If you’ve been reading me for some time, you can finally open the champagne bottle. After I-don’t-even-know-how-many-months waiting, at last I’m starting a new medication. Tecfidera is here. It looks like this: Continue reading
I mentioned in my previous post that I wouldn’t be reading non-fiction for a while. However, since I’m in between drugs at the moment and this book came out a little over a month ago, I thought the timing was perfect.
I haven’t been taking anything for MS since February, and right now what I’m going to take next remains a huge question mark. I started on Avonex when I was diagnosed but soon it became clear that interferons are a big no for me due to side effects. I moved to Copaxone but disease progression as seen on MRI made doctors consider other possibilities. Continue reading
The first time I actually felt my survival instinct running in full mode was when I was diagnosed. While I was trying to keep my head above the water, get used to injections and side effects, and manage the overwhelming amount of info about multiple sclerosis I would have to become familiar with, I looked around me and everything seemed superficial, futile and vain. I knew I was being unfair, but people’s worries, problems and troubles irritated me. It all seemed pretty meaningless. I resented the fact that people were carefree enough to look for mindless entertainment. I was focusing all my energies in being well while everyone else was on Facebook talking about the latest random video or trend. Another funny thing that happened was that my creativity was gone for a while. I’m always full of ideas and there are constantly voices in my head playing parts in short stories that I sometimes like to write. Suddenly the voices were quiet. Imagination thrives in empty spaces, and there was no room inside my mind for anything other than MS and being fine.
Although at a much smaller scale, I’m getting hints of that feeling again. Right now I have to decide between a drug that might give me progressive multifocal leukoencephalopathy and another drug that might give me heart problems, knowing that both will shut down key functions of my immune system and thus I won’t be protected against infections and possibly tumors. At the same time people want me to engage in the usual office gossip of who’s backstabbing who, ask me if I’m counting the days until I see my infatuation again (who?) and expect me to remember about a concert or show I wanted to go to? I just feel like screaming.
Meanwhile, my mother has made clear that she isn’t happy about me taking any of those drugs. She didn’t need to tell me though, because two years ago we had the same discussion when I switched from Avonex to Copaxone. My mother has a cure for my multiple sclerosis: if I never leave my house again, only eat what she cooks and spend my time doing yoga, meditation and acupuncture, I won’t need anything else. She just forgets this isn’t very practical – or worth living for, for that matter.
So my survival instinct has been obsessively listing everything I’ve been doing for the past three years – and some of them for longer – to prove that I really can’t do more or better than I am already doing, and that this disease is simply unpredictable, random and not my fault. I have been:
- Eating the best I can. I have a varied Mediterranean diet, that includes a lot of fruits, vegetables, soup, nuts, and fatty fish. I started drinking 2 liters of water a day. Though I didn’t eliminate them completely, I cut down on dairy, gluten and meat, as I found I have more energy if I don’t eat as much. I never had a sweet tooth so I never ate much refined sugar. I don’t have pre cooked meals at home. When I eat out, I look for the best options. Yes, I occasionally have a pizza, but I don’t think it’s one occasion here or there that’s going to kill me.
- Exercising. The past ten years I did cardio fitness, yoga, pilates, contemporary dance and floor barre. This year, as I don’t have much time to enroll in activities due to having classes at night, I go running and I also do stretching exercises at home. They help me keep sane.
- Meditating. Although I don’t meditate as often and as regularly as I would like to, I notice I’ve been able to improve some of my cognitive functions. I’ve also been sleeping and resting better.
- Taking more breaks. This was something I didn’t use to do. I now take breaks during the workday, pick an evening every week to not do anything after work, say no more often and try to manage my vacation time in a more balanced way through the year.
- Taking my vitamin D supplements. Doctor tells me to take them, so I do.
- Seeing a psychiatrist regularly, and keeping my anxiety and depression as far away from me as possible with a little help from medication that prevents huge mood swings and insomnia.
- Doing psychotherapy and cognitive-behavioral therapy. Yes, I see two different therapists, but the work they’re doing complements each other. I credit both of them for believing in me and not letting me lose my mind all these years when relationships, responsibilities, work, disappointments and health issues just seemed too much.
