I think I’ve finally found a suitable neurologist replacement! I had my first appointment yesterday with Dr. G and it went really well. He talked to me as an adult person who might know something about my own disease process. He did not condescend or talk to me as if I’m 5 and haven’t a clue about my own body. He laughed with me, he listened to me, and he will let me continue to make my own choices about treatment.
So my first choice is one that I made a few years ago… after lots and lots of research with my previous super fantastic neuro doc in Austin, and after watching every detail of clinical trials, I am finally enrolled in the BG-12 program. Tecfidera. I can’t tell you how much I’ve been waiting for this. I know there’s been some news floating around about PML but it’s in relation to Fumaderm, not Tecfidera. While the two have the same base drug in common, there are big differences in the other components of the compound drugs. And it’s those other differences that create the PML relationship.
The most important thing to watch for when taking Tecfidera is lymphopenia:
TECFIDERA may decrease lymphocyte counts[see Adverse Reactions (6.1)]. In the MS placebo controlled trials, mean lymphocyte counts decreased by approximately 30% during the first year of treatment with TECFIDERA and then remained stable. Four weeks after stopping TECFIDERA, mean lymphocyte counts increased but did not return to baseline. Six percent (6%) of TECFIDERA patients and <1% of placebo patients experienced lymphocyte counts <0.5×109/L (lower limit of normal 0.91×109/L). The incidence of infections (60% vs 58%) and serious infections (2% vs 2%) was similar in patients treated with TECFIDERA or placebo, respectively. There was no increased incidence of serious infections observed in patients with lymphocyte counts <0.8×109/L or 0.5×109/L. Before initiating treatment with TECFIDERA, a recent CBC (i.e.,within 6 months) should be available. A CBC is recommended annually, and as clinically indicated. Withholding treatment should be considered in patients with serious infections until the infection(s) is resolved. TECFIDERA has not been studied in patients with pre-existing low lymphocyte counts.
So my course of action will be CBC’s every 6 months while taking this medication monitor my white blood cells. Before starting the therapy, I will have an MRI and CBC, both next week.
I haven’t had an MRI in about 18 months. I guess it’s time.
In other news, well, I’m really not able to write about it yet. I will soon. Something very big and life-changing is impacting my family right now. I will write about it as soon as I’m told I can.
It’s hospital week. Today at work is going to be a kick. There is a BBQ cook off, a live band, a talent show, and other fun stuff going on all day long. My department will be hanging out all day in the fun zone… the guys enter the cook-off each year. They set up a gazebo thing, cook, and have a good time all day long. I get to join them for the afternoon. I have meetings this morning. Another part of hospital week is the daily drawings…. raffle type drawings. Every employee is automatically entered… not tickets. And every day, the powers that be draw a name from the big hat… actually, about 10 names… and if you’re name is drawn, you win a prize…. BIG PRIZE! I couldn’t believe the prizes when I saw the list: xbox, 32” TV’s, Google Nexus tablets, Bose speaker systems, 10 pack movie passes, high dollor AMEX gift cards… that’s just some of the prizes.
I haven’t won anything. I have one more chance today.
The band… a group of doctors from the hospital: