PatientsLikeMe members are located all over the world, and this month, Swedish MS advocate Jazz1982 shared about what life is like on the other side of the Atlantic. She spoke in detail about the stigma surrounding MS, her exceptionally strong mindset and her experiences with Betaseron, Tysabri, Mabthera (Rituximab) and a few other pharmacological treatments.
You mentioned you hail from Sweden – a lot of the MS community has been talking about the new drug Lemtrada that was recently approved over in the E.U. What have you heard about it?
Well, I’ve been living in Sweden for the past 4 years, and I’ve only heard about Lemtrada through my neurologist when he mentioned the list of viable medications I could switch to, and he did not recommend it for my case. It was shown to cause an increased amount of infections due to a compromised immune system, and I already had an almost chronic UTI while on Tysabri, so we voted it out.
MS awareness is a big part of your life – have you connected with any fellow MS advocates in Sweden or the greater E.U. through PatientsLikeMe?
MS awareness is a very big part of my life, but also as a side note, I have to say that I learnt not to say I have MS. The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness, when in reality I was very fragile and easy to break before the MS. Post-MS, I’m one of the strongest people I know, and I take things very differently from how I was before. Priorities change, your body changes, you change and become flexible; this is to deal with everything MS might throw at you because it spills into your everyday life, and being flexible just becomes second nature to you. Things become far simpler than they were before because you have bigger problems than your annoying boss, your untamed hair or not having a boy/girlfriend. When you have MS or any other chronic disease, your national anthem bellows the sound of constant loss, and it hurts to hear your name in the song. You have a choice to let the so-called bull grind you to a pulp or see what you have and use it to make the best out of the situation. I always get the ohhhh you poor thing look once anyone finds out that I have MS, and quite frankly, I’m not interested in their pity. What I am interested in is leaving the world a better place than when I came in, and either you support me or work with me, otherwise, I don’t have the patience to deal with pre-conceived negative notions that people have around any sort of illness.
On the more positive note, I love it when people ask questions about being sick. The other day I had a family member ask “how is it that someone who can only walk with a walker be happy?” When you have lost everything (your marriage, your career, your friends, the life you once knew) and you learn how to walk again, it’s the most ecstatic feeling in the world to be able to take a step, completely unaided by another person. Everyone wants to be independent, and when it comes back, no matter what shape or form the package comes in, you love it and you love it intensely. Questions are more than welcome, and it makes me feel good to be able to shed some light on the situation.
It’s a personal choice, and I tried to share it but found it to be an overall negative experience where no one was learning from it, so I chose to mostly keep it to myself.
So, yes I have spoken to others that have MS, Parkinson’s, stroke, etc, in Sweden, though PLM is not as popular here than in the US.
Many members have shared that they had trouble finding a diagnosis. Was that your experience, too?
I have exhibited symptoms since I was 8 years old, which is highly unusual, but my MS went into full swing in my 20’s and I wasn’t diagnosed for 2 years while my condition rapidly deteriorated. A diagnosis was both a relief and a shock to my system. Everything comes in a 50-50 coin flip, one way it’s a disaster and another it’s a burden off your shoulders. It’s not something you could have evaded if you just ate and exercised right, you get to hold up the MS card and say “see, I knew I wasn’t insane! I knew I wasn’t imagining it, it actually has a name.” The human brain is the ultimate categorizing machine, you need to categorize it for yourself and so others know how to deal with you. Once the category has been chosen, then the mission begins of going through the stages of mourning the loss of the old you and embracing the new you. I found that to be the easiest part, the hardest is seeing who gets on board with you and who doesn’t. It’s kind of like fast forwarding through a tape of your life while everyone else is still in “normal” mode, it’s painful but you learn a lot. It’s an experience that no one welcomes at first, but you learn to see it as a long-term benefit! Similar to the saying the truth shall set you free, but it will piss you off first.
Can you share a little about your treatment experiences with MS? Have you ever changed treatments? And if so, why did you decide to?
I first started out with Betaferon (Betaseron to US readers), which was a painful 3 years, but I didn’t have much choice when it came to medication back then. As it turns out, I was allergic to interferons, and as you may know, medications are determined by a trial and error method, which can be catastrophic. My slow decline into what I see as losing my humanity began and didn’t stop until I met my current neurologist (whom I love to pieces), when he immediately took me off the Betaferon and switched me onto Tysabri. I was one of the lucky ones, it was nothing short of a miracle. I suddenly went from not being able to see, feel or think to leaps and bounds better (along with rehabilitation) when I earned my Master’s degree, and I was able to walk again and simply gained control of my body and my life in the process. It was tough, but to see your brain functions come online one by one is an honor in itself really, and well worth it. After 2 years on Tysabri, we did a blood test, and my JCV antibodies were too high for comfort, so I had to switch.
My neurologist follows protocol but he also listens to my reasoning, and we had a long discussion about my treatment choices. Protocol states that I try Gilenya after Tysabri, but after doing some research I found Mabthera or Rituximab. Now, Mabthera is also a chimeric monoclonal antibody that depletes B cells, while Tysabri depletes T cells and a significant link was found between the depletion of B cells in regard to T cells. In other words, you deplete B cells then you deplete T cells in the process while not compromising your immune system. Now Mabthera is used in Rheumatoid Arthitis and Non-Hodgkins Lymphoma, but it’s off label use was for MS. Gilenya uses a different method all together and to my mind, why try something when you don’t know its efficacy on your body, while you already know what Tysabri has done. So, after a long talk and seeing the numbers for all the medicines’ efficacy, we chose Mabthera. My neurologist was supportive of the decision, made and prescribed the treatment and explained it fully. He even gave me a hug at the end of it. 🙂
I can definitely say Mabthera was even better to me than the Tysabri ever was. I am currently on Mabthera and it may sound scary (most of the MSer reports I read were that of impending doom) but I asked my nurse and neurologist about it and they said that MSers barely noticed anything at all. I am currently on Mabthera (just started it 3 months ago) and would say if Tysabri worked well for you, I highly recommend it if your doctor gives you the green light. It may sound daunting to try an off label drug but I didn’t have a single symptom on it.
As I’m sure you all know, switching medications was not easy and I had prepared for the worst but went in hoping for the best. Usually, if anything is to go wrong, it will during the first hour of the infusion. I went in prepared with my anti-histamine (some people experienced allergic reactions) and my Tylenol but the hospital staff gave me that plus a small dosage of cortisone (5mg) but never did I even dream that I wouldn’t experience even 1 symptom. I get an infusion every 6 months, and during the infusion the nurse checks your blood pressure every 30 minutes and increases the drop rate. The infusion lasts 5-6 hours (I am sometimes longer since my veins see a needle and hide like they saw the abominable snowman, and it takes an average of 3 times to get a vein, my record is currently at 6). Clinical trials and previous MSers have used it safely for up to 8 years, which to me is pretty impressive.
You share a lot about MS research in the PatientsLikeMe forum – how do you see sharing info like this, and your own health experiences, helping others like you?
Numbers are the sexiest thing. I know, people don’t associate numbers and sexy but hear me out. They help me determine which direction to shift to, help others, and they’re the universal bind that holds us all together. I get to make an important choice without the influence of others, unreasonable emotions or illogical judgments. Numbers don’t lie; knowledge is king and with this evidence I can increase my quality of life and succeed at being me, which in the end, is all that matters. If that isn’t sexy then I don’t know what is.