- Looking for intellectual and social stimuli. Since my job keeps me in a bubble and doesn’t give me much room to grow, I have enrolled in courses and seminars that might interest me, meeting new and interesting people along the way.
- Trying to learn how to manage stress. This isn’t something you learn overnight, but I’ve been consciously paying more attention to the signs my body sends me and trying to worry less, take things less personally and put them in perspective. And also not be too hard on myself when I forget about this and get caught up by stress once again. I will get there slowly.
So, mom, am I missing something?
~Am I running out of resources?
Or am I just trying too hard?~
So the results of my MRI came in yesterday and, as suspected, things aren’t looking so good. In the two years since my last MRI I have six new lesions, older ones have grown, and there was the inflammation in my optic nerve. This means my neurologist wants me to change medication fast. A “therapeutic escalation,” she calls it. And, for once, I agree with her.
I’ve always resisted moving up to the second-line treatments because of their risks. My first experience with disease-modifying drugs was with Avonex, an interferon, and that was a nightmare. Even though the injections were weekly, the flu-like side effects were unbearable. I took Avonex for ten months and there was no paracetamol that could help prevent the fever and the horrible muscle soreness that came with it. But that wasn’t the worst. Blood tests revealed my liver enzymes were high, my thyroid was malfunctioning, and the MRIs showed the disease was progressing. So in November 2012 I changed to Copaxone.
At first I was worried about the skin reactions Copaxone is most famous for. I had seen pictures on the internet, and knowing how sensitive my skin is I never thought I would make it. But fortunately I got along with it well. Never had any major issues and even ended up getting used to the daily injections and carrying them around with me in ice pads when I went away. It was a nice relationship that I didn’t want to quit, but my MS is unfortunately stronger than Copaxone.
So now I have to consider my options. There are no more first-line therapies available, unless I’m willing to wait for Tecfidera. At the hospital they told me more six months before it becomes available, but I’m not sure I trust that estimate. Tecfidera was supposed to be approved in 2014 and now they’re pushing it to 2015. That leaves me with Tysabri and Gilenya. They’re both much more aggressive drugs. More efficient, for sure, but also with more risks and side effects. They’re also newer. While interferons and Copaxone have been around for almost 20 years, these two are much more recent, which means risks in the long run are not fully evaluated yet. Am I scared? Yes, I am, but maybe it’s time I start taking more risks. And not because I don’t feel fine. Right now I feel like I could train for the marathon, have a baby, start a family, write a thesis, go on adventures and marvelous vacations. But at the pace the disease is progressing, how am I going to be in ten years time? I have to consider that carefully instead of relying on how I am feeling in the present.
Luckily, people on Twitter have given me great feedback on both Tysabri and Gilenya. It feels encouraging to know that they are responding well to the therapies with no major problems. I have to hold on to that. I also hold on to the countless studies that are published every month about multiple sclerosis. There are a lot of avenues open to explore, from creating vaccines to the viruses that may be connected to the disease, to investigating the leaky gut syndrome, developing remyelination drugs, discovering mechanisms to switch off autoimmune conditions, plus all the buzz about stem cells… There is a lot going on and I believe the pieces of the puzzle will come together and it will all bear fruit sooner than later.
Meanwhile, my IV treatments are over and my symptoms improved, though I’m still not seeing totally clear. My neurologist said that it could still take around three weeks for the methylprednisolone to fully do its job. During these three weeks I will be thinking about Tysabri and Gilenya so we can discuss it further when I see her again in the beginning of October. I hope the side effects of the steroids will pass, as I’m feeling accelerated and having a hard time sleeping. My blood pressure is bungee jumping and my heart racing. This is all normal, but still annoying.
Now it’s time to put my life back on its tracks after this interruption. Today is college night and tomorrow I’ll go back to work. I’m hoping I can see my girl friends next weekend and talk about frivolous stuff and forget about diseases. I do have a lot swirling in my head. After something like this you can’t help evaluating your life all over again and wonder about the future, about your dreams, daydreams and objectives. Oh, and the conflicts. This relapse reminded me of what is wrong with some of my relationships and is giving me an opportunity to look at so many latent conflicts. But I will leave all that for another post. Right now I’m going to get some air.