MS Archive

8

Another Day, Another Drug

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“What can we take on trust in this uncertain life? Happiness, greatness, pride — nothing is secure, nothing keeps.” ~Euripides

I am changing my MS medicine after having a recent consultation with my medical team. (By the way, I only have one doctor but saying medical team makes me feel important.)

The last time I was in the hospital, the doctors executed an MRI. I am secondary progressive and my current neurologist has not ordered a routine MRI in a while. Personally, I think it’s because there are no drugs approve specifically for progressive patients. When my doctor received my results from my hospital visit, he quickly ordered another repeat MRI because he saw something abnormal.

I was worried and my fears came to fruition when he informed me I had enhanced lesions on my brain.

He suggested a medication change and gave me a few days to do some research and think about it. The most surprising thing I learned was the new maintenance medication he suggested is also used to treat certain types of cancer.

A couple of days later, I agreed to the treatment and set up my first infusion session.

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I reported to my local hospital’s infusion room and I was there from 8AM until 5:30 PM. Yes, 9 hours! The medicine is administered through IV infusion. Luckily, it is only once every 6 months. Besides being bored, everything went smooth.

Changing treatments is routinely done in multiple sclerosis. I know many people who have been on various drugs. This is especially true for those who have a more progressive form of MS. But I don’t know of many MS patients on this particular treatment. That worried me, but I still pressed forward. I just really hope this works because the whole changing medicine again thing has taken a lot out of me.

24

The Fall Girl

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“Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment.” – Will Rogers

Saturday night, while taking a shower, I fell. The weird thing is, I was sitting down when it happened. I was on a bench in my shower washing myself when I lost my balance, tipped side ways and ended up face down on the tile floor.

The pain was incredible. I screamed and within seconds my husband rushed in to help me. He asked me if I was all right. I wasn’t sure so he sat me up and inspected me for damage.

I had cuts on the inside and outside of my bottom lip. And yes, blood was flowing and quickly filled my mouth. I felt a little lightheaded but the feeling was fleeting. As I sat on the floor, I ran my tongue around in my mouth. I could feel something was out of place. I glanced around the room and saw what looked like a tooth next to the sink. Before I could panic, my husband instructed me to smile. It revealed that I had chipped my front tooth.

As bad as that sounds, besides the pain, I felt reasonably well for such a severe fall.

Over the years, I have taken many precautions in my daily life to prevent falls. So I thought I was fairly safe. But wow, this took me by surprise. For goodness sake I was sitting down! Who falls while they are sitting?

I realize the busted lip and chipped tooth can be fixed. So I feel fortunate and grateful to be all right. But my memories of the pain from that fall will stay with me for some time.

NicoleTooth

11

Living On The Edge

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“Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I feel as if I’m slipping into depression. I know the signs. Not only because I’m a nurse by profession but also because my own father has dealt with it the majority of his life. Over the years, he’s come a long way. Of course, if you ask my mother, she may have a different story to tell. She’s the one who has to live with him everyday.

So, I have been proactive about this slide down hill into that unforgiving black hole. I returned to my psychiatrist. I’m trying to avoid sleeping all day. And I started reading again.

What made me even realize I may be having a problem is my support group leader asked the question to everyone, “What do you do to improve your quality of life?” I personally had a list of answers, which included therapeutic horseback riding and visiting the local gym as often as possible. But these things don’t always work because when it’s raining there is no horse back riding. And here in Louisiana, it’s always raining. Plus, sometimes I just cannot make it to the gym because of other obligations or I’m just too tired.

And although I have my husband, I just get plain old lonely. It seems as if the lives of my friends are rolling along smoothly. While I’m stuck, stuck in the muck of multiple sclerosis. And it stinks.

I haven’t been doing the things that I usually enjoy. For example, it took a lot for me to even blog today. I spend a lot of time resenting those around me that are physically able-bodied. This is wrong, selfish, and unhealthy for me. And I know this. But that’s how my mind works when I’m living on the edge of depression.

8

Biogen’s PLEGRIDY

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The Food and Drug Administration (FDA) approved Biogen Idec’s multiple sclerosis drug Plegridy as a treatment for adults with relapsing forms of MS or RMS. This encompasses people who experience periodic MS attacks, such as those who have relapsing-remitting MS or secondary-progressive MS with relapses.

The new drug was green-lighted based on the results of a 2-year long global ADVANCE study. The research included 1,516 people with relapsing forms of MS. It showed that PLEGRIDY reduced annualized relapse rates at one year by 35.6% in patients getting injections every two weeks and by 27.5% in those on four-week dosing compared with placebo. It met all primary and secondary endpoints by significantly reducing disease activity including relapses, disability progression and brain lesions compared to placebo, and showed favorable safety and tolerability profiles at one year.

Similar to Biogen’s multiple sclerosis drug Avonex, PLEGRIDY belongs to the interferon class of medicines. But unlike Avonex, PLEGRIDY has an extended half-life, allowing for a less-frequent dosing schedule. It is dosed once every 2 weeks instead of once per week.

