Hello,
To finish off the trifecta of medications I have been on, I moved from Copaxone to Betaseron. Betaseron is yet another interferon medication that is a subcutaneous injection taken once every other day. When discussing next steps after the Copaxone debacle, there were a few more options on the table. Rebif was one of the more popular drugs that came up in conversation, but was too close in chemical makeup to both Avonex and Copaxone... so that was quickly dismissed. There was also a monthly IV infusion available, but dragging my behind to the hospital once a month to be hooked up to an IV seemed like a final resort.
So Betaseron seemed to be the best option.
For Betaseron, I would have to mix the medication (as I had previously for Avonex) and inject myself via an injection pen (as I had previously for Copaxone,) so this was a weird combination of the elements of my previous medications. I would continue to pre-medicate with Excedrin Migraine, and inject myself in one of the many rotating sites (similar to the Avonex, I was able to inject via triceps, thigh, stomach, and butt.)
The difficult part of both Betaseron and Copaxone was remembering what day to inject. I quickly found that reminders via computer or mobile calendar were the most effective (although my wife was an integral part of remembering when to take my meds.) The second most difficult part for Betaseron was injecting anywhere but my thigh and stomach, as I had to twist into a pretzel in order to properly align the needle (trust me... a misalignment is disastrous.)
For the first year or so, I seemed to tolerate Betaseron well. I had minimal site reactions and the side effects weren't nearly as severe as Avonex. Unfortunately, that began to turn as I built up more and more scar tissue in my rotation sites. I would try my best to avoid hitting close to a previous injection site, but I seemed to develop tough skin develop across the entire acceptable injection zone. This began causing some severe site reactions. I would have blaring pain for days after an injection (which was especially difficult after a butt day since I spend all day on my backside at work,) and had an awful time getting the pen to dispense the full injection.
I began to develop that horrible anxiety on shot day, much like I did for Avonex. The major difference was that Betaseron was every other day... not once a week; so I was in a constant state of fear of my medication. The injection difficulties led to more severe side effects as well. On days where I had an especially difficult injection (the needle taking an extra long time to dispense or excessive site bleeding) I would experience chills and flu-like symptoms that were unparalleled. As my wife can attest, I would be unable to warm myself and would shake as though I were laying on a block of ice in the Arctic Ocean. Being that I would inject at about 7pm every other evening, this made for many sleepless nights.
I was on Betaseron until recently (about 3.5 years total.) The site reactions and side effects were becoming unbearable, prompting another conversation on changing meds. I am currently going through a screening process for Gilenya (an ordeal in and of itself,) which I am actually kinda happy about. Gilenya is one of the few oral medications becoming more prevalent for the treatment of Multiple Sclerosis; and I am eager to begin and report on my progress.
It is definitely noteworthy to discuss the injector pen designed for Betaseron. In my last post I discussed the difficulty in dialing in the depth for injecting Copaxone via their injection pen, but neglected to mention the ease of operating the safety mechanism and trigger. The injection pen for Betaseron is the complete oposite. There is no mechanism for dialing in the depth of the needle, but the safety mechanism and trigger are difficult to use. There is a button that you must push while sliding the rear part of the handle towards the center of the pen in order to inject. This is difficult, as it takes a ton of pressure to slide the handle (which acts as the safety mechanism) prior to being able to depress the trigger button... and this can cause you to jam the pen too far into the skin and inject too deep.
I would try to hold the front of the pen while pressing the handle inwards in order to take pressure off of the skin, but this would require twisting in unnatural positions in order to properly inject. This was uncomfortable and could cause me to inject at a less than ideal angle. Sometimes I would forgo using the injector pen (manual injection was possible for Betaseron and has its' own set of instructions,) but I was never a fan of self-injecting (see my previous post on Avonex.) Icing the injection spot until way past numb became my best friend.
I will hopefully be starting Gilenya in a couple of months. I figure I'll be willing to endure more side effects (not that their are any listed that aren't indicative of the other MS medications) if it means a trade off for injections and injection site reactions. Here's to hoping that this all comes together quickly.
Thanks for reading
Adam
p.s. I figure I've droned on enough about more depressing stuff, so I'll try and break it up with another non-MS related post next time. Thanks for sticking with me.
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