It’s been a day over a week since I’ve taken anything to control my MS. For the past five years, I’ve given myself a daily shot of glatiramer acetate (Copaxone) to fight against the progression of my Multiple Sclerosis. In all honesty, I’ve forgotten to do it here and there and there was even a few months that my neurologist actually had me taking it every other day, but I’ve never gone more than two days….ever. I am trying to decide what it is that I’m feeling right now. Am I brave, feeling reckless or am I just nervous?
The routine of administering Copaxone isn’t pleasant but it was mine and it was a way to fight back. I have had five fairly good years and, until the last year, progression-free MRI results were part of this which means Copaxone was good for me. I can’t say that I actually miss Copaxone, or giving myself Copaxone and I certainly don’t miss the effects that were always present to remind me that I was in a fight. The hot, itchy welt followed by the painful lump at each injection site that wouldn’t go away until there were at least three others weren’t enjoyable and the lipoatrophy that will never go away is depressing but they are my battle wounds from fighting. My MS tends to make me hypersensitive to anything that assaults any of my senses and Copaxone was often “nails on a chalkboard” for me. The sounds of tearing the paper off of the plastic sleeve that housed the unused syringe, the pop of the Autoject when it hit the plunger to push the medicine into my body and the clink of an empty syringe hitting the others in an echoing sharps container often hurt my ears and the smell of rubbing alcohol now makes me nauseous. My sense of touch has been assaulted the most because the pain of the needle and the even more painful liquid it administered left a continuous pain which resulted in assaulting my eyes with permanent pits under my skin that make me cringe when I look at myself. It has been five years of irritating loudness and now I have none of it and it’s just static. There is no quiet or reprieve for me when I always thought there would be, there is static and it is loud and bright in a space too quiet and dim to hold it.
I am waiting to start a new therapy to fight against the progression of my MS, which is why I stopped Copaxone. I’ve listened to and read about other people’s desire to stop their disease modifying therapy because they are tired of it all as well as those who haven’t started or been able to continue either out of fears, monetary restraints or they just don’t feel the numbers are good enough to justify the risks and tolls of MS medications. I clearly see and have felt all of these issues many times myself but now, as I do nothing but wait, I know that I’m not too tired to fight on and that my fear of disease progression is stronger than my fear of side effects as well as wishing the statistics from all the current medications showed better results to justify the risks.
So, I guess to answer my question, I feel all three of these things. I know I’m worried because I’m writing this as well as not sleeping and it feels rather reckless to be doing nothing to fight my MS but I also feel brave. I know I will be brave to go though the noise again that the new medication will bring to my body, as well as a new set of unknowns because I am certain it will also require as much and I know I had to be brave to take the leap of faith the decision required but I wish I was also brave right now, in the present as I write this through all the static.
I’m trying to gather as much information as possible about BG-12. When will it be available? What are the expectations? How does it compare with other treatments in efficacy, side effects and safety? But really, my biggest question is how much is it going to cost and will my insurance company cover it. I’m trying to not get my hopes up again but the idea of not having to routinely jab a needle into myself is too wonderful to let go. So, I will continue to scour the internet and ask questions anywhere that may be able to provide answers. My hopes are already up, I just hope this time is a victory.
I know my goal for the new year was to be positive, see the silver lining, be grateful, believe in unicorns and wishes made on stars coming true….. Okay, I’m in a bad mood and I’m not feeling too great. My mood is probably what is making me feel bad physically but I have MS and I’m allowed to blame anything on it that I want, especially feeling like crap. Well, not really but today I dare anyone to tell me differently! I am so tired of my insurance company telling me that I’ve exceeded my benefit limit and asking me if I want to talk with a pharmacist to find a more cost-friendly solution, you know, because there is one!?$!# I’m tired of people telling me that my Copaxone is toxic and is only there to line the pockets of “Big Pharma” and the doctors paid to prescribe it. I’m tired of hearing about the recent Gilenya death and how there are surly others that have been covered up. I’m tired of being told that I have a “leaky gut” and that my diet is what caused my MS and changing it is the only way I’ll ever feel better. I’m tired of giving myself a shot. I’m tired of always having a ten thousand dollar balance on my credit card because Copaxone is so freaking expensive. I’m tired of the term “Big Pharma”. Mostly, I’m tired of being tired. It’s exhausting to me to think about the fact there is no cure for MS and that it’s a progressive disease. I want Gilenya to be an option for me both physically and financially. I want the days of jabbing myself with a needle to be over. I want to be able to enjoy fried pickles and a beer without the voices in my head telling me that Dr. Swank and Ann Boroch say these are both taboo. I’m sorry to the two people who read this because who wants to read such crap?! I hope you both are having a better day than I am and I promise to be more upbeat, or informative or at least not so annoying. Maybe I need a nap…..
I wish someone would make the decision for me. I know whatever I decide I’ll question incessantly yet if someone else were to make the decision I would trust it. I guess I’m still working on trust issues with myself. One of the hardest parts about having MS is all the uncertainty. How am I going to feel in the morning? Is this heat going to knock me off my feet? Will this glass of wine give me a four-day hangover? Will my MRI show progression? Will the therapy I choose help me? This last one is the uncertainty that’s keeping me up at night. I see my neurologist the beginning of May and, at that visit, I need to have my decision made. Do I switch to Tysabri or Gilenya or do I take my chances with staying on Copaxone? I’ve been on Copaxone for three years now and it’s worked really well. I haven’t relapsed and my MRIs haven’t changed. What has changed is my body. I have developed lipoatrophy from my injections and I am progressively losing places to inject. I don’t want to continue injecting to where I lose the option to inject at all. One of the first things my neurologist told me, and I agree, is that I don’t want to run out of options. I don’t want to take injections off the table by injecting Copaxone for too long. The other injectable treatments don’t cause lipoatrophy like Copaxone but they come with other side effects that I know would be really hard for me in other ways. Still, I need to have these as options in case everything else doesn’t or stops working. Tysabri and Gilenya are riskier than the injectables. There have been deaths from Tysabri and just this week a man died within 24 hours of taking his first dose of Gilenya. Now here comes the hard part, because when death is thrown on the table you’d obviously avoid it at all costs, but it’s not so black and white. First, we don’t know if Gilenya was the cause or even a factor in this man’s death and, if it was, 28,000 people have not died. Those are still really good odds. The odds are really good with Tysabri as well. Both treatments require testing and screening before treatment can begin and you are closely monitored while on them. I tell myself that it’s the quality/quantity question and without a doubt I choose quality over quantity. My problem is deciding where to draw the line. It’s the uncertainty while trying to stay ahead of this disease in any way that I can that has me up well into infomercial time. How far do you go to do that? Over the next four months I’m going to read as much as I can and make a list of questions for my doctor. I know it’s going to be like the time when I was a little girl and after waiting almost two hours to get to the top of the water slide line had to decide which of the three terrifying slides I was going to plummet down or would I take the walk of shame back down the line. I don’t like being scared and, now, I’m feeling terrified. I also don’t want my decision to ever make me feel ashamed. I am a wife and a mother and I am needed by three amazing humans. I don’t want to let them down…at all. I obviously don’t want to die, but I also want to be able to walk, see and really participate in our life together. I want to win, but I want someone to tell me how to do that. What would you do?