PLEGRIDY is administered with an autoinjector or a prefilled syringe subcutaneously instead of intramuscularly. This means PLEGRIDY is injected under the skin with a smaller needle, which can be less painful.

Biogen expects PLEGRIDY to eventually replace its older best seller Avonex, which has compiled global sales of more than $1.5 billion in the first half of this year. They also want to take market share from other rivals even as overall sales from the class declines with the increasing popularity of oral treatments. The company said it would continue to support Avonex for patients who are comfortable with the treatment and not looking to switch.

The most common side effects to PLEGRIDY are injection site reactions, flu-like illness, fever, headache, muscle pain, chills, injection site pain, weakness, and joint pain.

PLEGRIDY is expected to be available by prescription in mid-September 2014.

So far, the news about PLEGRIDY seems very promising. I think it’s encouraging to have additional treatment options available. Too me, PLEGRIDY sounds like a new-and-improved version of Avonex. It’s especially great that the injections are once every two weeks.

The question is, overall what does this mean?

Does the development of new drugs like PLEGRIDY bring us closer to a cure?
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*Source- BIOGEN IDEC’S Press Release- Friday, August 15, 2014 6:32 pm EDT http://www.biogenidec.com/press_release

15

Beat The Heat

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“What dreadful hot weather we have! It keeps me in a continual state of inelegance”. ~ Jane Austen

It is incredibly hot this summer. I hear people complaining about it all the time. Nevertheless, they all still seem to be able to go about doing their daily task. For them, it’s basically an annoyance or at the most, it presents some discomfort. For me, it has way more damaging effects. As soon as the sun’s rays hit me, it sucks every ounce of energy right out of my body.

At first, I thought heat affected everyone with MS in the same negative way. But I see news stories of people with multiple sclerosis running marathons and participating in bike events. I find that incredible! I can barely go outside for 10 minutes without wilting in the sun.

How are they doing that? Am I in the minority?

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I have a cooling vest that is 5 years old. It helps, but not for very long. My friend, Dave Bexfield from ActiveMSers, suggested I get a new one. Cooling vest technology has improved over the years and there are a larger variety of styles available as compared to the recent past. He recommended a couple and I chose the one that best met my needs.

That was great advice because using my new cooling vest has really worked for me. Besides just staying in the house, it’s pretty much the only way I can think of to beat the heat.

So, I need some help. What’s the secret?

How do you deal with the heat?

24

Sunshine And Rainbows

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“But better to get hurt by the truth than comforted with a lie.” ― Khaled Hosseini

Yesterday, after a doctor’s appointment, I got in my car and the radio was playing “Happy” by Pharrell Williams. I really like that song. Hearing it makes me feel so good.

The next song to play was “Rolling In The Deep” by Adele. I’m married but I can still relate to its “lost love” inference.

The melancholy message of “Rolling In The Deep” is totally opposite from the “Happy” song. Nevertheless, I love them both.

I see my blog as comparable to that radio station’s sequential music programming. Consequently, sometimes it’s happy and sometimes it’s sad.

Recently, I received a few comments and emails asking me why my posts are so negative. For those people that asked, I’ve decided to answer them here.

I didn’t realize so many of my posts were perceived as negative. I went back and looked and from my count most aren’t negative. They just reflect my life. I write about my journey living with MS. In doing so, I chronicle my experiences and feelings. And just like that radio station’s playlist, sometimes I’m up and sometimes I’m down.

Unfortunately, my life is not a Hallmark card. It’s not always sunshine and rainbows. If I pretended it was, this blog would be full of lies. I promised myself that my writings will only tell the truth and sometimes that truth is ugly. So if I can’t always see the bright side of living with a chronic debilitating disease, please forgive me.

I am just like everyone else, I have my good days and I have my bad days. And I’m happy to say that my good days out number my bad.

16

Attack Of The Clonus

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“When we meet real tragedy in life, we can react in two ways – either by losing hope and falling into self-destructive habits, or by using the challenge to find our inner strength.” – Dalai Lama

With my MS, I not only battle the sickness of the disease but also it’s side effects. My latest side effect is sore legs.

Why is that, you might ask? Well, its because I have clonus.

Clonus is a series of involuntary, rhythmic muscular contractions and relaxations. Unlike small, spontaneous twitches, clonus causes large motions that are usually initiated by a reflex. It is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases, accompanied by spasticity.

So when you look up clonus in the dictionary you see a picture of me.

It’s weird because, despite not walking, the clonus causes my legs to continuously move. When my foot is placed in a certain position, my leg jumps around like a jackhammer. I hate the vibrations. They jerk me all over the place until I find the right position that will not set it off.

When it’s happening, it’s like there is something in my body that’s alive and moving around. My legs uncontrollably bounce up and down and by the end of the day they are usually sore and tender.

Having it isn’t the end of the world; it just bothers the heck out of me.

Do you suffer from clonus or have at least heard of it?

If so, how do you deal with it?