Your Questions Answered

What features in a treatment do you look for when you're working with the patient to select the right treatment?

Many factors come into play when choosing a relapsing MS therapy. The major factors are efficacy (the effectiveness of the medication) and patients' medical history, the safety of the medication and the tolerability profile of the medication. Having an earnest discussion about these factors and then coming up with a mutually agreed upon decision is the most successful approach.
Dr. Hughes

How does Rebif work?

[video: VID8.flv]
Dr. Moses

Is convenience a factor in choosing a therapy?

Convenience is a factor in choosing a relapsing MS therapy but shouldn't be the most important factor. Balancing efficacy, safety and tolerability profiles of the medication is always the best approach in determining which MS therapy should be started as well as considering patient history.
Dr. Hughes
I am newly diagnosed, and I don't seem to know how to talk to my doctor. Any tips? What do you typically ask your newly diagnosed patients?

[video: VID19.flv]
Dr. Rizvi

How are MRIs used in diagnosing MS?

MS is a complex diagnosis as there is no one test to determine if someone has the disease. The diagnosis should only be made after a detailed interview, thorough neurological examination, extensive blood work, and magnetic resonance imaging (MRI) of the brain and sometimes spinal cord. MRI is an extremely useful tool for detecting abnormalities in people with MS. In fact, we typically see between five and ten spots on a brain MRI for every one symptom a patient has.

However, MRI abnormalities are not specific to MS and have to be interpreted in conjunction with a patient's history and findings on examination. A spinal tap and visual evoked potentials (a noninvasive test that measures how long it takes for signals to travel from the eyes to the brain) are sometimes necessary to help establish an MS diagnosis. MRI is also used to help monitor the evolution of the disease and response to treatment.

Dr. Tullman

If you've already been diagnosed with relapsing MS, what benefit is there for additional MRIs if you are already on treatment?

[video: VID32.flv]
Dr. Singer

I haven't had any plaques show up on my MRI, and the spinal taps have also been negative, but my doctor suspects I have MS. I have another MRI scheduled because I have had more problems recently. I haven't been prescribed any of the MS treatments. Is this a typical journey to diagnosis?

[video: VID18.flv]
Dr. Rizvi

Is there any way you can determine how long someone has had MS?

[video: VID9.flv]
Dr. Moses
Can you highlight some things you can do to help those with sexual problems?

Help cannot be offered if it is not discussed. Too often, couples do not discuss the issues in a healthy way which closes the door to communication about the problems and possible solutions. Patients typically do not offer up this information to their providers unless asked and frequently they are not asked. Providers can offer solutions or suggestions so I recommend discussing problems with them. There are many solutions to sexual problems but the conversations must be held first.
Pat Kennedy

How do sexual problems differ in men and women?

The most significant change is that men experience erectile dysfunction and women experience vaginal dryness.
Pat Kennedy

When we talk about managing some sexual problems, besides communication, what are some other tips you provide to your patients?

Decide what can be changed. Is it a primary problem or secondary? Symptoms can be better managed making sexual function more enjoyable. Fatigue is a huge problem for most anyway, and people try to engage sexually at times when fatigue is most severe. Get clever about that to make it work for you. If the relationship is the problem, seek counseling.
Pat Kennedy

How do doctors determine if the symptoms you've described to them are caused by MS? Does it correlate with their MRI?

We don't always know at first what might be MS or other problems. Sometimes further evaluation must be done. The MRI cannot tell us that the "sex" area of the brain is affected because there is not a single area in the brain fully responsible for all sexual functions. If there are many spinal lesions, that is an indication. Managing these symptoms is more the art of medicine not the science.
Pat Kennedy

What are some of the myths related to multiple sclerosis and sexual dysfunction?

The largest myth is that people with MS don't care so much about sexual problems because they are so involved with their disease. Another is that people with disability are no longer sexually active. Neither is true and both are grossly unfair.
Pat Kennedy

How do we know if it's menopause or if it's MS?

Many symptoms are similar. Your provider can tell you if you are showing signs of menopause.
Pat Kennedy

Following my diagnosis of relapsing MS, how do I talk to my spouse about having kids?

