Tysabri, where is it?

Almost two weeks ago, I was starting to wonder why I hadn't heard anything yet about my date with Tysabri. I thought by now bring it on would have already been brought.

I just had to wonder a little louder I guess because the next day I received a call from the wonderful secretary at my Neurologist's office telling me the Tysabri coordinator had been trying to contact me. She gave me the phone number of the coordinator and I gave her a call. I mentioned how I thought maybe she had my phone number wrong as there had been no messages left on my answering machine and I would have picked up if I was home. Seems as though you have to give them permission to leave a message on your answering machine. Um, ok, how do you expect me to do that if I have no clue you've been trying to call me?! We had a good chuckle and permission was granted.

Anyway, things got sorted out and the ball got rolling. She asked me a few questions and said an insurance coordinator would be calling me to determine how I was going to pay for the medication (since first born is supposedly not an option). Thankfully, my husband has great insurance otherwise it would be a whopping $3300 CDN per transfusion....GULP!

The insurance coordinator called me the next day or so, asked me more questions, had a conference call (party in the afternoon, wahoo!) with my insurance company to make sure I really, truly could get the thought out of my mind of remortgaging our house over and over again.

I hadn't heard much since that call a week and a half ago until I received two calls the other day. One was from my insurance company confirming what type of setting I would be getting my transfusion in (pool side wasn't an option, darn!) and then a strange call the other night at dinner time form some delivery company saying they had a package for me and wanted to know when I'd be home so they could drop it off. Since when do delivery people call to ask when it's convenient for you to deliver a package?! Anyway, the package should be delivered today or tomorrow and then I'll be able to give you all the juicy details of what might be inside the surprise package.

Looks like things are moving right along!

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!

What I Wore

I haven't done this in a while...

Tank Top: GAP
Shrug: Jacob
Capri Jeans: Jacob
Sandals: Old Navy
Necklace: Reitmans
Sunglasses: Nine West from The Bay



Bella wanted to join in the fun too!

Top: Old Navy
Pants: GAP

K Is For Kindergarten

Bella made it through her gradual entry week of Junior Kindergarten with flying colours! I think the real deal will be on Monday when she takes the school bus for the first time. I'm sure a few tears will be shed (mine, not hers sniff sniff).

S Is For School

The start of another school year has arrived -- the beginning of Kindergarten for Bella and Grade 2 for Luke. Isabella can't wait to go to big school but I can tell she is a wee bit nervous, and I think a little thankful, that she doesn't start until tomorrow. Luke, on the other hand, is super excited to get the ball rollin'!


It was mighty chilly this morning. I swear I could hear our teeth a chatterin' and our knees a knockin' as we walked along the sidewalk. I think Luke was too focused on the thrill of getting to school that he didn't care.

The bus rolled up and Luke and his friends boarded their big yellow ride. He gave me a huge two thumbs up when he and his friends found an empty seat at the very back of the bus. I think it made him feel like he wasn't the youngest kid on the bus anymore.

If you listen closely, you can hear him saying,
"enough with the camera already, mom!"

Sniff, my baby is growing up fast!

I can't wait to hear how his first day went. He's also excited to be in a Gr. 2/3 split so he can hang out learn with the "older kids". I wasn't too sure how I felt about the split when I found out about it, but now I'm thinking bonus! The Grade 3's have been speaking French for a whole year more so hopefully their skills will rub him the right way.

After dropping Lucas off at the bus, Bella and I headed over to the library to get some much needed books. I'm no longer counting the times Bella and I have read Sleeping Beauty or a Barbie book together but how many times we don't read them. I know repetition can be a great thing but if the books somehow play their own little game of hide n' seek, let's hope someone doesn't win in the seek part.


This stack of books should keep us busy for awhile!

Is today the start of a new school year in your house? How did it go?

Much Love Monday

It's Labour Day Monday! And, it's actually quiet in the house. S took the kids with another family to a park, so I've opened the windows to let the breeze in, plopped myself on the couch and I'm catching up on some emails and blogs.

Since it is Monday, I thought I'd add some much love!

These little dudes have been visiting all weekend. I guess they've found a spa vacation right in our own backyard.

We had our annual street party on Saturday.

My friend brought over these super cute pink lemonade cupcakes -- YUM!

Lucas and his friends had a candy stand at the street party with one of my favourite candies -- sour keys! I've been devouring these sugar delights all afternoon.

Speaking of leftovers from the street party, I used some veggies leftover from a veggie tray and some of the grilled chicken from the meat platter to make an oh how I missed thee stir fry. This used to be one of my favourite meals growing up at my parents house with white rice and doused (ok, maybe sprinkled) with soya sauce. I'm salivating over here. Is it dinner time yet?!

What was your favourite meal growing up that your parents used to make?

Hope you're enjoying your Monday!

Random Thoughts

watching ~ my children play with their friends.

procrastinating ~ mowing the lawn. I love mowing the lawn -- all part of my gardening enjoyment! But the lawn, and gardening, has been getting a bit neglected this summer. Hopefully once the kids are back in school I'll have some time for a little gardening TLC!

feeling ~ a little all over the place. I have a bazillion things on my mind with the start of school fast approaching!

wondering ~ how that little spider got on the inside of my window. The glories of lakeside living.

craving ~ chai tea. I think I'll make my way downstairs after this and add a nice warm drink to my me time.

missing ~ my brother and his family. I finally got to meet my nephew for the first time this month but sadly they had to make their way back home to Vancouver.

enjoying ~ reading about charities kids have created. Hannah Taylor who created Ladybug Foundation is very inspiring! I would love my kids to get involved like this. Hopefully one day!

Oh Alvine Kottar Ikea curtains, where art thou?

I finally found the perfect curtains for our master bedroom, or so I thought.

I got my happy dance on and was all ready to jump in the car and drive to Ikea with my start the car commercial excitement, the windows wide open and my woot woot holla'rin. I felt like that girl from the Ikea sales commercial:



then I find out...

IKEA HAS DISCONTINED THEM!

If anyone knows where I can find four Alvine Kottar curtain panels or if you have seen similar ones somewhere I'll dance and sing and shower you with joy. Um, ok, maybe my dancing and singing might take away from the joy part but I would be very grateful and thank you very much!

[Alvine Kottar curtains from Ikea]

I am...

still here.

A few of you have been wondering where I've been. My mom had knee replacement surgery last week so I've been pulled in a few different directions with helping her out and keeping on top of things here.

I've taken so many pictures, had so many thoughts and haven't been able to find a moment to write about any of them. Hopefully I'll have some time soon.

Hope everyone is enjoying their weekend!