Tag Archives: MS Medications

Where and How to get Your MS Information

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                                                  “Tips and Cautions”

The upside of the internet and social media is that mounds of information about MS are available immediately with the stroke of a few keys and searches. Folks need as much knowledge that they can get to help them understand and handle this complicated disease.

The downside of the net–besides being overwhelming–is that one has to be very careful with the validity of the source and information of what is read. I read discussions between MSers on Facebook, other social media, and MS Association sites and am concerned by how much info is misleading, incorrect, and cause for fear. Bad information causes bad decisions.

1. Understand which treatments/drugs help symptom improvement.

While it is gratifying that DMTs (Disease-Modifying Therapies) are reducing relapses for many MSers, participants in some discussions talk about how their symptoms improved when they were taking a certain DMT.

This is not true. Here is what one MS specialist-neurologist stated:

“The disease modifying medications do not directly help with symptoms in MS. these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better. I told them that the medications are to keep from getting worse and not to make one better.”(see Source #1 below)

Now, there ARE drugs to directly and successfully treat symptoms (e.g. depression, bladder incontinence…), and relapses (e.g. steroids). These often improve symptoms and help a patient feel better, but not alter the disease course or direction of the disease itself.

2. No treatment exists today that will stop the disease activity/progression and damage completely, or reverses it. (see Source #2 below)

Recently, I followed a discussion on FB about stem cell treatments that miraculously accomplished this for them.  Most of the participants that had the procedure were diagnosed within the past two-three years. These participates probably did not know their personal pattern of relapses; it’s not uncommon to lose one’s sight or have impaired mobility for a long stretch of time in their initial relapses. Their recovery was more likely due to the relapse being over and they’re being back into remission with little residual, which is very common in the early years of the disease.

Furthermore, it takes a while for a patient to understand their own case of MS and how their body responds to a variety of things—both medicinal and non-medicinal. Nowadays, it is even more difficult since a newly-diagnosed person during their first couple of years are receiving DMTs and drugs for relapses and symptoms all at the same time. What is doing what?

3. Be careful with reading statistics, study results, etc.

I worked a number of years in my professional jobs doing financial analyses and market research. One of the things I know from that experience is that conclusions of studies can be misleading by what numbers are used and how numbers are presented. I’ve become quite the cynic about this.

For example, one might read “according this study, 50% of patients using XYZ showed a 38% reduction in…” How many people were used in the study, what were their characteristics, how long did they take XYZ, what were their side effects, who did the study, etc. You have to dig deeper, be cautious, use common sense and talk to your professionals when you hear something of interest and want to pursue it (like trying a new medication).

How would you feel if you discovered that a study was based on eight people?

4. When gathering information, consider the following:

• Use common sense and logic.
• If something sounds too good to be true, it probably is.
• Listen to your gut, not what you want to hear.
• There is no cure, and if something says you will be cured, throw it away. You can manage MS and even control it in many ways, but there is no cure yet.

5. What are good Sources of Information?

MS associations and Pharmas are good sources of information that can be trusted for acquiring basic MS knowledge about the disease itself, the symptoms, current research/events that are happening, and treatments that are available. They also can be helpful in providing programs and forums for people dealing with MS to get together and interact.

Where to use caution?

• When listening/reading information that MS associations, Pharmas, and neurologists present statistical information about study/treatment results. They all recommend DMTs as the first line of defense, and one has to be careful of taking this information at face value. Re-read #3 above, and know that numbers/statistics can be arranged to project just about anything. Dig deeper into what you are told. You may be surprised.

For example, a current starting point to get specific data on DMT’s is Source #2 below. And read closely. On Page 13, the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS)<3 after 10 years.  After 20 years they found while 51% remained benign, 21% had progressed to EDSS >6 and 23% had converted to SPMS.

The point? Stats like these could help a patient weigh their options more carefully.

