National MS Society Archive

175

Biogen’s Tecfidera (BG-12)

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Content provided by: Healthline

In late March of this year, the U.S. Food and Drug Administration approved a Biogen Idec drug by the name of Tecfidera (dimethyl fumarate or BG-12) for on-label treatment of relapse-remitting multiple sclerosis. This long-awaited decision comes on the heels of research trials showing significant reduction in the number of MS relapses, the rate of disease progression, and the appearance of new lesions on MRIs among patients taking the pill.

The medical and pharmaceutical communities expect this FDA approval to make Tecfidera a blockbuster drug. According to a story in the New York Times, annual expected sales of this drug are expected to grow beyond its current market of over $8.5 billion in the U.S. alone. Canada recently gave it a seal of approval as well, and the drug is currently being examined for on-label use for MS in the European Union and Australia.

Are You a Good Candidate for Tecfidera?

Whether or not you could benefit from Tecfidera will depend on where you are in the MS diagnosis process. If you already have a confirmed diagnosis of relapse-remitting MS, your doctor can tell you if you may be a good candidate for the drug. Tecfidera is not approved for official treatment of forms of MS other than relapse- remitting.

Tecfidera treatment may be a helpful drug for initial treatments in newly diagnosed individuals as well as people who have had MS for many years. Furthermore, Tecfidera doesn’t have to be anyone’s drug of “last resort”—it can be used from Day One, meaning the newly diagnosed don’t have to go through a slew of other meds before giving Tecfidera a try.

Some of the perks of the drug are its simple treatment form (an oral pill twice per day) and its lack of serious side effects. At this time, negative reactions to the drug seem to be rare and relatively mild compared to the effects of other MS treatments; most negative side effects (like flushed skin or diarrhea) tend to go away after a few weeks on the treatment. As an added bonus, the FDA doesn’t list any contraindications for the drug, although some physicians may delay or stop treatment if the MS patient has a serious infection or very low white blood cell count.

No matter where you are in terms of MS progression, Tecfidera could be a promising treatment to help you avoid MS attacks. However, individuals who are unable to comfortably swallow a pill must discuss this problem with their doctors—Tecfidera shouldn’t be crushed or chewed. The pill can be taken with or without food and drink and is otherwise a pretty low-maintenance treatment course. MS patients will start with a lower dose (120mg twice a day) and bump up to a higher “maintenance” dose (240mg twice a day) after the first week.

Just an FYI About Tecfidera

So far, the news about Tecfidera sounds like very promising for thousands of MS patients. Just to make sure you are aware of the cynical positions on the drug, however, I’ve summed up a little list of the common critiques:

• A form of Tecfidera used to be used as a spray on couches that often caused skin irritation when people sat on the furniture. (Note: It has been reformulated and has very good tolerability in patients taking the drug for MS and psoriasis.)
• No one knows how or why Tecfidera works. (Note: This is more common than people like to think when it comes to meds. Suffice it to say the experts believe it calms the immune system and has high levels of antioxidants that may protect the nervous system.)
• The drug should be more thoroughly compared to other treatments for relapse-remitting MS. (Note: The drug has been shown to far outshine placebo treatments, but thorough comparisons to other MS drugs or therapies are still needed; the ease of the drug regimen and its lack of serious side effects are already high in Tecfidera’s favor, though.)

Whether or not you choose to pursue Tecfidera as your preferred MS treatment should be decided together with your healthcare provider. No matter your decision, let’s be grateful that Tecfidera represents progress in opening the drug market to the exploration of more effective (and more livable) treatments for MS.

Content provided by: Healthline

30

Where’s The Help?

I recently spoke to a newbie MSer. She reached out to an international MS organization for help early in her disease process and was subsequently declined assistance by the group. I was very surprised to hear this, especially because it is a celebrated organization. I know this had to be devastating for her. Not just that she was rejected in her moment of need, but that the news came at an inopportune time. This was right after her diagnosis, which is probably the most vulnerable, depressing, and confusing time for a person living with Multiple Sclerosis. She vowed to never support that MS group again. I thought her reaction was a bit hasty but at that moment, while dealing with such a heavy blow, her emotions were probably all over the place.

This isn’t the first time I have heard such strong distain for MS organizations. I have communicated with a number of people who are totally against any and all MS associations. I’ve heard such things as:

-Not enough money is going to the cause.
-They are co-opted by big pharma.
-Lack of tangible patient services and research endeavors.
-Marketing and branding drive them.
-Too much money spent on administrative and fundraising costs.
-They spend more time empire building than helping people.

Are these real reasons to distrust all MS organizations or have they spawned from conspiracy theories and cynicism?

I have found more support locally than on the national level. I even received help paying for school after being diagnosed. I received my “life saving” cooling vest from a notable MS group. Other times when I was told I didn’t qualify for assistance I obtained referrals to other support opportunities. I guess I have been one of the lucky ones to receive help from a few different MS organizations so my skepticism is pretty low.

I need to know, am I being fooled?

Are harsh feelings toward MS organizations common? Are most people in support of, against, or indifferent towards MS groups?

46

A Painful Lesson

It’s funny how our brain can sometimes play serious tricks on us. But there are just a few things we some how need to be reminded of every once in a while. In the midst of a personal pity party that I held just this morning I said to my husband, “I feel like I don’t have purpose.” He responded, “When’s the next time you go to the psychiatrist?”

This particular party was held after I woke up and had no place to be. It dawned on me that nothing seemed to depend on my presence. To be more accurate, I had no job to report to. You see the last career I had I held in high regards. Though I wasn’t a surgeon that saved lives, I took pride in my job. My life revolved around it. I guess I thought it gave me purpose.

