Rebif was one of the worst experiences in my life. I had 2 exacerbations in the 3 month period I was taking it. The exacerbations left me barely able to walk or function. If I owned a wheelchair I would have been in it. I dragged myself to and from the bathroom multiple times during that period.
They say it can take up to 6 months before the worst side effects wear off, well I didn't have 6 fucking months to wait and hope it got better. It was tearing me up. The shots were awful. After the titration pack you go up to 22mcg, things really got bad. The shots got more painful. The injection sites were bruised almost until it was time to inject in the same area again. Imagine for a second having big bruises that are tender to the touch on both legs, under both arms, both sides of your stomach and above your ass... every time you try to move you are reminded you have ms and your shit hurts.
So the shots themselves were shitty, then comes the side effects, the flu-like bull shit. I played around with the injection times. I was taking it before going to bed for a while, then a MSLifeLines nurse said it takes up to 8-12 hours for it to fully take effect so I should take it earlier in the day. The medication didn't care, it was a big fuck you no matter what time. It still caused me issues sleeping the entire time.
The next day after an injection was completely fucked. I would be so sore I could barely move. It was getting so bad I started dreaming that I was being held down and fucking beat up like a bunch of thugs were jumping me and then waking up feeling like I had been in fight. When that became a nightly dream I had to quit that shit.
I told my neurologist I was quitting it no matter what anyone said. I then requested to get put on Gilenya. He respected my request and started the process.
I did the pretests which include blood work, an EKG, and an eye exam. I had no issues with any of that stuff.
Gilenya got in touch with me, gathered some info and told me I would get the medication for free. My insurance specialty drug copay is $250 so I am thankful that they are giving it to me for free.
Three months now on Gilenya and no side effects. No issues, no complaints. I had some leg weakness at the beginning but I started taking it shortly before going to bed so if there is a side effect, I am not feeling it. I have the normal every day bullshit that comes with having MS, but nothing is magnified by the medication.
I want to make sure I am clear about a couple things regarding Rebif.... I was able to also get that medication for free thanks to their financial assistance program. Also, the MSLifelines program is top notch. They have nurses and people that are always available to talk at any hour of the day. You are assigned a nurse that calls every couple of weeks to check in with you. When you call them, that same nurse is there for you. So I have no complaints about the program and its nurses, but the medication.... fuck that shit.