I have been on quite the journey in treating my MS, over time I have tried and failed many forms of treatment. Although I suffer from a more aggressive form of MS and my options of treatment have only become much more limited over time but I haven’t given up hope that I will find one that works. I have been on Copaxone, Rebif & Avonex when I first started out about 12 yrs ago. Upon becoming paralyzed my drs admitted me and tried Plasmapheresis (blood exchange) it was successful! I was carried in but walked out in the end. When it hit me again not even a year later I was brought back in where they surgically placed a permanent line called a Tunneled Vascular Catheter in my jugular vein, we would be performing Plasmapheresis more often as needed. Shortly after placing my line and beginning this very aggressive and more intensive procedure it was decided that I would begin doing it monthly as a maintenance. I was termed “chronically symptomatic” and they felt it was the best approach. Although my lines didn’t always hold up and I required multiple surgeries to replace them it was in fact my best decision for my disease, the only thing that slowed it down. I remained on that therapy for over 7 yrs until I was no longer benefiting from it. Talk of replacing my line and becoming even more aggressive with it was happening but o wanted to move on, give my body a break. I had it removed and finally decided to give Tysabri a chance. I had to stop allowing my fear of what ifs control my decisions. About a year ago I went down the Tysabri path, it was not effective enough for me. Where do we go from here? My team of Drs were stumped but luckily a new drug intended for PPMS (Primary Progressive Multiple Sclerosis) *types of MS was released to the general population after 6+ years in trial. Now my first thought was NOPE, No ty! I don’t take newly released meds for at least a year if not longer. I was left with this, I don’t have the luxury to wait. I of course can do what I want but it was not advisable for me to wait it out. So I’m going down the Ocrevus path. I signed up and was approved instantly, I did a 6wk washout and will be getting my first half dose June 14th. The first 2 doses are half doses 2 wks apart to get my body used to the drug. After that one infusion every 6 mos. in between my Drs decided I will continue Acthar Gel Injections to help manage my symptoms, I have yet to experience stability of my MS on a DMD but an hopeful it can and will happen it may also be the answer for my Lupus as well. I am nervous but mostly so excited to continue adding to my journey, I will continue living life to the fullest and as positive as possible. ♡
With the support my family, I can do anything and because of them & their love, I will do everything.