In Feb. 2005, I went for my first Tysabri® infusion of a powerful new drug that was being used in cases of MS where nothing else had shown to be effective.
As I’ve said, there is still no cure for this disease; “effectiveness” in slowing progression is the goal right now. Unfortunately there is no proven test for that either. We rely on regular MRIs of our brain and spinal cord, examining results in comparison with earlier scans, to “guesstimate” progress or lack thereof. But I digress…
I had to be infused at a chemotherapy center, and I remember sitting there, feeling somewhat guilty and embarrassed that I wasn’t fighting for my life, ‘just’ my mobility and coordination. It was a Friday.
On Monday morning I was watching CNN, when I saw scrolled across the bottom of the screen that this drug had just been pulled off the market because it was implicated in several patient deaths from a rare and frequently fatal viral infection of the brain.
Shocked and feeling sorry for myself, I called in sick to work and spent the next few days on my boyfriend’s couch, eating pints of ice cream and watching the 24-hour cable news.
Since the suspension of the drug wouldn’t be lifted until 2006, my neuro went on to the next “drug of last resort” {in my case the chemotherapy drug, Cytoxan} which, sadly, didn’t seem to work, either, and he did not want to risk having that ‘on board’ with this.
Anti-bodies
Fast forward to Mar. 2011, and my new neurologist told me about findings that could definitively tell whether a person was even vulnerable to the infection or not.
She wanted me to have my blood tested for certain antibodies, the presence of which would indicate that they had been manufactured by my body in the past to combat a previous infection, like tonsillitis, for example.
if the antibodies had already been created in my body, they could be latent and then mistakenly attack in this case, which would leave me with an even more severe immune deficiency and vulnerable to this deadly virus.
In May, I got my test results back. I had tested negative and she excitedly told me that she wanted me to resume this infusion therapy as soon as possible. I was sheepishly and cautiously hopeful.
By now I had already talked to a lot of callers on the helpline who were on this therapy and reported that, while nothing else they had previously been on had worked, this did. For the most part, they were satisfied and I got the impression that doctors were happy to have it back, too.
However when I began to receive glossy marketing swag in the mail for that drug, I became incensed and posted a blog entry about how patronizing I found it that this company would try to get patients to demand this from their doctor.
Consequently, I got my first infusion in Oct. 2011 and it went without incident. Optimistically I requested approval to begin paratransit service to shuttle me back and forth to monthly infusions.
Hives
A few days ago, my husband took me for my Nov. infusion.
A few minutes into the drip I got flushed and then started itching uncontrollably. Alarmed, the nurse discontinued the IV right away, gave me water and a Benadryl, called my neurologist, then started a prednisone IV.
While at first I assumed that I’d be permanently prevented from this treatment, too, my latest readings suggest that this reaction would not be uncommon for a patient receiving re-treatment with it after an initial, short exposure, then a ‘break’ of therapy {like, oh, say six years??} followed by re-exposure.
So I don’t know what the next step is, but I will see the doctor on Tuesday {and wouldn’t you agree that this has been quite a year?!}.