• A standard line of advice is “consult with your doctor.” Do you trust your doctor? How experienced is your doctor with MS? Does your doctor listen to you and talk with you, respect your questions and doubts? If the answer is no to any of these, it’s a red flag. Remember that doctors get kickbacks, and truthfully are limited to prescribing drugs and giving referrals. Get second and even third opinions.

• Social media sites are wonderful for sharing information and feelings with other peers, but remember that two-thirds of effective communication is through body language. There is no eye contact, no voice to hear, etc. that can make judgment of people difficult. Learn the background of the people you engage with. If reading an MS blog, make sure it is a credible, respected and experienced person that is doing the writing.

Here is a link to my Resources/Links page on my website that is quite comprehensive, not overwhelming, and judged by many to be trusted http://debbiems.com/links-resources_271.html . (You can check out my background, experience and credentials in other sections of my site.)

(Sources)
#1 The NPR Diane Rehm Show (9/24/2012) aired “Diagnosing, Treating and Living with MS.” A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

#2 The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidence http://bit.ly/1oEnTqY  September, 2012

www.DebbieMS.com
Author/MS Counselor/Living with MS

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Making Decisions when Managing MS

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In many online MS discussion groups, participants discuss what is the best thing to do or take for MS, and what is “bunk.” Subjects range from treatments, diet, and stress to exercise, experimental drugs and alternative medicine.

If one seeks information from MS organizations or medical websites, the standard directive is “ask your doctor.” But realistically, if you ask your doctor, most will recommend drugs. Drugs for symptoms, for relapses, and long-term DMD treatments. There are two reasons for this:

1. What else can they do for you in the fifteen minutes that they see you? They can’t cure you but they will want to make you feel better and try to prevent you from getting worse. In addition, doctors certainly don’t have the time to educate you or answer a lot of questions. They will refer you instead to physical/occupational therapy, pain clinics, etc.

2. Relative to prescribing drugs, doctors depend on the scientific evidence of these substances. They will send you off with scripts for tests initially and ongoing. Relative to body wellness for MS, while they would agree that exercise and proper diet is good for you, they will not specifically address these topics because there has not been enough scientific evidence done to determine their positive/negative impact on MS. So again, the patient is referred elsewhere.

Everyone’s body and MS are unique, and everyone responds differently to anything you take or do to your body. No two cases are alike in response to these actions just like no two cases of MS are alike. While some things work for some, often they don’t work for others.

So, when you need to make a decision regarding something about your MS and are stuck, what should you do?

Personally, I practice common-sense, logic, and balance for both my body’s wellness and medications I choose to use. I ask myself these questions:

• Does it make me feel better?

• What are the short/long term risks of doing or not doing something?

• Do the benefits outweigh the risks that I am willing to take?

• Am I doing everything I can possibly do to prevent infections, sickness, falls…?

• Did I gather enough research from reliable sources to help me make my decision?

There is no question that proper diet, exercise, sleep, stress management, weight control, etc. are essential for vital body functions and helping to manage/control MS. This is true for a person without MS, but especially important for a MS patient to help managing/controlling their disease.

I am open-minded and listen to others in online discussions as part of my personal research for making my own decisions about managing my MS. I dig through the internet for studies and statistics. And I consult with doctors and other health care professionals for their insights; but a health professional is not my only source of action or fact-finding, giving him/her a carte blanche.

Then I document and keep journals of what I do and what the effects are.

There are no absolute rights or wrongs. I know my body well, but I leave myself open to trying something new if I feel it is safe and I have nothing to lose by trying. Like everyone else with MS, I want to feel better and get better.

One rule I follow for myself with regard to making any decisions about anything: “When in doubt—don’t!” I can always revisit the situation later.

