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Side Effects, part 2

The number of disease altering MS drugs has grown remarkably in just a few years and research is steadily moving forward to finding the best on the market, fingers crossed. Until that perfect combination of chemicals is found, we Warriors are destined to a life of being human guinea pigs. That is the only way we will ever make headway on this disease.

It is disheartening to think of ourselves as a species of vermin, but reality has been known to "bite". We can't let this get us down, though. Life is good as long as we believe so.

Currently MS Drug options for relapsing-remitting multiple sclerosis are:

  • Beta interferons. ...
  • Ocrelizumab (Ocrevus). ...
  • Glatiramer acetate (Copaxone). ...
  • Dimethyl fumarate (Tecfidera). ...
  • Fingolimod (Gilenya). ...
  • Teriflunomide (Aubagio). ...
  • Natalizumab (Tysabri). ...
  • Alemtuzumab (Lemtrada).
(I know there re others, but these seem to be the most used.)

My first drug was beta seron, a self-injection that stayed with me for nearly eleven years. I learned to stick myself and continued that routine until I could no longer find anywhere to place the needle. I had so many bruises on my body that moire than once I was pulled aside by concerned friends or co-workers and questioned about the possibility of domestic abuse. My son became so accustomed to his mother's needle use that he deemed my instructional VHS tape one of his all time favorite "movies".

When I decided to stop injecting, my disease was feeling pretty good. No exacerbations, no side effects (other than the multiple bruises); my energy was at a high and my life was not being interrupted too much with the antics of the MonSter. Typing those words, I realize the false positive of my mind set. Apparently the beta seron was doing its job. So, why did I stop a good thing? I was beginning to fear the unknown, the chemical influence on my body. Would't I be better off without that? I was a young mother, a professional educator, someone with a purpose in life that did not include multiple sclerosis.

"Well, well, well, little Missy," said the MonSter to the Lady with the Cane, "I'll show you."

And so it did.

And this happened:

Talk about the perfect day for a football game! September 3, 2004, promised to be a stellar day to be outside and to be a  Mountaineer fan. I dressed for the promised heat and was happy to wear my newest WVU shirt in celebration of opening day. I had decal-ed my fingernails with flying WVUs the night before and made certain to wear the perfect pair of Mountaineer earrings to match  my corresponding bracelet. My latest splurge had been on a pair of blue and gold trimmed New Balance tennis shoes. It wasn’t only a ball game day, I had a date for that football game. In the first time since my diagnosis I was going to enjoy a day without worrying about my disease or the ill effects MS plays on other people in my life. My three and half year old was with his Grammy and today was my opportunity to remember how it feels to have a social life. I know that may sound selfish and thoroughly self-serving, but I promise that I had been a very, very good girl since my divorce. I hadn’t thought about dating or having any type of relationship other than the one I enjoyed with my son. I tell him often that he saved my life. That, if not for him, I do not really know what would have become of me after discovering my disease. With him to care for, I had a purpose for plunging ahead, for staying involved in life, for wanting to enjoy my job, my church, and my life. That is not to say that I did not miss having a little adult fun from  time to time. My date was an old friend from the past and a colleague in the recent realm of divorce-hood. We shared some similar horror stories and really enjoyed one another’s company. I was happy that he asked me to share his season ticket with him. He seemed pleased to meet a female who appeared to understand AND enjoy the sport of American football.
My date knew about my MS, but did not totally understand the ramifications of the disease. It was too early in our relationship to open a discussion full of something I didn’t understand totally myself. Talk about a sure fire way to scare a guy away! Hi, my name is Lisa. I like football and enjoy drinking beer. Oh, by the way I have a neurological disease that will probably sabotage any type of intimate relationship that we could ever possibly have. 

