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Tuesday, December 30, 2014

Tecfidera - Days 6 and 7

Okay, it is happening, just as I anticipated; my blogging activity is just as lame as it was before I committed to chronicling (That's an awkward word, if it is even a word at all.) my Tecfidera journey. WVU, my favorite college team and one of my Alma Maters, played in the Liberty Bowl yesterday and demanded my attention. With husband and his good friend (and WVU buddy), we huddled around the big screen downstairs to "tailgate" with our Mountaineers. It was a heart breaking couple of hours, full of ups and downs, nacho chips, cold beer (Yep, I was a bad girl, but did my best to keep things under control.), and comraderry (I have spell checked over and over again and I cannot find the correct spelling of this word, but I know it is a word!)

Anyway, here I am again after taking dose thirteen and on the last day of 120mg installments of this new and mysterious MS treatment. I am very nervous about "upping" the dose tomorrow to 240mg twice a day. I want to have faith in this pill so badly, but after living with no meds for three years and still functioning, I am just not extremely excited about filling my body with chemicals. I've read and shared the data, but it's rather ludicrous to throw all of your faith into studies comparing chemical and placebo use. Of course, there is probably no other way to conduct these studies. I just find it unnerving to compare written words to the actual human reactions.

Yep, I'm rambling, but I am no longer flushing. Will that happen again when I double the dose tomorrow? If MS is nothing else, it is extremely unpredictable, making it terribly exciting. Right?

When my family zip lined during our vacation a few years ago I was elated to participate in such an extreme sport. That was exciting and so not like me. Can I compare my zip lining experience to living with MS? Because I would love to say that MS is not like me either, but MS is me.  MS has made me re-evaluate my life. My mother is constantly talking about "one of these days" and I suddenly realized that every day is actually "one of these days". I have to stop putting off what I can accomplish today. So, I zip line and would actually like to do it again. This time through a National Forest. There are several things I would like to do. Oh, this is the eve of New Year's Eve, so I suppose it is a good time to talk about those things I would like to do.

Because this is so spur of the moment, my resolution list may require future editing, but here goes:

* Find an agent for my nonfiction guide to living with MS. (Spoiler alert: The title is Bruised, but Not Broken)
* Retire from teaching (still up in the air about that one)
*Remodel the bathroom and put new carpet in my bedroom (So, very, very materialistic)

Enough...bored all ready!

I'm burning daylight hours with this nonsense any way. I have a WVU basketball game to attend and a little time to spend with my gal pals after while. I promise to be a good girl today and to enjoy every single second.

See you tomorrow.


Sunday, December 28, 2014

Tecfidera - Day 5

I was a little worried this morning when I realized that I had slept until nearly 9:30 because my drug routine scheduled me to take my Tec at 8:00; but I swallowed a baby aspirin and prepared breakfast for my son and husband to give the aspirin a head start. After a bowl of Rice Chex and a cup of coffee I took dose 9 and I have suffered so side effects today. It's been a busy day and I am happy with my little accomplishments. I thoroughly cleaned my laundry room and shampooed the rug where the litter box is located. My cat's "space" is clean again. I hope she appreciates it.

When I was younger I used to take on cleaning projects with a vengeance, scrubbing, dusting, vacuuming, shining, tossing old stuff...I have discovered with a few years o me and the inconvenience of MS that I am much more productive taking my tasks in small measure with little rests in between. So, after the basement cleaning, I picked up a borrowed library book and allowed Joy Fielding to suck me into one of her superbly written mysteries. I am actually surprised that I puti t down long enough to warm up some left overs for a light lunch.

My second planned project for the day was to tidy my desk area in preparation of the arrival of my new desk top computer. It should be here tomorrow and I am very excited to welcome this Christmas present to myself. I got a great deal on a refurbished Dell and have BIG writing plans for it.

After being on winter break since December 23, I realize that my tentative plan to retire at the end of the school year is actually a good idea. I love being home to pursue my writing passion.

I have an affection for routine, but last night I actually stayed up reading until 1AM. That's not like me and I do not plan to make it a habit, but I have to admit that I kinda like breaking the early to bed early to rise rule that school teachers adhere to. No matter how adequately we mature in life, there is still a bit of that rebellious child lurking, isn't there?

Saturday, December 27, 2014

Tecfidera - Day 4

Well, I am still breathing and am experiencing no weird symptoms other than the horrible flushing that seems to have abated; possibly due to the bay aspirin; possibly due to multiple doses and my body adapting to this new intrusion of chemicals. Such is the way with MS. Everything is an hypothesis (one of my students favorite vocabulary words as they find it comes in handy at times of class argument).

So, to clear up the mud a bit, "Tecfidera [dimethyl fumarate] is a prescription medicine used to treat people with relapsing forms of multiple sclerosis." Got that? Tells you everything needed, right?
Tecfidera is a pill form of MS treatment that is far less painful than the alternating-daily needle of Beta Seron that I once  enjoyed. Just because it is less painful to consume makes it no less scary, though. I mean, putting any alien chemical in one's body is not and had never been on my bucket list of life experiences. I will admit that I like beer and thoroughly enjoy a glass or two of sweet wine, but that is actually as far as my chemical pleasures go. I am not a pill person and avoid over the counter cold and sinus remedies if I can battle those situations with vitamin C, lots of liquids, and bed rest. So, this whole Tecfidera thing is not my normal MO.