Ultimately, decisions are made by me. I only have one body and am the one who has to live with it.

www.DebbieMS.com
Author, MS Counselor, Living with MS

MS Blogs

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January 12, 2014

I am proud to announce that my MS Blog was selected for Neurology Now Magazine’s list of Patient Bloggers! http://journals.lww.com/neurologynow/Fulltext/2013/09060/Neurology_News__Having_Their_Say___Patient.16.aspx

Neurology Now Magazine:
December/January 2013 – Volume 9 – Issue 6 – p 14

Neurology News: Having Their Say: Patient Bloggers

“While your doctors can give you information and guidance about your condition, they’re not always the best source for practical advice. Patient bloggers offer that in spades as they chronicle their own journey with neurologic disease—sometimes funny, sometimes painful, but above all else, familiar. We tried to find blogs that are well-written, honest, and responsible in the way they handle medical information.”

Neurology Now is sponsored by the American Academy of Neurology and the American Brain Foundation. Free for subscribers, information is provided about various neurological problems in their publications. Included in each of their issues are also stories written about individuals—both well-known and unknown—who are dealing with a disorder/disease successfully. Here is a link to check it out http://patients.aan.com/index.cfm?axon=redirect&&path=/go/neurologynow  .

Also check out my 57 articles within this blog at the bottom of this blog page, as well as my website that contains much info about multiple sclerosis www.DebbieMS.com .

Best-

Debbie
Managing MS, Straight Talk…

Prednisone & Corticosteroids: Helpful Tips

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“What doctors/pharmacists don’t tell you.”

January 3, 2014

It is amazing how frequently the subject of steroids comes up. Just in the last two weeks, three people told me they were on prednisone and they were all irritable about the side effects. One was taking them for sinus problems; another was taking prednisone for arthritis. The third was taking them for an MS flare-up.

They are powerful drugs and are prescribed often for people with and without MS. Why? Because their primary purpose is to reduce inflammation. And inflammation occurs in all parts of the body, and these drugs do help.

But there is much to know about steroids, and unfortunately, the doctor and the pharmacist never tells it all. The first experience with steroids is horrifying to say the least, and creates tremendous confusion and stress. I personally hated them in the beginning, but after I understood my own body’s reactions and the fact that they did work for me, steroids became my friend.

For folks with MS, corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). Solu-Medrol is given intravenously for 3-5 days usually at home (about 1-2 hours per day). Prednisone is given orally usually over a 10-14 day period, beginning with a very high dosage (e.g. 80mg/day works for me) and tapering down the last week to 10 mg. by the last day.

What to know about steroids:

• Again, the purpose of steroids is to reduce inflammation. When the dosage is high, the immune system will become suppressed. Therefore, you want to take all measures to keep your resistance up and your exposure to infections, colds and viruses low. If you currently have an infection or virus causing the flare-up, try to get rid of the infection/sickness before getting on the steroids if possible.

• A very common side effect of steroids is water retention. Eliminate as much salt as you can from your diet while taking them. This goes beyond table salt. Canned, frozen and packaged foods, pickles, condiments, luncheon meats, etc. are loaded with sodium; so avoid these and eat bland and fresh foods. Often, people will get what they call a “moon face”; the face can become full and rounded.

• Appetite usually increases when taking steroids, so stick to snacks like carrot sticks, celery, apples, or unsalted popcorn. The sacrifice of a strict food regime for a maximum of two weeks is well worth the extra pounds you won’t gain and have to worry about later.

• Once you start steroids, follow the complete program and do not just quit taking them. If you do, it can inhibit your adrenal glands from producing the natural amount of cortisol later.

• A universal complaint is insomnia. Speak with your doctor about sleeping pills. Even with a sleeping pill, you may only get four to six hours of sleep. Try to read, do paperwork, or anything that will keep you from dwelling on not sleeping.

• There are many other side effects when taking steroids; the amount, type, duration will be different for everyone. For example, I get supercharged and euphoric when I’m on steroids, especially when they kick in and my symptoms are improving. I also get very constipated. Other frequent complaints include irritability and mood swings. If you are anxious, consider asking your doctor about an anxiety pill to minimize stress.