I recommend couples have the discussion as they ordinarily would. Adding MS is just one consideration. Couples do need to understand that there may be some limitations from MS and figure out ways to work around them. You should consult with your healthcare provider about any decisions regarding pregnancy.
Pat Kennedy
I was diagnosed in 1995 with MS and have never had anything show up on MRI. Do you have patients with normal MRIs? And why do you think this is?

[video: VID33.flv]
Dr. Singer

How are MRIs used in diagnosing MS?

MS is a complex diagnosis as there is no one test to determine if someone has the disease. The diagnosis should only be made after a detailed interview, thorough neurological examination, extensive blood work, and magnetic resonance imaging (MRI) of the brain and sometimes spinal cord. MRI is an extremely useful tool for detecting abnormalities in people with MS. In fact, we typically see between five and ten spots on a brain MRI for every one symptom a patient has.
However, MRI abnormalities are not specific to MS and have to be interpreted in conjunction with a patient's history and findings on examination. A spinal tap and visual evoked potentials (a noninvasive test that measures how long it takes for signals to travel from the eyes to the brain) are sometimes necessary to help establish an MS diagnosis. MRI is also used to help monitor the evolution of the disease and response to treatment.

Dr. Tullman

I haven't had any plaques show up on my MRI, and the spinal taps have also been negative, but my doctor suspects I have MS. I have another MRI scheduled because I have had more problems recently. I haven't been prescribed any of the MS treatments. Is this a typical journey to diagnosis?

[video: VID18.flv]
Dr. Rizvi

How often should an MRI be done? I was diagnosed last October, and have not had another MRI since last September.

[video: VID20.flv]
Dr. Rizvi
I am newly diagnosed, and I don't seem to know how to talk to my doctor. Any tips? What do you typically ask your newly diagnosed patients?

[video: VID11.flv]
Dr. Moses

How often should an MRI be done? I was diagnosed last October, and have not had another MRI since last September.

[video: VID20.flv]
Dr. Rizvi

When it comes to journaling their health experiences and relapses, what type of information do you like patients to present to you during the office visit?

I have questionnaires which are filled out prior to the visit and I appreciate knowing the following: Any new problems or worsening of old? Are you on any new meds, OTC, vitamins etc? Have you stopped any medications and why? What percentage of time are you on your immunomodulating agent? How are your injection sites? and describe them. Rate your energy, vision, mobility, bowel and bladder function, pain, sexual function. Rate your social, recreational, professional, family and sex life.
Dr. Krolczyk

My neurologist has not ordered any lab work since my diagnosis of relapsing MS. Should I be getting regular lab work? If so, which tests?

[video: VID12.flv]
Dr. Moses

How are steroids used when I am on a disease-modifying drug? I am frequently prescribed steroids when I have a relapse. Should I be concerned? Does this mean my MS treatment isn't working for me anymore?

[video: VID21.flv]
Dr. Rizvi

How does Rebif work?

[video: VID8.flv]
Dr. Moses
What are the common side effects with Rebif? Are there any serious ones as well as mild ones?

[video: VID13.flv]
Dr. Moses

I have been using Rebif for two months and I have been experiencing sleeplessness recently. When I take my injection at 4:30 pm, I am restless at 3:30 am.

[video: VID2.flv]
Sarah Batchelder

I have been on Rebif for four months and the flu-like symptoms seem to be subsiding. How long does it usually take for the flu-like symptoms to go away?

[video: VID27.flv]
Karen Orband

I have been on therapy for six months, but have not experienced any real side effects. How can I be certain that the meds are working?

[video: VID34.flv]
Dr. Singer

Does Rebif cause a person to be tired the day after an injection is taken?

[video: VID6.flv]
Karen Carlin

Will it hurt me not to take my Rebif shots for a while?

Although it can be difficult to take every single injection, you should do your best to take your medication as directed by your physician. If you are considering stopping or interrupting your medication for a prolonged period of time, discuss it first with your MS health care provider (for example, if you are a woman and want to become pregnant). If you are not taking your medicine as it was prescribed or if you are experiencing side effects, you should be open and honest about it and discuss it with your MS health care provider. There is more than one treatment option for most patients.
Dr. Tullman

What are some general recommendations if you have elevated liver enzymes?

[video: VID22.flv]
Dr. Rizvi

I am on Rebif and have been told that my liver enzymes were elevated 2.5 times above normal, but my doctor says not to be worried until they are five times higher. When should I take action?

