Right now I am sitting in the airport waiting for my plane to leave to Vancouver. Tomorrow I start my first day of treatment. So I believe that this is a good time to fill you all in with what I am going to be apart of for the next two years.
So when I went down for my first appointment with the neurologist at UBC he presented me with (hand cramps, another symptom) the option of being apart of a drug trial. This trial includes two drugs. One which is on the market for MS patients and it is a good drug called Rebif. The other drug is Ocrelizumab. Ocrelizumab is being studied all throughout the world and in many different countries. This drug is in Phase III of the trial. It has been around for about 10 years and been very very successful in treating relapse remitting MS. So this is great for me!
So Ocrelizumab is drug that is administered thorough IV approximately every 6 months. Rebif, the other drug that is apart of the study is self administered 3 times a week thought a self injector.. yippee, not! I am not impressed at all about that. I am not all that thrilled about needles to begin with let alone giving them to myself.
As a part of the trial I will be getting one of the two drugs and a placebo drug (Placebo:A substance that has no therapeutic effect, used as a control in testing new drugs.) So I will either get Ocrelizumab and Placebo Rebif OR Placebo Ocrelizumab and Rebif. This means a few things;
1. I do not know which drug I am on, actually no one does except for a random 3rd party that no one really knows about.
2. I have to "take" both drugs; injections, 3 times a week and also IV every 3 months.
This treatment will last for two years; starting tomorrow. I will have my first day tomorrow and get the first dose, which is half of the Ocrelizumab dose and Rebif. Then I will continue to give myself injections and 15 days from now come back to Vancouver and get the second half of Ocrelizumab. Then three months later and so on for the next two years. Throughout these years there will be constant checkups, frequent trips to Vancouver for the IV drug, many many many injections, lots or blood and urine tests, and hopefully LESS SYMPTOMS!
A few months ago I was thinking to myself how amazing it would be to not have any numbness in my hand for one whole day. One day. To be able to feel textures, and to feel normal again. It will be wonderful to wake up one morning and not think about my hand. I do get glimpses of that when I drive to school in the morning on these cold fall days. When my hand is cool/cold I don't notice that it is numb, it does feel normal. Someone a few months ago asked my why I drove mostly with my left hand these days, and I think subconsciously I don't like the added stress of holding on to the steering wheel with my right hand so it is dominantly my left hand driving. However when it is cold out I seem to drive mostly with my right hand. Strange? Yeah kind of.
Here is an encouraging fact about Ocrelizumab: In a phase II, 24 week, clinical trial, 218 people were split into groups receiving one of two doses of ocrelizumab (600mg and 2000mg), interferon beta-1a (Avonex) or placebo. After 24 weeks, the number of active lesions as measured by MRI scans was 89% lower in the low dose group and 96% lower in the high dose group compared with the placebo group.
This is Phase II figures and also a few years ago. But seriously at 200mg brian lesions were 89% lower? (If I am understanding this fact right) that is amazing. Especially since my neurologist said all of the other drugs available on the market would give me less than 50% change of working (lessening symptoms). There is no cure for MS.
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