Tag Archives: Avonex

The Struggle

The Struggle

I struggle to get kids out of the house with some kinda breakfast, Eggo Waffles in the car, spelling quiz in the car, pull over to yell effectively about wrong words. Doesn’t everyone do this? Get to work, park my car on E. Not the car…me. At work, struggle to pee, no time for that, struggle to teach, to be patient, answer questions, give guidance, go to meetings. Stay awake in them, have fire drills. Struggle to get kids to soccer, tennis, and gymnastics. Take sitter to play with one while the other is in activity. I drink coffee and wait. Struggle to get home, struggle to get family feed, struggle to do homework. Struggle to read stories, fall asleep while reading Harry Potter…again, struggle to grade papers, keep up, Hubby does my report for work, struggling with cog fog, can’t concentrate, struggle to create a test…couldn’t. Struggle to be patient, struggle to be a loving mom, struggle to want sex, sticky notes on bathroom mirror, reminders, HAVE SEX, MORE SEX, ANY SEX, SEX IS GOOD, grade papers 6:00a.m. on SUN. morning at Cracker Barrel, grade and plan from til 12, at noon “Mommy, Mommy!” music to my ears, I miss my family, husband struggles alone with two kids. Try to grade papers, after school; tennis club, drink LOTS of vending machine coffee, after school soccer stay in car to grade papers, instant sleep. Sat. grade papers, pass out, struggle to get to ballet with Avonex side effects, a peanut butter and jelly sandwich and Celebrex (found to be unsafe, taken off market). Struggle to meditate so that I could struggle more. Struggle to not kill anybody, struggle to stay married, struggle to have date-nights, struggle to get sitter, Chinese food and movie from blockbuster.

I had to stop struggling so I, quit.

HELP! I need your feedback more than ever. I am writing in preparation to speak to groups WITH and WITHOUT MS. Groups that are struggling for one reason or another. To make my presence as meaningful as possible, please tell me if you can relate to “The Struggle” in ANY way and if so how?

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Tecfi-WHAT? Candy for my brain!

Tecfi- WHAT??

brain.candyCandy for my BRAIN! My new MS disease modifying drug (DMD)

Yeah, that’s right …I’m on a new MS disease modifying drug that I’ve never heard of, and it was only approved by the FDA last month! I’m the one who wants everybody else to take these drugs for a few years first, so that I can see what happens. Well, guess what? I don’t have a few years to wait.

Reality check: This disease existed a bazillion years with no help in site, so, it’s time to take action; well, more action. The very first drug was approved just as I was diagnosed. I started taking it a couple of years later; I was scared because it was so new. Now, they’re coming out so fast, I can barely keep up. Years ago, when my doc felt like I had reached the “glass ceiling” of Avonex (injected once a week), I switched to REBIF (injected three times a week). REBIF worked well enough, until I couldn’t tolerate it any longer. It, or ANY of the injectable medicines. After being on those for so long, the side-effects just wore me down. How lucky am I for this “burn-out” to occur, just when so many other drugs are being approved. Gilenya, Aubagio, Tysabri, and now…TECFIDERA!

I take a Tecfidera capsule twice a day and that’s IT; no more SHOTS! It’s the new “candy” for my brain.  I do look at it that way, when I think about the difference it will make on my future. It has also been known formerly as, BG-12, which is a super big plus to me. Back in July 2012, when I saw my favorite Neurologist, he promised me that “very soon” there would be two new drugs approved that he would agree to me taking. We have a great understanding; he knows what’s important to me and I know those same things are important to him, so I trust him. I call him “OZ, The Great and Powerful”. BG-12 was one of those drugs.

In clinical trials, it rivals the other disease modifying drugs in, relapse and reduction of disease activity shown on an MRI. Another super plus on my list – it has been used in Germany for decades, at much higher dosages, to treat Psoriasis.  There is still that little question I have about the blood brain barrier, and how THAT’S affected by this drug in the MS brain. If anyone knows, please tell me. Otherwise, we’ll find out in due time. What we DO know now, from its use in Germany, is that it does not cause death (that’s kinda important).

The lack of side effects pretty much sealed the deal for me. The most common one is, “flushing”. This lessens and usually goes away within the first month. It’s a sensation of heat, or itching, and a red blush in the skin. HA! That’s MENOPAUSE for a month; you don’t scare me! Bring it on!

Candy for my brain:)

Did I mention that this candy costs $8,900.00 for a one month supply? Have no fear…co-pay assistance is here! I pay $10.00 a month, and so can you. The drug company has a $10.00 co-pay assistance program. There are no income requirements.  You can enroll every year, as long as you take Tecfidera. People covered by Medicare, Medicaid, the Va/DoD, or any other federal program can get help from MS Active Source with the cost.

THIS IS NOT A COMMERCIAL! I do not work for the drug company. I am just starting a new medicine that I’m excited about. I want to share:)

COMMENTS and THOUGHTS: What have your experiences been with Tecfidera?

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