetate (Copaxone) natalizumab (Tysabri) and teriflunomide (Aubagio) have not been performed. Our physicians believe glatiramer acetate and natalizumab might not impair vaccine effectiveness but are uncertain about teriflunomide (Aubagio). It is highly likely that immunosuppressive therapy (chemotherapy-type drugs) sometimes used for MS and related disorders will decrease vaccine effectiveness. Because the rate of serious infections is higher when people are receiving immunosuppressive agents, vaccination should be discussed individually with your physician if you're receiving mitoxantrone (Novantrone), methotrexate, cyclophosphamide (Cytoxan), rituximab (Rituxan), azathioprine, mycophenolate mofetil (CellCept) and others. Effects of immunosuppressive medications may persist for months or longer after they have been stopped. Some immunizations may need to be repeated after very high potency immunosuppressive therapy, such as with bone marrow stem cell transplantation. It may be necessary to check antibody levels 4 weeks after vaccination is given (for some people with MS on the above agents) to determine vaccine effectiveness. IV IgG may impair the effectiveness of vaccines for up to 6-12 months after therapy with IVIG G has been discontinued.

Will steroid medications interfere with my vaccinations? 

Steroid medications and ACTH are sometimes used for MS patients. The use of steroids and vaccinations in people with MS has not been completely addressed by research studies. A concern is that steroids will prevent the vaccination from working to fully protect against infection despite vaccination. We suggest that immunizations be delayed for at least 2 weeks following a brief (less than 2 week) course of steroids or ACTH therapy whenever possible. If steroids have been taken for more than 2 consecutive weeks, it is suggested that patients should wait at least 3 months after stopping steroids before administering a live-virus vaccine.

Must a MS patient avoid others who have recently received a vaccination? 

Our main concern about people with MS is when their personal contacts have recently received a live /attenuated vaccination. People with MS should avoid contact with body fluids or secretions (including saliva and tears) from individuals who have recently received a live attenuated vaccine. Although they contain live attenuated virus, the Measles-mumps-rubella (MMR), varicella (Chicken Pox), rotavirus, and intranasal flu vaccines may be given when an immunosup­pressed person with MS lives in the same house. Household contacts of immunosuppressed people with MS may receive the zoster vaccine if indicated as well. The oral polio vaccine should not be administered to any household contact of a person with MS on an immunosuppressive medication. 

What if a person with MS is exposed to an infection they have not been vaccinated against?

For some infections, specific immune globulins may be indicated (especially for persons who have received immunosuppressive medications) instead of or in addition to vaccination. Discuss this with your physician if a question arises.

My copays are high; is there any financial assistance for me?

There is a list of financial assistance programs on our Resources page.

I have a utility shut off notice and need assistance.

Please let us know via phone call or MY UPMC that you are having a Utility Shut off Notice form faxed to us. Form should be faxed to 412-692-4907. If your utility provider does not use a form and requires that a physician call to delay turning off service please use MY UPMC or  call us with the following information: Name, address, name, name the bill is under and account number. We will attempt to call the utility provider within 72 hours of receiving this information.

When is my next appointment?

If you need to communicate with our office between appointments, we encourage you to use MyUPMC. Your messages via MyUPMC are most efficiently handled in a safe and confidential manner by our staff. With a single login to MyUPMC, you have access to services that include the following:
* Outpatient medical information
* Doctor communication
* Secure, online access to portions of your medical records, including test results
* UPMC AnywhereCare for round-the-clock online medical visits
* UPMC Health Plan
* Bill paying

I am changing my insurance; who needs to know this?

Please call 412-692-4920, option #1, to notify us about any changes to your insurance plan. It is important that your insurance information is current in our system.

I missed a dose of medication; what should I do?

My Vitamin D level is low; do I need a prescription?

Vitamin D is naturally produced in the skin with some light exposure. While vitamin D is well known to help prevent osteoporosis and maintain normal calcium balance, it has been shown in many research studies of non-multiple sclerosis (MS) populations to help balance and reduce the risk of falls, stroke, and congestive heart failure; to enhance the ability to fight infection; and to improve muscular strength and lung function.