[video: VID1.flv]
Sarah Batchelder
What is a relapse?

A relapse or MS attack or exacerbation (all are the same) is when you have a new or worsening symptom related to multiple sclerosis activity. Typically the change must be present for at least 24 hours for it to count as a true MS exacerbation (relapse). A pseudo-exacerbation (relapse) is when there is worsening of MS symptoms due to another cause such as a bladder infection, becoming overheated or having a viral illness.
Dr. Hughes

Does MS ever stabilize where one can expect no more exacerbations if one stays on their meds?

[video: VID35.flv]
Dr. Singer

Is an increase in fatigue a warning sign of an oncoming relapse?

Fatigue can be a warning sign for a relapse but the majority of time it is not due to a new relapse. Fatigue is the number one complaint of MS patients. Fatigue is commonly associated with other problems seen in MS such as bladder infections, too much stress, poor sleep and diet.
Dr. Hughes

What is an exacerbation? How is that different from a relapse? How long should each last? And when would I call my neurologist's office about this?

[video: VID14.flv]
Dr. Moses

Will stress cause a relapse?

People with MS often feel worse with increased levels of stress and many people have experienced relapses during stressful periods. However, there is no convincing scientific evidence that stress causes relapses. In any event, people with MS should do what they can to minimize their level of stress.
Dr. Tullman

How long does it take for a relapse to go away?

Improvement from exacerbation relapse is variable and can take days, weeks, or sometimes even months, to resolve. Steroids are commonly used to shorten the length of time of a relapse and hasten return to baseline function, but they have shown no significant benefit on disease progression. In fact, long term use of steroids may be more detrimental than beneficial due to well known complications such as osteoporosis, weight gain, hyperglycemia, fluid retention, acne, cataracts, and psychiatric effects.
Dr. Krolczyk

Can episodes last more than six months? And, if I am experiencing a certain issue for longer, does that mean it is permanent?

[video: VID15.flv]
Dr. Moses

How do you know when symptoms from a lengthy relapse are not going to get any better?

[video: VID36.flv]
Dr. Singer

I took a break from my Rebif 44 mcg three times per week, and now I am having a relapse. I want to start back at 44 mcg without titration. Is that okay?

[video: VID3.flv]
Sarah Batchelder

Will stress cause a relapse?

There has been no association found between physical stress and MS onset or relapse. Psychological stress has not been adequately studied to prove or to disprove an association between stress and MS onset or relapse. Because of the lack of strong scientific evidence, we cannot state whether this association exists. Anecdotally, we know our immune system is influenced by hormones which may be influenced by both psychological and physical stress.
Dr. Krolczyk
Why is heat such a factor in MS?

Multiple sclerosis causes demyelination and axonal loss which is nerve damage. This can occur anywhere in our central nervous system. Nerve damage slows the ability of the nerves to function, and heat further slows down nerve impulse transmission in demyelinated regions. Even a slight increase in the body's core temperature is maybe enough to cause symptoms of heat intolerance in a person with MS.
Dr. Krolczyk

What will help to describe symptoms to a doctor? For instance, dizziness, confusion, mild seizure...

[video: VID17.flv]
Dr. Moses

I was diagnosed in November, 2005. And I still have difficulty determining my level of fatigue. By the time I feel tired, I've already passed the point when I should have stopped and rested. What should I do?

[video: VID37.flv]
Dr. Singer

So, are active lesions in the corpus callosum reason to be more concerned than lesions in other areas of the brain?

[video: VID23.flv]
Dr. Rizvi

How do I know when to call my neurologist about something I think may be related to my MS?

[video: VID16.flv]
Dr. Moses

What is a relapse?

A relapse is either a worsening of neurological symptoms that you already have, or the appearance of new symptoms in the absence of fever that lasts at least 24 hours. Relapses are also referred to as "exacerbations," "flares" or "attacks." Relapses may occur at any time, usually without warning, and can be mild, moderate or severe. In RRMS, relapses are followed by a long or short period of time when symptoms completely or partially go away.
Dr. Krolczyk

How do you know when symptoms from a lengthy relapse are not going to get any better?

[video: VID36.flv]
Dr. Singer

Can episodes last more than six months? And, if I am experiencing a certain issue for longer, does that mean it is permanent?