Tecfidera, as with any MS medication, will not cure MS nor will it "make me better". What Tecfidera and all the other MS drugs do is (supposedly and hopefully)  reduce the number of relapses (or exasperation). According to my handy dandy Tecfidera user's guide "27% of people taking Tecfidera ezxperienced a relapse compared with 46% of people taking placebo, making them 49% less likely to experience a relapse...This means that less than 3 our of 10 people taking Tecfidera experienced a relapse." I guess I am crazy, but I am less concerned about relapses than I am about what this drug is doing to my brain. Of course my user guide doesn't mention the rare, but possible, side effect of brain infection associated with this drug. Supposedly as long as my neuro keeps an eye on my white blood cell count things will be okay. My guide booklet tells me that I can report any side effects to FDA at 1-800-FDA-1088 or for more information I can log on to dailymed.nlm.nig.gov. Reassuring, I know.

I apologize if my take on Tec is far too cynical for you, my reader; it's just a way of venting, I suppose. MS just sucks and "that is all I'm going to say about that" (Forrest Gump), at least for now.

I did get a cute little pill box from biogen, the pharmaceutical company that produces MS drugs. So, along with my growing collection of designer canes, I now have an attractive reminder to take my pills twice a day.

If you want to know more about Tecfidera, go to www.tecfidera.com and to learn more about multiple sclerosis, visit nationalMSociety.org.

Enough about me and my drug dependency; I am going to go on a little day adventure with my parents and Aunt Sandra. Have a great day!

Friday, December 26, 2014

Tecfidera -Day 3

My son seems to fell a bit better today. The pediatrician advised me to fill him with clear liquids, use Motrin as needed for fever, and adhere to the BRAT diet when his appetite returns. He ate a small ball of chicken broth and noodles for supper and all is going well for now.

I, on the other hand, am tolerating dose four with much more success. Thanks to my FB MSers for their advice of using baby aspirin prior to taking my Tec and encouraging me to drink plenty of water. It didn't really help last night, but today I feel more like myself. Of course, each event will undoubtedly result in a differing reaction. 


After thirteen years of living with MS, my symptoms are becoming more mainstream and recently I have been introduced to random pains that I had read about but not experienced. My drop foot has been consistent since 2001, but so far it has only affected my right foot. Sometimes lately my left foot seems to want to join the party. I use a can more often than not and even when I feel strong my cane is not far from my side just in case. I don't mind the cane and am blessed with friends who have contributed to my growing collection of designer walking aids. That doesn't make it any less annoying, but having a lovely fashion accessory brightens the day a bit.

I will say that my Tecfidera experience thus far has been nasty. When first diagnosed I was prescribed Beta Seron and religiously self-injected for eleven years. I never questioned the drug even though I didn't like it; but when I just abruptly decided to stop taking it, I realized how much better I felt without it. Because I have suffered a couple of mild exasperations and my symptoms seemed to have worsened, my neuro firmly believes that I "should be on something" and I trust him unconditionally. So, it is Tecfidera for me, for now.

Thursday, December 25, 2014

Tecfidera - Day 2

Merry Christmas to all!

The flushing began this afternoon hours after swallowing my third dose of Tecfidera. It was awful. My skin (full body) turned a nice Christmas red and I felt like a swarm of fire ants had taken over as a new skin covering. I was hot to the touch and the chills set in for nearly an hour. It is difficult to separate the sensation from that of what my son is feeling with his holiday bout of the flu. Once the heat diminished and the chills abated, I felt certain it wasn't the flu (not yet, at least) and directed my panic to the internet to question other Tec users about my symptoms. It seems this is nothing unusual and I was gifted with several suggestions. I plan to take a baby aspirin twenty minutes prior to my next dose and was told to drink lots of water. We'll see...

Other than my crazy pal MS and my son's flu, this has been a nice family day. I just hope that he didn't give too much of himself to the rest of the family. I am truly sorry that his day has been plagued with this season illness and that the rest of his school vacation is healthy.

Have a safe and ill-free Christmas!

Wednesday, December 24, 2014

Tecfidera - Day 1

I will be taking a 120MG capsule twice a day for seven days before graduating to 240 MG twice a day. Tecfidera is very much recommended by my neurologist, but I do not know how excited I am about it. It is frightening knowing of the unanswered questions about  what this drug could do to my brain.
Two hours after taking my first dose, I experienced a severe hot flash , which I assume is the flushing side effect of Tecfidera. Accompanying this sensation my skin started burning and itching, especially the back of my neck and my forearms. The skin on my arms became bright red and splotchy. Then I was overcome with a full body chill. Everything but my face felt cold, probably due to the rise in my body temperature.
It was all really quite awful.
Supposedly these side effects will lessen with time. I can only hope. I have prayed about my involvement with this drug for some time and I realize that it is wise to "be on something", as my doctor says, but I am still uncomfortable consuming yet another experimental drug.
Since we MSers are all living under the microscope as medical guinea pigs, I guess it is my responsibility to my family is to play the game.
I am a terrible blogger, but I am committed to recording my experience with Tecfidera, in these early days at least.
Merry Christmas!