• For women, it is not proven yet whether steroids affect birth control pills. It is always a good idea to use additional protection while on steroids.

• Try to temper your expectations and not compare yourself to anyone else. Some people respond faster and better than others. Take notes everyday about what is improving, what isn’t, how much… It will help with your next episode. You will learn your own body reactions and patterns as time goes on.

• When a steroid program is finished, a person will often go into drug withdrawal. Symptoms may worsen again, and different side effects can pop up. For me, I get the shakes, anxiety, weepy, acne, some hair loss, sleepy; and my symptoms will be worse than before I even got on the steroids. After my “withdrawal” period, my symptoms will adjust to what will be normal for me; and all of the other side effects from steroids will go away. After having been on steroids on average of twice a year over the course of my MS, I’ve learned what to expect and how to ride it out.

• There are serious side effects to using steroids over a long length of time—like months or even years. These include things such as bone density loss. As always, one needs to weigh the benefits against the positives when taking any drug.

Sometimes, steroids work for a person, and sometimes they don’t. And of course, all people react to a drug differently—both in response to the effectiveness and to the side effects.

All you can do is try. If it works, great; if it doesn’t, well something else will have to be tried to alleviate the problem.

www.DebbieMS.com

Does the Doctor Really Know What’s Best for You?

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“It’s your choice.”

June 18, 2013

I have seen doctors for almost all of the forty years of my adult life, and this is what I learned:

While I need to have doctors in my life as I deal with MS, I ultimately know what is best for me to do—not my doctors. I know my body and I will always make the final decision relative to how I want to be treated by a doctor. My doctors are there for support, knowledge, prescriptions, consultation and referrals. If I believe I am not getting from a doctor what I (or my insurance) is paying for, I will fire him/her.

It is a viewpoint other older MS veterans have shared with me.

Many MS specialist-neurologists are experts—they have seen numerous patients and are trained with knowledge. But I am an expert too, with a lot of common sense. I have talked with numerous people dealing with MS (both patients and professionals), and constantly research information about my disorder.

Each case of MS is different with regard to disability, rate and duration of relapses/progression, symptoms, response to medications and treatments, etc. It is a fact that that no two cases are alike. I believe I know my body best in terms of how I feel and how my body acts/reacts; this is information that I must note and share with my doctor.

I live with MS, monitoring and documenting many things regarding my own case, 24/7 every day–symptoms, side effects, triggers… A doctor looks at my case and evaluates me for only about fifteen minutes every 6-12 months. As one recent MSer complained to me, “I just wish a doctor would listen to my symptoms and not just do their little neurological test of pinch here, pock here and say nothing wrong here. This sucks.”

Recently, I spoke with a person with MS who was complaining how bad MS had been affecting her cognitive abilities. During the discussion, I learned the doctor prescribed her a sleeping pill, an anxiety pill, and a pain pill—all at the same time!! It was no wonder why her mental faculties were impaired. Where’s the common sense here?

Other patients receive scripts to treat two or three things at one time with no instruction to start them at different intervals. How would someone know what is affecting what, positively or negatively?

Since I am not on a DMD treatment, I choose not to get MRI’s. Personally, I don’t care how many lesions I have or how big they are because that by itself isn’t always reliable in terms of what to take, do, or how bad I am. For me, going for an MRI every six months is a waste of my time and money. But that is my choice and my decision.

And doctors are not always right. Doctors make mistakes or poor decisions as well. Maybe they are having a bad day, are overloaded, or were given faulty test results. Let’s face it—why do people get second or even third opinions before having major surgery, for example?

Truthfully, I like, need and want my doctors. Doctors have things I don’t have–the ability to write prescriptions, order tests for evaluation, and referrals for things like therapy or specialists. I use them to get these things. Also, I really do want to listen to their expertise and judgment, and consult with them about any course of action.

