I have said that I will continue to update all of you on my experiences with taking Biogen‘s newly released disease modifying drug (DMD) for MS, Tecfidera. I believe that this is week four, but I honestly apologize, time just seems to fly and days get clustered up together and I truly don’t have a fucking clue….but it’s been a while. As I have said in prior posts, I have no side-effects and I no longer need to take it with food (although I do try to be conscious about this, because it does help me to eat.) In my last post about Tecfidera: Tecfidera (Biogen) – A “NEW” BETTER? I mentioned that I did feel as if my symptoms might be improving. BUT, as anyone with this stupid disease knows, who the hell knows. Is it the meds? Is it just a good day, or a few good days strung together, as a gift from the MS GODS? Is it that FINALLY I might be experiencing some of the REMITTING part of the Remitting/Relapsing MS, that I have heard exists. Although my walking and balance has GREATLY improved over the past 2.5 years (no cane or SEGWAY!!!) the pain and burning and altered sensations have been there each and every day, just waiting to “kiss” me good-morning and tuck me in at night.
I view this as my “remitting part,” the time that I had always hoped I would feel a bit better, BE a bit better. I had come to understand and accept that the pain and burning and altered shit was just going to be there, that it wasn’t part of the “deal” of having “better times.” BUT I am beginning to have moments, little brief pockets of time, that the THING that hasn’t budged an inch since it started back with my DX in 2007 (the pain and burning and fucked up altered sensation thing) feels a little bit BETTER! It is not an ALL the time feeling of improvement; it is fleeting and if I am NOT focused on how I am feeling, what I am experiencing, it can very easily go unnoticed. With my life, and all that I do, taking note of myself and ANYTHING I am feeling, is an unlikely moment. I have been trying to be more “conscious” of all of it, because I really would like to be able to answer people’s questions. If I am going to put it out there that this medication IS helping me, I want to do so with a great deal of confidence. I only want to endorse that which is worth endorsing. BUT the other thing that is a tough call on this one, is that it doesn’t CLAIM to help with any of this SHIT, it’s JOB is slow down the progression of the disease, a “disease modifying drug (DMD),” and with THAT, I have another problem. I DID go and have an MRI for the first time in three years; The Results are In and although I am super lucky that there has been no progression, no new lesions since my MRI in 2010, the fact that I haven’t been on a disease modifying drug, makes me wonder. How am I going to be able to say that Tecfidera IS working, doing it’s job? Is it warding off the disease? Stopping some of it’s attempted “advances” on me and my body? It seems that I was doing just fine all by myself, without “team Tecfidera” backing up my ass. So why join the team?
Shawn and I talked about This quite a bit before I decided to start the new medication. What it came down to, for me, is that IF I take it and the disease progresses, I can be mad at IT, Tecifedera and THEM, Biogen, for letting me down, not slowing this stupid thing down. BUT, if I don’t take it, and the disease progresses, I will be made at ME, for not taking the drug, giving it a shot. I realize that it can be argued that if I am taking the drug and the MS progresses, that it might just be that it would have progressed even MORE had I NOT been on it and so therefore it WAS still doing something. This is all the shit that drives me absolutely ape-shit crazy. It almost reminds me of some of the arguments that took place in my college philosophy class. “To be, or not to be?” “To have MS, or NOT have MS?” BUT there isn’t that option. I can’t “uncheck” the apparent MS box I checked when selecting MY life options out. You all can call me crazy (or fucked-up if so inclined) but THERE is a part of me that doesn’t regret selecting that box on the life form. Over and over in my life, it has been proven that EVERYTHING HAPPENS FOR A REASON, and so I would be foolish to not look at this disease, and the changes that it has made in my life, and look for the good. The REASON.
So, I decided to give Biogen‘s new “miracle” pill, Tecfidera, a chance, and that decision was based SOLELY on the hopes of it slowing down the MS. BUT these first few weeks have brought about another possible perk; improvement in symptoms (the SHIT) that I have come to just accept. I was NOT expecting this, but am certainly NOT complaining. I have made other “friends” from this blog and my new introduction to the world of Twitter (I am now a TWIT!) that have decided to give Tecfidera a chance. One has had a super tough time with stomach issues, and has had to drop down to half dose again for the moment, and others have had hot flashes and flushing that don’t seem to be going away. This makes me feel sad, and guilty. I want EVERYONE to be able to feel better, to have a small glimmer of hope for some improvement. I know this is NOT realistic, it is NOT going to happen, but I am hoping that maybe by putting some of my funny shit out there, that maybe I can at least give everyone a smile every once and a while. I am NOT a cheesy, corny, hokey person, who is into group-hugs and singing Cum-ba-ya songs. BUT I already feel I have made a connection to a bunch of AMAZING people through this blog, it it gives me encouragement that I SHOULD go out and tell my story, help people laugh and smile (even it it IS at my expense!)