Oh, the irony

I’m going to be out of town all next week, so obviously – obviously – they called me from the hospital telling me the medication was approved and asking if I could stop by on Monday.

“No, I can’t.”

The lady on the phone seemed surprised. “You can’t?” But really, for someone who’s been waiting for almost a year, waiting for another week is nothing.

So I’ll stop by the Monday after next Monday and hear what my neurologist has to say about the medication that was approved and that I’m due to start, Tecfidera. However, as my MRI’s are scheduled for the day after that, I won’t be starting anything until I have my brain and spinal cord checked, so I have a really good picture of the before and after. Actually, because of the side effects Tecfidera is well-known for, I’ll probably just start it on the following Saturday, in case I have to spend all day dealing with nausea and other even more glamorous stuff.

So, all things considered, that makes it another two weeks. But really, for someone who’s been waiting for almost a year, waiting two more weeks is nothing.

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A story of access – or lack thereof

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For the second year in a row, the World MS Day theme is access. Access may mean a lot of different things, and you can read more about it here, but to me, right now, it means access to the right treatment. So I am going to try to keep the long story short. Continue reading

Treating Your MS: A User’s Guide to Multiple Sclerosis Medications

Treating your MS HR_book cover jpeg-2I 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

New neuro, a whole new world

On Wednesday I went to an appointment with a new MS specialist. I am far from pleased with the way my MS specialist has been dealing with my case in the hospital. I have been waiting for months to start new medication and no one tells me why it’s been taking so long. I had to be tested twice for the JC virus for no apparent reason. No one tells me what’s going on, like my case and my MS progression don’t matter at all. Continue reading

Aftermath of a relapse: medication changes

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.

Chronicle of a morning spent at the hospital

This morning I had my routine appointment at the NHS hospital to get prescriptions for my Copaxone. 

Here we have a mixed health system, where the NHS coexists with private hospitals and private practices. I was diagnosed at a private hospital because not only do I have insurance but I also thought that I was only going to be prescribed some simple eye drops for my double vision (yeah, silly me, I know, let’s skip that part) and therefore didn’t want to go through the long waiting hours to be seen at a public hospital.

I love the neurologist who diagnosed me. She’s the kind of doctor who will never say “There’s nothing else I can do for you.” She is committed to helping her patients, she always asks about me, the person, before asking about me, the patient, and she always worries about my mood as she knows my history of depression and the impact it can have on my MS. However, she had to refer me to the nearest public hospital because, she explained, the only way I could start on a therapy was to be registered and seen regularly by a neurologist at a public hospital.

There is a reason for it. As I mentioned in a previous post, multiple sclerosis is one in a list of diseases whose patients don’t have to pay for any treatment or medication. That is why people are required to be registered at a public hospital, so that the state has some control over how much it is going to spend. But if this sounds very altruistic to you, consider the following: the cheapest medicine for MS costs around 500 euros, in a country where the minimum wage is set at 485 and a huge percentage of people are unemployed, retired or on disability. Even if I make 1000 euros a month, my Copaxone costs around 800, which wouldn’t leave me much to live on for the rest of the month. So this is the best solution to ensure that thousands of people manage to keep living their lives the best possible way.

But this is where the generosity of the NHS ends. If unlike me you don’t have insurance and the possibility to see a private doctor, you will probably have to wait 8 months for an MRI. You will be stuck with a neurologist who doesn’t care. My NHS doctor is supposedly the greatest expert on multiple sclerosis in the country. I should be honored that he’s my doctor but I’m not. Because while he may know a lot about MS, he doesn’t look like he knows a thing about people – you know, the human beings around the lesions in the brain and spinal cord. He told a woman not much older than me that he had already given her all therapies available and that there was nothing else he could do for her. He forgets that multiple sclerosis is not only about disease-modifying drugs. That are things like physical therapy, occupational therapy, speech therapy that can greatly improve the patients’ well-being. But of course, the NHS is not going to give you any of that. You either have money to go elsewhere and look for alternatives or you’re done.

The differences between public and private are so unnerving that I can’t help but feel revolted. I wait in the waiting room to see that lovely doctor. I’m extremely uncomfortable as usual. The hospital is the biggest in the city, which means it is chaotic, messy and noisy. I see a lot of misery around me. People who look older than they probably are, dirty, beaten. People who tell each other every tragedy in their lives, ’cause it’s the only place they find empathy. People who – I am sure – had they been provided with proper care from the beginning, wouldn’t be in wheelchairs, wouldn’t be in such bad shape. There is a part of me who wishes I could help them. But there is another part of me who wants nothing to do with them, who sees me as separate from them. “I’m not like these people. I’m ok, I don’t even look sick.” But this is obviously wrong. I probably have more in common with these people now than I do with co-workers. And let’s not forget that it only takes me becoming unemployed to be in their shoes, with no other choices than relying and depending on that hospital. It could be me. It can still be me one day.

The doctor calls my name and I go in. It only takes about ten minutes. I waited for two and a half hours for a ten-minute appointment. He barely glances at me as he is looking at my file in the computer. Asks me how I am doing. “Fine.” Any relapses? “No, nothing.” You’re on Copaxone, any lesions from the injections? “No, everything’s fine. The nurse comes check on them regularly.” Good. He chats a little about Tecfidera probably being available six months from now, passes me prescriptions for another nine months of Copaxone, vitamin D, and schedules my next appointment. And that’s it. I’ll see you in nine months.