Now I do not have major cognitive issues that interfere with my judgment. But there have been times when I was distraught with anxiety or depression and I felt I didn’t want to make a decision alone. I asked the doctor if he was in my shoes, “What would you do?” I have enough trust in my primary professionals to follow their advice. In these situations, I also have a close family member or friend with me to listen and help evaluate the circumstances. Teamwork is good.

When I choose a doctor, I find one that has very high ratings and one that I am compatible with. It enhances my confidence when I make my final decision about a course of action.

I have been blessed to have two MS specialist-neurologists in two different states that were both opened-minded and respected my personal choices. They talked with me, not at me or down to me. They also recognize that I am the one living with MS and know my body best. However, “Two heads are always better than one” when evaluating anything, so I am open minded as well. And throughout the years, there were certainly good reasons to see and confer with my doctors.

So choose your doctor and your course of action wisely.

www.DebbieMS.com

 

MS: Disease Modifying Drug Therapies

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“Questions and Concerns”

April 5, 2013

On March 27, a news article stated “The U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS.”

This is the tenth DMD (Disease Modifying Drug) that has been approved by the FDA to reduce the progression and activity of the disease. It is also the third DMD approved in the past two years that can be taken orally in lieu of an injection, exciting many persons who have MS.

The National MS Society and most neurologists, are strong proponents of these DMD’s, and recommend starting one as soon as a diagnosis is made. “Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration,” states an article on the internet front page of the National MS Society today.

Is it the best course of action to take for everyone? Here is a list of questions/concerns to think about when deciding whether to use a disease modifying drug:

1. Is it wise to start a treatment that was just FDA approved (or just approved in the past couple of years), without knowing the long-term side effects?

• None of the DMD’s decrease the relapses 100%; most decrease them in the 28-68% range. Is this enough to justify the possible long-term effects of possible liver, kidney or heart damage? Built up resistance? Other serious health implications? What if the person is only a teen or very young and has decades of life ahead of them?

• The biggest fear of having MS is the loss of mobility, although there are numerous other symptoms of MS that are disturbing. This fear is exemplified by slogans, ads, pictures and more. Yet, for years the statistics estimated that 25% of MS patients end up using a wheelchair during their life. After living with MS for 32 years, I am one of those people in a wheelchair. Maybe this sounds stupid to someone, but I personally feel that I would rather manage living in a wheelchair than with a damaged liver.

• What happens if the DMD is found to not work after all? News came last July that an extensive study suggests interferons, the basis for many DMD’s, did not reduce MS progression. This news was alarming. “Can this be true?–after all those years of injections, tests, office visits, side effects, dollars spent….” were comments expressed in social media.

Within the above-mentioned article, Bruce A. Cohen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and Chair of the National MS Society’s National Medical Advisory Committee states “As with all newly-approved treatments, we will learn more about the benefits and safety of Tecfidera over time.” Hmmm—does this comment concern you?

2. Does the decreased rate of 28-68% of possible reduced relapses warrant the short-term side effects and other things people experience with DMD treatment?

• Yes, treatments do have side effects, and again they vary widely for each individual. Nausea, flu-type symptoms, dizziness, site-injection soreness and fatigue are some but not all common complaints. One has to ask and decide for him/herself if the treatment is worth it; for example, feeling like you have the flu 1-2 days a week after an injection. Or putting it another way, which is the lesser of two evils? In addition, I hear and read so often in social media about how frequently MSers change their DMD because of the side effects, or that it is not working in slowing the progression.

• DMD’s require much monitoring–doctor visits, MRI’s, clinic visits… The therapy adds more cost, are time-consuming and exhausting. Fatigue—a very disabling symptom 90% of MSers experience—is compounded.

• Taking a DMD is a difficult regime. It adds physical, emotional and mental stress on the body. These could lead to depression, and more fatigue. It is possible that the stress of taking a DMD could nullify any possible benefit of it for some people.