Vitamin D has been shown to play an important role in MS itself. Vitamin D may impact the risk of developing MS.

The epidemiological evidence shows that the risk of getting MS decreases as people live nearer to the equator, where presumably they have greater sun exposure and, therefore, higher levels of vitamin D. Studies have also shown that vitamin D intake, either through food sources or as a supplement, appears to decrease the risk of developing MS. Lower blood levels of vitamin D are associated with a higher risk of developing MS later.

Vitamin D also appears to decrease disease activity in people with known MS. 

Evidence suggests that vitamin D intake decreases the risk of MS relapses. One study showed that vitamin D supplementation decreases the risk of MS relapses when added to a disease modifying therapy; this decrease was greater than with disease modifying therapy alone. This may occur because there are vitamin D receptors on certain types of immune cells. People who have a relative with MS may want to consider vitamin D supplementation to decrease their risk of developing MS. Appropriate vitamin D dosing may be determined by one’s physician or pharmacist.

Vitamin D also may decrease the risk of certain conditions known to be associated with MS.

People with MS are at high risk for thinning of the bones (osteoporosis). Appropriate blood levels of vitamin D, in addition to adequate dietary calcium and weight bearing exercise, are essential to maintain bone health. As low levels of vitamin D have also been linked with depression and those with MS are more prone to developing depression, it is important to maintain adequate blood levels of vitamin D.

While vitamin D levels may be attained with sun exposure, many people with MS in this region need to supplement their diet with foods rich in vitamin D or with supplements containing vitamin D. Some foods rich in vitamin D include:

  • Fatty fish, like tuna, mackerel, and salmon
  • Foods fortified with Vitamin D, like some dairy products, orange juice, soy milk, and cereals
  • Beef liver
  • Cheese
  • Egg yolks
  • Some mushrooms like Portobello, Shiitake, Morel, Chanterelle, Oyster, and White
  • Tofu
  • Lean pork

In general, we suggest people with MS have periodic monitoring of their vitamin D level. Vitamin D3 supplementation with up to 2,000 IU a day is considered safe for adults without other health conditions.

I heard about Gadolinium based contrast; is this harmful?

An emerging concern with MRI contrast is that the body may not fully eliminate the gadolinium and that some of it may remain in the body. Recent studies have revealed that the gadolinium contrast may remain in the body, particularly the brain or bones. Until recently, the medical community was unaware that gadolinium contrast was not completely excreted by people with healthy kidneys and that at least in some patients gadolinium remained in the body.  No study has shown this gadolinium to be harmful, however as we did not know this process occurred, adequate studies of long-term safety have not been completed.  We believe that given the likelihood of numerous MRI scans for people with MS over a lifetime that this is an important issue.  We are aware that the National MS Society is formulating an information and action plan. To learn more, please continue reading here.

What is the JC virus?

The John Cunningham virus (JC virus) is very common; between 70 and 90 percent of all people have this virus. While many people carrying it will not experiences any complications, for a small number of people with MS, the virus can cause problems. Once an individual's immune system is already impaired as a result of an illness or immunosuppressive medication, the virus becomes activated. Because those with MS already have a weakened immune system, they are further at risk. When the virus reaches the brain, it attacks the brain's white matter as well as the cells that create myelin, a coating that covers and shields nerve cells. This infection is referred to as progressive multifocal leukoencephalopathy (PML), and it can be highly debilitating and possibly fatal. Individuals with MS who are taking Tysabri are especially at risk. Your risk of this infection is also higher if you have previously received other immunosuppressive medicines such as chemotherapeutic drugs like cyclophosphamide (Cytoxan), methotrexate, Imuran (azathioprine), mycophenolate mofetil (CellCept), Fingolimod (Gilenya), teriflunomide (Aubagio), or others. Moreover, the risk of this infection is considered higher in patients who have received a medicine for more than a year and a half.

While testing positive for the JC virus does not guarantee a person will have PML, it is the only way one can contract this infection. Thus, if you are receiving drug modifying therapy, it is important to get tested for the virus regularly; even a negative result cannot grant much reassurance. A person with MS can become infected at any time during his or her treatment.