Since summer of 2009 I have been on a mission to get any medication that did not involve interferon or any of the injectable preventative medicines. Including Copaxone, And Tysabri.
LDN was something I wanted to try, but by the miracles of US medical red tape no doctor wanted to sign off on it because if insurance reasons, and the FDA did not approve it for MS treatment.
So I waited, until I heard early 2010 that Novartis had a new drug coming out, Gilenya. An oral drug that I take everyday for the rest of my life… But it was not approved yet.
It finally got approved, but my doctors did not want me to take it because it. Was new and no real data was out about it, insurance companies were not covering it, and it was expensive as heck.
Well, it is 9 months later, fighting the system, and finally getting the red tape to work for me. Everything from long legal paperwork, and affidavits, tax returns, Opthamology exams, EKGs, blood work up the wazu, and a persistently patient attitude I got approved, and Novartis sent me my first 28 day pills.
Now I just had to wait for my date at the hospital so that they can monitor and observe my first treatment. Apparently this could be a scary thing, especially when I overheard a conversation I should not have had to hear about someone who just yesterday had a bad reaction to the pill.
Well since they are monitoring me, I may as well write about it. And I know everyone is different, and reactions are all different, but this is MY experience this far.
I was administered the drug finally at 9 am. The following will be updated for the next 6 hours.
08:59. 136/87-63
10:00. 117/78-60
At 10:30 my mouth is super dry, and I feel I need to eat, and my upper abdominal muscle seems like it is cramping.
… This WILL work.