• Treatments are expensive. The price tag on this new treatment is $55-60,000! While some patients get financial assistance through the drug companies or being a clinical trial participant, many others pay thousands of dollars annually out-of-pocket. I’m becoming quite cynical of pharmaceutical companies when I see their expensive ads, exhibits and give-aways at events.

3. Should a newly-diagnosed person start a treatment without first evaluating how aggressive or mild their disease course is?

• Up until 1996, a type of MS included a “benign” course. Up to 20% of MS patients had this type of relapsing-remitting, in which few relapses occurred that would go away and leave very little or no residual damage or disability. Symptoms were primarily sensory, but could include others such as motor or bladder disturbances. The term is no longer used, and this type is now included with the relapsing remitting type.

The point is that many persons diagnosed with MS could have a mild case, and how would they know if they started a treatment immediately after diagnosis? In addition, a newly-diagnosed person is usually quite stressed and often prescribed other drugs to relieve symptoms or the relapse. The waters become muddy in knowing what is causing what, positively or negatively, when everything is happening at the same time.

• A newly-diagnosed person should take notes and keep a journal about their symptoms, reactions to any drugs given for a symptom or a relapse, etc. to learn about their own case of MS. Delaying a treatment of several months will make little difference in the overall course of the MS. Not taking care of oneself, feeling pressured by doctors/others, and chronic stress can affect the MS as much as not taking a DMD.

• Meantime, research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc. Use common sense, and remember that this is your body and ultimately your personal decision.

4. To expand on #3 above, has both the doctor and the person with MS evaluated his/her course for a reasonable period of time before starting a DMD?

• Each person with MS has a different course of progression, relapses and symptoms. No two cases are alike. Patterns of these factors will emerge after awhile. What are the frequency, severity, duration and residual of a relapse? Is the relapse being defined properly? MS is sensitive to many things, and several days or even a week of intensified symptoms does not necessarily indicate a relapse.

• The number and location of lesions being used as the sole indicator of disease progression can be leading. New and old lesions cannot always be distinguished and lesions showing on one MRI may not appear on the next one.

5. Do doctors honestly know if a slowing of progression is from a DMD? Couldn’t less lesions result from the natural course of the disease itself or any health/wellness program a patient is following?

• The truth is, DMD’s are difficult to monitor accurately. And it is worthwhile to note that DMD’s are not meant to make a person feel better.

6. Why isn’t there more emphasis on managing MS from a non-medicinal standpoint? Why are drugs pushed as the first line of defense?

• Since there currently is no cure for MS, the objective is to reduce the amount and severity of relapses to prevent further damage to the central nervous system until a cure is found. It is common sense that a comprehensive therapeutic approach should be taken to treat MS.

• There is no single drug to make MS go away. While drugs play an important role in helping symptoms, relapses and the course of MS, there are so many non-medicinal things a person can do to both manage and control it as well without side effects. Examples include:

– Taking care of oneself with proper diet, exercise, sleep, low stress…
– Not getting sick or infections since MS is an autoimmune disorder.
– Alternative therapies, such as Yoga, Pilates, Tai Chi, massage…

There are many MSers who use this approach successfully to manage their MS, while taking drugs for symptom relief or relapse treatment (corticosteroids) as needed.

Sure, I want a cure or an effective treatment just as much as the next person, but I have always weighed my options carefully. I’m only 57 and I have many of years ahead of me. So I have to make sure I do my research and ask questions in order to make the right choices. Shouldn’t everyone?

www.DebbieMS.com

Office Visits with your Neurologist

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“Good Advice for Being Prepared”

December 10, 2012

Not having enough time with your neurologist or feeling that you didn’t get your questions answered is a common complaint by patients today. Often we blame the doctor and his/her office but there is the other side of the story—the doctor’s!