[video: VID15.flv]
Dr. Moses

How long does it take for a relapse to go away?

Relapses sometimes never completely resolve and the person is left with a permanent deficit. However, typical relapses last for days to weeks and then gradually resolve.
Dr. Hughes

What is an exacerbation? How is that different from a relapse? How long should each last? And when would I call my neurologist's office about this?

[video: VID14.flv]
Dr. Moses

How do you communicate how you feel or your limitations when you look perfectly normal? It is hard for my family to understand that I am really tired or in pain.

Some of the most bothersome MS symptoms are the so called "invisible" ones like fatigue or pain. Fatigue can be one of the most disabling symptoms of MS. It may be more likely to interfere with daily life than any other MS symptom. About forty percent of people with MS experience chronic pain. Fortunately, it is mild and not a major problem for most people. Daily MS symptoms, such as fatigue or pain, should be discussed in detail with your MS health care provider.
A number of medications and/or nonpharmacologic measures (for example, lifestyle modifications or physical therapy) can alleviate symptoms. However, it is important for family members, significant others, and in some cases, co-workers or employers, to understand the impact these symptoms can have on people with MS. If necessary, your MS health care provider can help communicate this.

Dr. Tullman
How does Rebif work?

[video: VID8.flv]
Dr. Moses

Does Rebif cause a person to be tired the day after an injection is taken?

[video: VID6.flv]
Karen Carlin

I took a break from my Rebif 44 mcg three times per week, and now I am having a relapse. I want to start back at 44 mcg without titration. Is that okay?

[video: VID3.flv]
Sarah Batchelder

Do body size and weight make a difference for dosing? How can I be sure that the 44 mcg dose is effective for everyone? I am told (by others) that overweight people are not receiving their needed dosage.

[video: VID4.flv]
Sarah Batchelder

When I have a bad cold and don't feel too well, is it okay to skip treatment to avoid feeling worse?

[video: VID5.flv]
Sarah Batchelder

Recently, I heard that if you buy your Rebif supply month-by-month then you do not need to keep it refrigerated. How long can Rebif be left out safely?

[video: VID7.flv]
Karen Carlin

Will it hurt me not to take my Rebif shots for a while?

The benefits of Rebif have been studied with shots 3 times a week and have been shown to be efficacious in decreasing relapses, slowing disability, progression and decreasing MRI lesions. If you start missing injections then you maybe increasing your chances of getting a relapse. Do your best to be honest with yourself and your physician, we are in this together and can help you with any medication associated with problems you may develop. Take control of MS and do not let it take control of you.*
*MRI disclaimer: The exact correlation between MRI findings and the current or future clinical status of patients, including disease progression, is unknown.
Dr. Krolczyk

How long does it take to adjust to a higher dose (44 mcg) of the Rebif?

[video: VID28.flv]
Karen Orband

I was told that I cannot take antibiotics if I am on Rebif. If that is accurate, what do I do if I need antibiotics at some point?

[video: VID29.flv]
Karen Orband

I inject myself Monday, Wednesday, and Friday. The time for each of my injections varies between 4:00 and 7:00 PM. Do I need to leave exactly 48 hours between my injections?

[video: VID30.flv]
Karen Orband

Does Rebif only treat patients with relapsing-remitting MS?

[video: VID24.flv]
Dr. Rizvi

Is there a way to tell how long Rebif will be effective for me?

[video: VID25.flv]
Dr. Rizvi

I have not had an exacerbation since starting your therapy. How much longer should I take it if my MRIs and lab results are good?

[video: VID26.flv]
Dr. Rizvi

I have been using Rebif for two months and I have been experiencing sleeplessness recently. When I take my injection at 4:30 pm, I am restless at 3:30 am.

[video: VID2.flv]
Sarah Batchelder

My physician told me to cut back my Rebif dose to 22 mcg, three times a week. Is that an effective dose?

[video: VID31.flv]
Karen Orband

I have been on Rebif for four months and the flu-like symptoms seem to be subsiding. How long does it usually take for the flu-like symptoms to go away?

[video: VID27.flv]
Karen Orband

On Monday, I will begin taking Rebif and am very nervous about the side effects. How should I manage the side effects?

[video: VID38.flv]
Karen Orband

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Your Questions Answered