Multiple Sclerosis Archive

Biogen’s Tecfidera (BG-12)

– 20 May, 2013Posted in: chronic illness, health, MS, Multiple Sclerosis, National MS Society

Guest Post 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.

Post provided by Healthline

Tags: BG 12, biogen, FDA, Food and Drug Administration, health, healthline, MS, MS pill, multiple sclerosis, National MS Society, relapsing remitting, Tecfidera, treating multiple sclerosis

The Other Side

Nicole Lemelle

– 13 May, 2013Posted in: Acceptance, chronic illness, Depression, health, Moving forward, MS, Multiple Sclerosis

“There is no need to suffer silently and there is no shame in seeking support.” – Catherine Zeta Jones

Sometimes I need help navigating this maze I’m living in. At times I feel lost. Lost in the unknown. Lost in a realm of uncertainty.

Sometimes I need help with things you can’t see. Things no one can see. Feelings I barely know are there. When these feelings manifest they can take over my life. Causing not only anger and resentment but also an unexpected sense of physical and mental pain. I try my best to fight back the pain, but sometimes it can be overwhelming.

I’m just so tired of MS right now. Everyday something is being taken from me. My vision, strength, and cognition are all up for grabs. I just want to escape.

But, how do you escape from the demon when it lives inside of you?

Still, I know that somewhere in my sadness there is happiness. I know this because some days I feel rich even in the midst of my pain. I have discovered that happiness comes from within. On those days that I find happiness, the pain disappears. I just need help reaching that point.

I need help getting to the other side of the pain.

Tags: catherine zeta jones, cogntion, Depression, fatigue, help, MS, multiple sclerosis, sadness, strength, support, vision

MS and Relationships

Nicole Lemelle

– 6 May, 2013Posted in: Acceptance, Authentic Happiness, chronic illness, health, MS, Multiple Sclerosis

I’m sure we’ve all felt this way in one way or another. You don’t have to have a chronic disease to feel this way. I want to be all that can be for those whom I love around me. Due to one excuse or another I find that I am not.

I just realized, I’m not the big sister I want to be. I may be falling short. I’ve been so wrapped up in what’s going on with me.

You know I rely heavily on my husband, Tommy. If you follow this blog you also know that my parents are more involved in my life than I’d like to admit. But I don’t often talk about my dearly beloved little sister. She’s six or seven years younger depending on the time of year. She’s taller than me and she has an adorable 10 year-old son. Actually, she was taller than me long before I was in a wheelchair. She’s opinionated and feisty. Even family members tend to think she’s the oldest. She always owns the room with her bigger than life personality. I admire that.

I worry that I’m not giving my “little” sister the attention that she deserves. People I trust have rightfully called me selfish in the past. I have to consider that I’ve let my illness cover up the rest of me; including my fragile relationships. My sister and I have the same ups and downs as most siblings; I may just scrutinize ours a bit more.

I have a lot of work to do in living with MS and letting people in at the same time. I know that who I am inside, multiple sclerosis cannot touch… unless I let it. I know that she loves me too, despite MS. As a matter of fact, I’m sure that my disability matters more to me than her.

So, as I sit here anxiously awaiting her short visit from out of state, I cross my fingers and hope that all goes well.

I can’t wait to see her!

Tags: chronic illness, MS, multiple sclerosis, sisiter

MS Milestones

Nicole Lemelle

– 29 April, 2013Posted in: Acceptance, chronic illness, Depression, health, Independence, Moving forward, MS, Multiple Sclerosis, Sadness, Walker, Walking, Wheelchair

Today is different. I’ve been having increasing difficulty typing. I previously promised myself that if this ever happened I would use assistive devices available to me. That is, no matter how humbling it may be. Because like it or not I’m not the same woman I used to be!

Now, today is different because I’m using dictation software in order to complete this post.

I guess you can say it’s a milestone of sorts. In fact over the course of the last few years every time I had to start using a new device I considered it a very big deal. Whether it’s my cane, walker, wheelchair, scooter or power chair, I had to accept my new reality. Or as we say every year it seems to be something, and here once again is one of my new normals. To be honest though, I saw this one coming. More often when I’m tired, I’m require help to do normal, easy, simple tasks; for example buttoning my shirts or putting on my own deodorant or sometimes even feeding myself! Thank God for my husband and my mom.

Fortunately, with this computer program I simply speak into the microphone on the computer and it in turn types what I say. I really, really didn’t want to use it or anything else. It was hard to accept any kind of help at first. But, I figured in order to keep with what I preach… I had to. Writing has become my outlet from MS. I’ll be damned if I let multiple sclerosis shrewdly yank that away from me too.

At first for me, like many others, multiple sclerosis meant only blurry vision. But look at me now. I imagine I’m going to accept my new typing limitation and move on to embrace this dictation software on my computer. I may even be drawn to purchase brand name fancy software. Who knows?