Be Prepared!: How to make the most of office time with your neurologist… is an article worth reading. Written by Avitzur, Orly M.D., M.B.A., it was printed in the current issue of Neurology Now—the American Academy of Neurologists Magazine for Patients and Caregivers.   http://bit.ly/QSp1uH  I’m taking the liberty of sharing this via by blog, since you are my friends I am given the option by them to share this with my friends :).

Finding a neurologist that you are comfortable with, one having high credentials/reviews, and one that has a specialty in your particular chronic condition is essential. After you read this article, ask yourself: do you do this before your visit, and does the doctor respond in the way this doctor suggests?

For those of you not familiar with the magazine Neurology Now, you take a look at it online and subscribe to it for free. While it addresses many neurological disorders, I have found useful information relating to multiple sclerosis for myself. And other things like Parkinson’s disease that my friends have…

www.DebbieMS.com

Managing MS vs. Living with MS

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“Are they the same thing?

October 1, 2012

Is there a difference between Managing MS versus Living with MS? Yes and no. It depends on who you ask.

On September 24, The NPR Diane Rehm Show aired “Diagnosing, Treating and Living with MS. A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

My first response after listening to the show was that the doctors in the discussion did not truly address “living with MS.” The responses were dominated by treatments and medications that patients should take. Questions that were asked about symptoms like spasticity and fatigue or lifestyle activities like diet, stress and exercise were glossed over with comments like “research hasn’t yet shown…” or reverted back to the necessity of getting on a treatment ASAP.

I have had MS for 32 years, and while I think the treatments available and new ones on the horizon are exciting, I would like to point out that there are so many effective ways to manage MS daily that should be understood that are non-medicinal.

Management of MS should be a two-pronged approach: medicinal AND non-medicinal. A person should not only rely or be concerned about drugs to solve their problems with MS. It’s not enough to just “live with it” and think that having an injection or popping a pill will magically take away or minimize the problems MS burdens a person with.

There are numerous things an MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease without the drugs. But this all takes knowledge, support, work, dedication and discipline. There’s no easy way out of it, but trust me, it works!

First, a healthy lifestyle should be maintained to prevent illness, stress, etc. that can help minimize further relapses/damage to the CNS. This means keeping your resistance up and body healthy through proper exercise, diet, stress management, sleep/rest etc. Illness/infections often trigger a relapse by activating an immune system response with subsequent damage to the CNS. Extra precautions to prevent accidents/falls (like using disability aids) would help accomplish the same thing.

Second, there are many things a person can do to manage symptoms. For example, I suffer with much spasticity; by doing daily stretching/exercising, while taking baclofen (a medication to reduce spasticity), the stiffness and tightness is greatly reduced for me. Another example is the importance of learning good bladder management from a neuro-urologist. Eighty percent of persons with MS will suffer from a bladder issue at some point. Putting up with a leaky bladder by wearing pads is not only distressing, it is dangerous. Urinary tract infections (UTI’s) are common and can lead to complications and undesirable consequences.

Understanding the sensitivity of MS to so many factors that intensify symptoms can enable a MSer to take certain actions to calm their symptoms. A prime example is the negative effect that heat has on symptoms like fatigue, endurance, balance… One can learn easy ways to counteract it quickly by using a cooling vest, ice packs, drinking ice water and taking a cold shower. Fatigue—the hallmark symptom of MS that affects 90% of MSers—is another symptom that can often be managed by frequent resting, lifestyle changes, support from others…

Alternatives therapies have helped physical, emotional, and mental issues for many, many folks with MS. These things include yoga, trigger-point therapy, pilates, deep breathing, tai chi, reflexology to name some of them. Finding things to make a person feel better goes a lo-o-o-o-ong way. Some things work for some better than for others, but how do you know if you don’t try them?

After the Diane Rehm show was over, the doctors continued to answer questions submitted by people. Dr. William Shaffer, an attending neurologist who also has lived with MS since 2002 had this to say in response to a couple of off-the-air questions:

“The disease modifying medications do not directly help with symptoms in MS. At the same time, if the disease is being modified with a proper medication, sometimes people do feel better with their symptoms. However, there are many medications/management for the many symptoms we as people with MS can experience.”

