Starting an MS drug soon – Gilenya

I spoke with my nurse today. Yep, I have my very own RN who I can call anytime I want. Luckily I passed a blood test that allows me to start an MS drug called Gilenya. I have to pass two more tests too but after speaking with the nurse today I’m pretty sure I’ll be able to start the drug even if I fail those other tests, they being an echocardiogram and an eye exam by a neuropthalmologist. If I don’t pass the heart test, then I have concerns even bigger than MS haha. the eye test is to check for macular edema since the drug can exacerbate that condition if I have it. I asked if it was really necessary for me to have the eye test since my stupid eyes are broken anyway so who cares, but the nurse , while she laughed, admitted she wasn’t sure. When she mentioned macular edema it made sense though, since edema is swelling so who knows if that would cause pain or maybe make my eyes bulge haha. That’s just guessing though. I’ll take the stupid test. I’m hoping to see the same neuroopt I saw when I went blind. He was fun.

Soooo, once I have those tests, which I’ll be setting up this week, the stupid holiday was really bad timing I’ll have you know, then I can set up an appointment for my first dose of Gilenya at my neurology center. I have to be monitored for six hours after taking the first dose since it drops the heart rate which can be dangerous for some people.

I’m pretty excited to get started on this after talking with my nurse. It’s been out for four years but when I first heard about it it was brand new . It’s had time to show what it can do and the results have been good. It’s not a cure for MS, but it slows the progression of the disease, making relapses less frequent. There also doesn’t seem to be too many side effects but the website is pretty terrible so I wasn’t able to read too much about it on there. It’s also the website to help sell the drug it looks like, so it’s not just cut and dry info. It seems rather kitchy in fact. I looked it up on to get at least an overview of it. It looks like I’ll have to have my blood monitored to check my organ functions but that’s about it from what I could tell. I’m sure more will be revealed but the fact that my neurologist chose Gilenya out of the three options he presented is good enough for me.

I’m pretty excited to get started and just hope appointments can be set soon for the tests I have to take. I’ve been really impressed with all the medical people I’ve encountered over the last few months. None of them have scolded me or judged me for not being on a medication for the MS since 2008. I’ve explained to them all that when I went blind while on a medication, I got really angry that injecting myself every other day and having no quality of life on Betaseron didn’t keep me from going blind so I stubbornly stopped. At that time there wasn’t a better option than the injections that were popular for MS treatment.

I am very very happy with my medical team, that’s for sure! I also like that I now have the addition of two RNs. The nurse I spoke with today was just happy I’ll be going on something. I am, too.

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Filed under NaBloPoMo 2014, spoons

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