I’m even having problems using my computer mouse. My hands just will not listen to me. I did however read about a device that moves your mouse with your eye movement.

Maybe in a few months I’ll be ready to tackle that one.

Tags: computer program, hands, loss of vision, MS, multiple sclerosis, scooter, typing, vision, walker, walking, wheelchair

The CCSVI Option

Nicole Lemelle

– 22 April, 2013Posted in: chronic illness, Independence, Moving forward, MS, Multiple Sclerosis

I remember years ago when I was first diagnosed my neurologist confidently told me we’d probably see a cure in my lifetime. Now after thirteen years, I’m beginning to doubt him.

That’s the main reason I’m consistently looking for different options. I have always been told and believed that multiple sclerosis was a neurological disease. Well, there has been increasing talk that it’s in fact a vascular problem. I’m not going to pretend to be well versed in this, so I’ve pulled the following from The CCSVI Alliance website.

“CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis.

As a result of these venous abnormalities, the blood flow rate through the central nervous system back toward the heart may become slowed, and blood may reflux back toward the brain and spine. People with CCSVI have one or more blockages of the veins that drain blood from the central nervous system.”

The doctor who came up with this believes that by clearing the obstructions symptoms will be alleviated. This is similar to procedures commonly done in the heart.

Please understand this is an extremely simplified explanation I’m offering here. That’s exactly why I attended a free Doctors’ Roundtable: Exploring CCSVI & CSF in Neurological Disease this past week in New Orleans. It was hosted by The CCSVI Alliance. I was hoping that the event would provide a clear idea of what to do, but I must admit that I am as confused as ever.

I would love to hear what you guys think about CCSVI.

Tags: blood flow, CCSVI, central nervous system, Chronic Cerebrospinal Venous Insufficiency, MS, multiple sclerosis, Neurological Disease, neurologist, treating multiple sclerosis

Fair-Weather Friend

Nicole Lemelle

– 8 April, 2013Posted in: chronic illness, health, MS, Multiple Sclerosis

Throughout our lives we all have experienced some of the best and worst in human nature. I never guessed that I would witness the worst in you. All relationships have ups and downs but you seemed to only want to experience the ups.

When things were going well I could not have asked for a better friend and I want to thank you for all the good times. And because of that I thought you were the best person in my life to help me through any tribulations that would come my way. But as soon as the first problem appeared you were gone. At first you checked out mentally. Then soon after you began to disappear physically. I thought our relationship was forever and you must have thought it was until it got inconvenient.

When I told you I was in pain you said it was in my head. When I could no longer dance you danced with someone else. When I asked for your help you were always too busy. I handed you the keys to my kingdom and you destroyed everything inside. Including my love, my hope and worst of all my trust.

I know it’s hard for people who don’t physically live with a chronic illness to understand what the loss of control feels like, but man whatever happened to empathy? You actually treated your dog better than me.

And what hurt the most were all the condescending comments like, “All you do is lay around” and “Don’t be so lazy”. I think your favorite was, “Come on, it can’t be that bad”.

Why would I fake symptoms?

When I pointed out how you were treating me, you of course blamed me for the way you acted. You actually made me feel bad for having a disease.

But guess what? I forgive you. That’s right, I forgive you!

Even though you probably think you did nothing wrong.

I still forgive you.

Tags: chronic illness, friends, MS, ms sucks, multiple sclerosis

Twists and Turns

Nicole Lemelle

– 1 April, 2013Posted in: Bladder Issues, health, Independence, MS, Multiple Sclerosis, Sadness, Walker, Walking, Wheelchair

My dad, who had a stroke a couple of months ago, shared a card with me that at the time we both could relate to. It said, “Do not worry that you’re not strong enough to make it before you begin. It’s in the journey that God makes you strong”.

The card also reminded me of a fellow MSer I met in passing. The encounter was a long time ago when I was still walking on my own. She was admiring how much physical ability I possessed. Then she lowered her head and confided in me, “Nicole, I can’t even lift myself off the toilet.” I subsequently squeezed her hand, offered a genuine show of support then we exchanged contact info and departed.

Now, years later, as I sit in my scooter I’m probably closer to her than she will ever know. I no longer have her info so I can’t reach out. Besides, what am I going to say? “Hey I can’t lift myself off the toilet anymore either!”

I would’ve never thought I’d be here today. It’s been a long journey, but Tom (my husband) and I have made it through. He hears me racing to the restroom and just meets me there. He saves me from actually having to ask for help. It’s a very humbling experience. Actually, it’s mostly in the mornings that I’m the weakest.

How does one prepare themselves for this?

This journey has made me into a different woman. I’m weaker yet stronger in more ways than one. Somehow my dad, Tom, and I are making it through despite all the wired twists and turns…but certainly not on our own.