Back after a period of neglect

Hello,

I should first apologize for neglecting my blog for so long.  I have been caught up in a slew of projects, including some good ol'fashion hard labor at the old (actually new) homestead.  But I digress.

I've mentioned in some of my previous posts that I am hoping to begin taking Gilenya soon.  In fact, I'm hoping I'm getting within striking distance.  I have recently gone through a ton of screening procedures to start this dang drug, and I'm now awaiting word on taking the first dose.

I've never heard of a drug needing a screening process, but this one included:

• EKG
• Eye Exam
• Chickenpox Vaccine
• Full Blood Workup

This has been quite the pain.  I started this whole headache a year ago, when I told my doctor that I couldn't deal with the side effects of Betaseron anymore.  After some reluctant conversation with my doctor, a consult, and yet another EMG test, it was decided to try Gilenya (it was actually a tie between Gilenya, Tecfidera, and another medication whose name escapes me.)

Tecfidera, which is an oral medication, hasn't been on the market for very long, so I was hesitant to start something that was barely proven.  The other medication was a monthly infusion that needed to be administered at a hospital.  This wasn't a very attractive option, as I didn't wanna deal with needles anymore (let alone an IV every month) and getting to a hospital each month opens up another conversation I won't get into now.  Therefore, Gilenya was the best option.  This is where the headache really started.

About 2 years prior, I was offered the ability to begin a drug trial for a new oral medication for MS.  I wanted to enter the trial, but everyone was against it.  And I mean everyone... parents, my future wife, sister and brother-in-law, and my doctor.  I decided against it, but with everyone giving some valid points, I decided against it.

Guess the name of that drug?  Yup, Gilenya.

Putting that aside, I now had to do through the gauntlet of screenings.  I had to put things off until the recently for a few reasons I will not get into, but have just become able to start the first dosage.  The wording of the previous sentence may seem odd, but there is a reason for that.  The first dosage of Gilenya has to be monitored prior to beginning everyday usage.

Gilenya can cause a drop in heart rate upon the first dosage.  Therefore, they need to monitor a patient for the first 6 hours after the dosage.  This had caused some complications for older patients and patients with heart problems during the trial phase.  There has also been instances of macular edema recorded as well (inflammation of the optic nerve,) but has been very rare.  Thankfully, I have no indicators for either.

There had also been a mix-up as to whether or not I needed to get the chickenpox vaccine (which I had to take and required at least 2 months of waiting before I was able to take the Gilenya afterwards.)  There was also a mix-up with the EKG.  I had taken one, but too much time passed when I re-visited the issue and was forced to take a second.  Needless to say, this has not been a smooth transition.

The first dose requires me to be in the doctors office for at least 6 hours.  For anyone who knows that office, they will know this will equate to 6 hours of torture.  I will also be torturing my wife, as I need someone with me the whole time, so at least there's that ;)

I'll let you all know how it goes, but keep your fingers crossed that I am able to get this rolling.

Thanks,
Adam