“I don’t know any specific numbers on people who didn’t take medications and how they are doing. If you look at it like this, these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better.” I told them that the medications are to keep from getting worse and not to make one better.”

Finally, one of the doctors had this remark: “We encourage patients to really think about lifestyle issues, to maximize their activity and exercise, and also to maximize healthy diet, because we now know those things do impact the amount of residual disability people have.”

I wish that comment had been made and talked about during the show.

So if you asked me if there is a difference between managing MS and living with MS, I would respond “yes!” Managing MS should be an integral part of living with MS. I know many people who have had MS for 20-30+ years and I know they would respond to this question the same way.

But the opinion of the person with MS is what ultimately matters. Do you want to just live with MS, or do you want to take some control and manage your MS while living with it?

The choice is yours!

For more info about me and what I am talking about, please go to www.DebbieMS.com

MS Treatments

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“What to Take–What to Do?”

August 6, 2012

There is no cure for MS. But there are options available to treat the symptoms, relapses and the course of the disease.

To keep things simplified, there are three groups of treatments, all with a different purpose: Medications, Corticosteroids, and Disease Modifying Agents.

Medications

These are used to treat the symptoms of MS, and the use can be short or long term. They minimize the intensity or effect of symptoms so the quality of life and daily function is more manageable. Examples include antidepressants for depression, baclofen for spasticity, Ditropan for incontinence and so forth.

Corticosteroids

Corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). The administration of these drugs is high dosage over a short term (3 days to several weeks).

Disease-Modifying Agents (DMA’s)

Disease-modifying agents (also known as DMD’s—disease-modifying drugs) reduce the progression and activity of the disease. The FDA has approved ten of them now, and much research is occurring to continue to find more. Most of them are for folks who have the relapsing-remitting form of MS, or for those who have secondary progressive disease who continue to have relapses. They are given regularly mostly by injection over the long-term.

Most people with MS have used drugs in at least two of these categories. Some work for some people and some don’t work at all for others. If a drug is tried and doesn’t work, then something else can be tried. Every persons responds to drugs differently.

Medications and Corticosteroids have been tried and used for decades. Disease-Modifying Agents started becoming available in the nineties. Today, as I participate in online discussions and forms, it seems that almost everyone with MS is on one of these. Patients are strongly advised to get on one as soon as possible by neurologists, and the MS Society.

But taking DMA’s is a difficult regime. There are side effects, require much monitoring (doctor visits, MRI’s, clinic visits…), and they are expensive. While some folks get financial assistance through the drug companies, being a clinical trial participant, etc. many others pay thousands of dollars annually out-of-pocket.

And then the recent news comes on July 17th that a “Study Suggests That Interferons Did Not Reduce MS Progression”.

WOW! Can this be true? After all those years of injections, tests, office visits, side effects, dollars spent…. Now what? And what should a newly-diagnosed person do now about starting interferons?

I have had MS for 32 years and never took a DMA for various reasons. That is my personal decision. Throughout the years I have taken medications and steroids to help me with both symptoms and relapses. However, I would never tell any one not to take them. That is their personal decision.

So, what should one do about the recent news about interferons?

Whenever I have considered any medication over the years I followed these steps and offer them to you for your own consideration:

1.) Make sure you research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc.

2.) If you are on a drug, are the benefits outweighing the risks?

3.) There is no magic pill or injection to make MS go away. There are many other things someone can do to manage MS effectively to complement any drugs you are taking. This includes health and wellness (exercise, sleep, stress management…) and alternative therapies (massage, yoga, pilates…)

4.) Doctors aren’t always right. Persons with MS know their bodies best and should have the final say.

Take your time with making a decision. A delay of several weeks or months will make little difference in the overall course of your MS.

It’s common sense, your body and your decision.

www.DebbieMS.com