Tysabri It Is!

Before I continue with this post, has anyone else found it really hard to find information about Tysabri in Canada and Canadian patients stories who are on it or who have been on it, because I have. Hopefully I'll change that as you follow my story.

The MRI showed two new lesions on my brain compared to the last MRI of my head I had done two years ago.

I asked my doctor if he could tell by where the lesions are located what part of my body it might affect now, in the future, at some point in time. He said he could tell but didn't want to tell me because a) it might cause me stress knowing and since there's nothing I can do about it why put that stress out there and b) if he did tell me, I might think I have symptoms that I don't. Then he said, "I know the new lesions aren't affecting you now because you walked into my office". Now I get why he doesn't want to tell me the whole story. Even the little he told me was enough for my ears and enough to make me feel good about what is to come.

Before I walked into my doctor's office, and after a lot of research, I made the decision to try Tysabri. I did listen to his thoughts on Tysabri and Gilenya before making my 100% final decision, and I think he thinks I made a good decision based on what we know at this point in time about both medications. Honestly, I think if I had picked Gilenya he would have been just as happy with my decision and that I did finally make a decision to try something.

With Tysabri there is a risk of getting PML (Progressive Multifocal Leukoencephalopathy), an infection of the brain, and a higher risk of getting PML if you have the JC Virus antibody. As of now, or from what I understand so correct me if I'm wrong, the reports show 1.56 cases of PML out of every 1000 people who have been on Tysabri for over two years and are positive carriers of the JC Virus. You can get a blood test to see if you are a carrier of the JC Virus but it's not available in Canada and you can't pay out of pocket to have it done here in Canada (or so it seems). The issue of a patient getting PML is more of a worry after 24 infusions (or after two years as you get one infusion every four weeks) and my neurologist thinks by then (or before then) the test will (hopefully) be available in Canada. If I test positive for the JC Virus at the point when the test does come available, I can decide what to do then (switch to another medication or stay with Tysabri).

I have found the last two weeks so overwhelming with emotions. I feel both scared of what might happen and empowered by taking charge. I can't look back and say I didn't try.

So, for now I wait for the call to initiate the first infusion.

Bring it on!

Gilenya or Tysabri? That is the question.

It's been a hard last few weeks for me but I'm trying to keep my spirits up.

I seem to be having a lovely flare-up -- hot back, tingling in face, feet and fingers on and off, dizziness, flickering feeling in my eyes, heavy arms, my whole body feels heavy and blah and I just can't find the energy to do much, heaviness in ears (not sure how to explain it but it's like they need to be popped), feeling like a film is over my eyes (I'm thinking maybe it feels like I'm wearing contacts but I've never worn them before). Oh and, can't forget, EXTREMELY fatigued! The flare-up has been a slow progression and seems to keep building. The way I've been feeling, how it's coming in layers and staying longer, isn't like most flare-ups I've had in the past.

I went to my neurologist a week and a half ago hoping, gasp!, for some IV steroids. I've never felt like the steroids have done much good for me (though my mom seems to think otherwise and she can probably judge me better than I can from the outside), and I haven't had steroids since 2005 when I had optic neuritis, but I was starting to feel a little desperate. My doctor didn't think steroids would do much for me at this point and started me on Gabapentin (for the constant lower back pain I've been having that you can read about here), told me to start taking 4000IU of Vitamin D and sent me for a MRI and, because the injectables haven't been good to me the times I tried them, he suggested I do some research on Tysabri and Gilenya (Fingolimod). He didn't want to voice too much opinion yet on either as both can have intense side effects including, gasp again!, death. The joys of having MS....ugh!

So, that's where I am now. I've been reading as much as I can on both but I'm finding there's not much information about people in Canada who have been on either. I keep going back and forth as to which one to try first. One day it's Tysabri. The next day it's Gilenya. Gilenya has only been out for a short while (Sept 2010), and I think even a shorter while in Canada, so there's not much long term (past a year even) information about it except for those who were in the trial studies. I've recently heard something about skin cancer with patients who have been on Gilenya but I need to do more research on that. Tysabri seems to be more well known in the US and other parts of the world but I haven't heard much about it here in Canada. It was pulled off the market for a while due to a few deaths caused by PML, also known as Progressive Multifocal Leukoencephalopathy (a rare brain infection), but it came back on the market a few years ago. Needless to say, it's a tough, tough, TOUGH decision!

I have a few questions for anyone who has read this far and wants to comment -- have you been on Tysabri and/or Gilenya? Are there any moms out there or people between the ages of 30-40 years old who are on either of these medications? What are your thoughts? How did you feel the first, second and third month after starting the medication? Do you notice any positive changes and, if so, how long until you felt these changes? I have lots of questions on both so feel free to give me as much info as you like, or you can email me at keeponsmyelin@gmail.com.

Hope everyone has a wonderful Wednesday!