Hello. I was recently diagnosed with Relapsing-remitting multiple sclerosis (RRMS). Luckily for me it was caught early and I was able to leap onto medication before the lesions had a chance to spread.
I currently take a daily dose of fingolimod (as hydrochloride ((GILENYA)) 500 mg. Between the early detection and medication, I am still pretty capable and mobile, with only slight gait issues, waves of dizziness and the fatigue.
THE FATIGUE. No one ever tells you that, above all, this is what you'll be dealing with and what will eventually ruin your life. I am 50 years old and have had to stop working/take a disability pension merely because my brain shuts down - HARD - after a few hours, let alone a full work day.
I am incredibly fortunate, I know, to live in a country with public healthcare and a decent pension system. My gilenya costs me, on average, $6.00 a month. Not bad considering it has a full cost of $2200.00!! However, my wife and I are considering moving back to the US and I am TERRIFIED that I will not be able to afford my medication. We have researched, read, and fretted but I am still no closer to an answer.
Canada has a generic for this medication, but I think the US wants to block us from buying AFFORDABLE meds from across the border, north or south. If anybody currently living in the US with MS, who takes this or a similar mediation, can share with me their stories of how they have learned to cope? What opportunities were out there/support programs to assist with the sheer cost of living with MS in the United States?
I'll be contacting the Multiple Sclerosis Society (https://www.nationalmssociety.org/) to gather information as well, but I couldn't think of a more reliable source for information than from those who were forced to endure as well.