Due to Multiple Sclerosis, I was forced to leave my career behind. So where does that leave me? What’s the appropriate amount of time I should bemoan its loss? Because at this point I haven’t worked or driven a car since 2009! You probably know that as I remind us both constantly.

I forgot that though I’ve exited the structured working world, I have still maintained my worth. Thankfully a good friend reminded me of that. Thank God for friends. I totally dismissed the advocacy work I’ve done with the National MS Society. I know I’ve affected lives with them. I also completely overlooked my impact here with this website! Something that started out as a safe place to go and vent has turned into so much more. You move me. You humble me. You give me purpose.

I’ve been taught to shy away from thinking that something outside of myself gives me purpose. Similar to the way I did with my former career.

Thanks for helping me learn that painful lesson.

59

I’m So Excited

I’m so excited!!!

I recently went through a free trial run of a technology that could help me with walking! Albeit, at this point it’s gonna have to be walking with a walker. I have less balance and stamina then I’ve had in the past. These days though walking around my apartment would be welcomed, so boy am I hopeful! Some would tell me to “calm down”(I hear that a lot more than I would like).

I know it’s risky to bet all my chips on black. I’ve been doing it for years. One of two things happen. Either I get what I want or I end up sobbing in the bathroom. The latter seeming to be far too common.

Paying for this latest treatment seems to be the question now. Insurance or Medicare being the obvious answer, but I heard Medicare doesn’t cover it and my other insurance already denied the claim last year. It’s that I finally got a chance to actually try it out. I just need to work on my balance issues. I wonder if physical therapy can address that? I guess first I need to concentrate on one thing at a time.

You see I always stumble on these things that I think will be absolutely life changing. The answer to all my problems. I get so amped up. So ready to dive in full force. I’ve been like this even before Multiple Sclerosis was in the picture. But at least I get it honestly from my father. Even my sister has it too!

The product representative said the MS Society offers grants to help pay for this walk technology. Before I apply for aid I need to get a prescription from my doctor and ask his opinion on the device.

Meanwhile, please forgive me if I seem anxious. It’s because, I’m so excited!!!

10

Make A Connection

If there is one thing I miss from my former lifestyle is my effortless capacity to create connections. I made numerous connections through work and social interactions. When MS entered my life, my ability to work was limited and public exchanges were slashed. I was not able to maintain the same level of links to the outside world. My life seemed to become more isolated. MS was truly killing my ability to make connections.

In 2009, I discovered that the internet was a great way to create and foster contacts. Before then, I never knew that so many people shared so much of what I feel and experience. And guys that is so comforting to learn. I am sure this is a mutually beneficial relationship that was spawned and for that I am grateful. I find reassurance in interactions with fellow MSers on various websites. For years I wished that we had a central place to congregate and share ideas. I just learned that the National Multiple Sclerosis Society has created a new way for us to network. It’s called MS Connection.

This is such an appropriate time for the National Multiple Sclerosis Society to usher in MS Connection because MS Awareness Week is starting March 12th. MS Connection is an online community that helps people make meaningful connections. This is one thing we need so badly because this disease is basically built on a foundation of disconnection that starts in our brains and spills over into our personal lives.

Check it out and make sure you look for me so we can make a true CONNECTION.

62

Denial, Hope, or Faith?

I recently finished my National Multiple Sclerosis blog entry. It will be available shortly. In the piece I encourage engagement among the land of the walking “well” even if it meant using assistive devices.

Just as I finished typing the last word of the entry a delivery from Medicare arrived! It was a scooter! Keep in mind, I was well aware of its impending arrival. In fact, I already own a bigger more robust power chair I used when my core strength was questionable at best. But, when I saw this scooter, my heart crumbled just a little bit. My first response was to resist it, because it seemed to mean I had given up on walking again. But, I hadn’t. It represented a conflict of interest for me.

I so want to walk again. I haven’t given up on it’s possibility. Is that denial, hope, or faith? I don’t know. I do know it hurts to even slightly give in to the concept of never walking again. My word, I’m only 36 years old! It’s been years since I have been able to walk unassisted, but it never gets any easier to accept. I mean I still mourn walking and I don’t think there is a statue of limitations where this is concerned. At the same time, I know things could be so much worst. Plus, I fear coming across as a hypocrite.

So, I was slowly able to turn things around by being grateful for what I can do. I remember when I didn’t even have enough strength to competently use a scooter! You would think I would see this as an improvement! NOPE, well not at first. But after recalling memories of my last exacerbation, I was able to usher in new found perspective. As corny as it may sound, though society deems me disabled this scooter will enable me! I once again can navigate amongst the land of the walking well! I can regain an inkling of my coveted independence! I can tackle those long aisles at Wal-Mart without having to wait 30 minutes for a free cart! I can go to the mall without Tom, my dear husband and caregiver. I will not have to be pushed everywhere in a wheelchair! That being said is reason enough to celebrate!

I plan to continue physical therapy, water aerobics, frequent our local gym, and use my walker inside the house. I plan to continue moving forward…just a little faster sometimes!

Once I was able to get my bearings and view this as a thruway to normalcy, I eagerly named my new scooter Thelma. Yes, from Thelma and Louise!

15

NMS Blog Post: MS Walls

I’ve been recently invited to write for the National Multiple Sclerosis Society’s blog! What an honor! They contacted me out of the blue. Apparently, they are friends of this site. Who knew?
My first post on their website can be found here. Its called MS Walls.

Please check it out and leave a comment! Thanks for the support.

Who am I thankful for? YOU!

Nicole