I guess I didn't consider exactly how warm the day had become. By the time my fella and I began our half mile trek from the parking area to our assigned seats, it was quite warm; and in tail gate fashion I had consumed at least one cold brew prior to embarking on our little walk to the stadium. With the heat beating down on us, we walked hand in hand across Don Knotts BLVD and past the Niosh building into the famed Blue Lot north of Milan Pushcar Field. That is when it hit me…no, that it is when it blasted me to my knees. I could no longer feel my  right foot…at all. I was dragging my leg so fiercely  that my man had to carry me to the closest off path location. I remember that I kept telling him that I just needed something cold to drink and some shade. Game time was approaching and I did not want him to miss a beat. One of the most wonderful events at a WVU game is the band’s pre-game show where our state is honored in an awesome rendition of the Appalachian folk song Simple Gifts. It has become our  goal to enter the stadium in time to watch this epic show. Simple Gifts later became the song that he and I walked up the marital aisle to.
I was not being a self less hero as I insisted that he go on and that I would join him in due time. I just needed to recover in cool shelter with an even cooler drink. Being the gentleman that he is, he adamantly refused and stayed by my side until we entered the gates where he leaned me against a wall long enough to find a lemonade vender. Two young university students stopped on their own travel to inquire about my health. I must have looked like a deranged drunk, with one side of my face drawn (at least that is what it felt like) and my body bent into an abnormal  S Curve. But they insisted on staying by my side until my guy came back with my cold drink. I felt bad about them staying with what was in their eyes had to be a worn out alumni out of drinking shape. What a sight I must have been.
Upon his return with my drink my guy stayed with me until I had sipped enough of the frozen treat (Zuls frozen lemonade remains my game day drink) to recover from my momentary heat related MS reaction. We climbed the steps to our crow’s view seats and I was fine the remainder of the game. In fact, I remember him telling me that I walked faster than he did on our trip back to the car.
MS is so very unpredictable. Since that game my WVU man and I have married and continue to be loyal Mountaineer fans, but I now proceed with caution. 

excerpt from I Have MS. What's Your Super Power?

What does this have to do with beta seron? No much, really , except that I had had to inject at the tail gate a couple of hours earlier and I have to wonder if that, the heat, and the beer all joined forces that lead to an exacerbation. I hadn't assumed the role of guinea pig yet.

Moving on in my drug journey...

Excitement had been building in my mind with the upcoming release of Tecfidera, the oral med that hyped as the ONE and ONLY. My assumption was that it was the ONLY oral treatment on the market. Wrong. But I had to try it. No needles, no bruises, no startled stares when I had to pull out the injection equipment in public. Guinea Pig lesson #2: Not every drug reaction is the same for everyone.

Want to read more about me and affair with Tec? You'll have to buy the book for that one. I have no desire to relive that particular nightmare. I like to think I did it all for medical science.

I remained drug free for a couple of years before realizing that it probably was NOT a good idea. The MonSter was only becoming more verbal. So...enter Copaxone, another fun needle game.

I think it's probably a good drug, but the bruises were ten times worse than those of beta seron and injection site reactions became intolerable (for me) quickly. I gave Copaxone two years of my life before exploring new possibilities. 

I just could not bring myself to consider an infusion although several MS acquaintances were considering  Ocrelizumab (Ocrevus). 

I really couldn't much info about Lemtrada and Tysabri scared the stuffing out of me; so on to what I learned were other oral possibilities: Aubagio and Gilenya. Several of my MS community pals swore on Aubagio. I attended two or three meetings to discuss incorporating it into my life. It sounded promising until my neuro started promoting her belief in Gilyena. Not that there is anything wrong with Aubgio, he assured me, but G was her choice for me. I decided to trust in her studies on the issue and allow her knowledge to guide this little piggy. So far, so good EXCEPT  for the crippling headaches once a month. 

I don't foresee myself jumping on another medication bandwagon any time soon. I'll just proudly wear my guinea pig badge for a little longer.I do so hate thew side effects, though, but that's part of the job, right?

What meds/treatments do you practice? I would love to know more first hand experiences with alternative treatments such as essential oils, herbs, physical activities, and diet. Please share  your thoughts with us.

Thank you for joining me today. See you tomorrow for my 30 Day MS Awareness blog-a-thon (with or without a headache),


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