So far so good! I don't have any 'before' to compare it to (as in, I was diagnosed and then entered the study as my first DMD experience). I was on a randomised double-blind phase III for 144 weeks. I injected myself with maybe/maybe not Avonex once a week and went to the hospital for maybe/maybe not study drug once a month. (Geeky details here: https://clinicaltrials.gov/ct2/show/NCT01064401)
Now on the extension phase (nearing week 72) I just inject myself once a month at home and know it's Dac-HYP. I think it was all along, but I won't know that for certain until I exit the study. (Geeky deets here: https://clinicaltrials.gov/ct2/show/NCT01797965)
So, I can't really say how my disease course has been changed as I don't have any real data points to compare it to. I had one active lesion in January 2013 with no perceived related symptoms. I've had 12 MRIs since I started and the rest were stable.
I will say I'm trilled with the modality. I inject once a month. Bam. Done. I've not had to take any medications on planes since I was unblinded (the end of the 1x weekly component). This is not a big deal for a lot of people, and I know so many people have no other option make it work, but I really like to think about such things as little as possible. I get my IUD changed ever 10 years, for goodness sake. Daily/weekly medications don't allow me to marginalise MS as much as I like to (not to say I'm in denial that I have it). I say, the more medical options the merrier. What works for someone might not for someone else. I mean, as much as I love what I'm doing, it's not great for someone with a needle phobia!
I've not had any relapses since January 2011, but I think what I consider relapses and what others consider relapses could be different. I have pseudos occasionally, reminders of past ON, unilateral calf spasms, fatigue, mood issues. But I file these under 'situation normal', just the average stuff you get used to even if it's still annoying. But it's been over four years since a limb stopped working, or an eye went blind, or my eyeballs look opposing directions (that was a good party trick). Right now, my bete noire is definitely fatigue, but I'm auditioning a few pharmaceutical options.
Hi Immi
I was going to ask the same, how is your trial going?
Nx
I see... Ok. How has that drug been for you???
Yeah, everyone was watching for news of the "BG-12" trials when I first entered the world of MS myself a few years ago. There were ZERO orals at the time, so we were all pretty excited. Gilenya was first out of the gate, I think, but orals were definitely a hot topic all over the forums.
Most drugs are trialled under generic or code names with the brand name being revealed as they get closer to FDA approval. For example, I've been on a on a trial of Dac-HYP (daclizumab high-yield process) since 2011. It's only recently announced that it will go by "Zinbryta" when approved.
So you will find a lot of early or official documentation or articles referring to the former whilst the patients eventually getting the prescription will likely only think of it as they latter.
Oh!!!! Ok... My husband forwarded it to me. I thought it was current.
Agree, that's my understanding too
Nx
This is not new, BG-12 is actually Tecfidera. I believe that was what it was called before it was actually on the market, which was sometime in 2013, as I recall...