Category: DMT

Ocrevus was the most recent medication brought up to me when the great Dr. K last talked about finding a Tysabri alternative. Once again, Tysabri is working absolutely great for me, and I’m in no hurry to switch off it. But given all the safety issues, It’d be remiss to not even consider an alternative. The great Dr. K hasn’t yet given me the efficacy rate of Ocrevus (or I forgot), probably as it’s so new, however he did mention that it is proving very effective for those who take it. Something to consider, but I have that old school ‘if it ain’t broke, don’t fix it’ attitude (unless it’s involving technology).
Ok, so what is Ocrevus? It is a humanized anti-CD20 monoclonal antibody. Yeah, what? Again? I don’t make this stuff up. I’m not that familiar with it, but here is what I take. Ocrevus binds to immune B cells via the CD20 receptor and kills them.  Wait? That can’t be good? Except when your own immune system is attacking your CNS, it’s probably a very good thing. And it is proably why I saw all those mentions of being immunosuppresed  for a bit while starting it.
As for frequency, that is where this drug seems to shine.  You only need to receive Ocrevus twice-a-year. Every six months sounds rather nice. I’ve mentioned before, many times actually, my needle anxiety and this would make for four less infusions per year.  Better than the six infusions per year, which isn’t a problem for me – anymore at least. The post-infusion danger zone seems to be longer on Ocrevus (24 hours observation) versus Tysabri (one hour observation). On Tysabri, they have me sit in the ambulatory infusion center room for an additional hour to insure I have no reaction (should happen for everyone on Tysabri, unless your nuero says you don’t have to be observed). With Ocrevus, I imagine they send you home on self-watch for reaction symptoms after a bit of observation. Though, I am not yet sure if they keep you for a period after infusion.
Ocrevus does carry the same brain destroying risk as Tysabri: PML. Since it also has a PML risk, I will stay on the miracle MS drug Tysabri for as long as possible. It is working great for me, I barely realize I have MS because of it. But if I ever need to switch to another medication, it will probably be Ocrevus. At this point in time anyway.
[myad]

Tecifdera is kind of special to me.  Not that I’m on it. I almost switched from Tysabri to Tecfidera under the great Dr. K’s suggestion. He cited that there was no reported PML cases (at the time) as the reason for wanting me to switch. Boy, I am seriously glad I did not make that switch.
Dr. K said, if you recall from earlier posts, Tysabri is seen to have ~80% effectiveness at reducing exacerbations (100% in my case). Whereas Tecfidera has only ~50% effectiveness at stopping flare-ups. Plus Tysabri is, I assume, engineered in a lab in a far away land. While you can see train cars going by filled with Dimethyl Fumerate. Yet they charge almost as much as Tysabri for it. Probably because of drug testing/safety and whatnot, but it just doesn’t seem right how much they charge for MS medications when they roll by en mass on a train…but that’s another post.
So yeah, the big point that was turning me on to Tecfidera is that it’s a pill. No needles…sign me up! Except for that lost efficacy. And it turns out that there is PML risk with Tecfidera too…perhaps from earlier drug interaction? I’m not exactly sure. Not to mention the other side effects Tecfidera can cause.  I am just glad I did not make that switch. Seriously glad, as greater effectiveness plus once-every-two-months dosing isn’t that bad…even I could deal with the needles that infrequently. And I mean it, Tysabri is working like a charm for me. So I stuck with what I know, and I am very happy with that decision…thus far.
And it isn’t the last alternative I’ve been offered, which of course I’ll try to get to in the next post.

AKA Tysabri. My MS drug of choice. And it is kicking butt and taking names!
Tysabri may be one of the most effective medications in fighting MS. But it does have a rather hefty side effect possibility. I’ll get into that later.
What is Tysabri. It’s a monoclonal antibody against the cell adhesion molecule α4-integrin. Yeah, I’m with you…WHAT? Simply put, it stops the transmission of immune cells through the blood-brain barrier. And that is all I can really say about this miracle drug, except that whatever it is doing seems to be working outstandingly for me. The great Dr. K said that it has about 80% effectiveness at stopping relapses, but in my experience it’s 100% effective (and I say this with my fingers crossed). Aside from the fact that it is used for Crohns patients and is being explored as a cancer treatment. There might be some use to that as chemotherapy used for MS patients experiencing a exacerbation. But as always, I digress.
Tysabri is effective as can be, this much is true. I haven’t had an attack/exacerbation/flare-up since I’ve stared. My wife AND the great Dr. K both said they have not noticed any disease activity on my MRs. YES! The lack of side effects is nice, especially when I got switched to once-every-two-months dosing, which allows a bit of immune cells though the BBB to fight any JCVirus that may have slipped through to prevent any occurrence of PML. The post infusion lethargy doesn’t happen anymore since the switch to the longer dosing schedule. And that is the only side-effect I’ve noticed while taking Tysabri. A world better than the at least one-day-a-week of feeling like you’re fighting the flu while on Avonex, or the once-weekly stick of a needle. Plus Tysabri is way more effective!
But there is a dark side to Tysabri. I’ve mentioned it before, and it is scary as can be. The side effect, PML basically destroys your brain. It erases you from the inside. I’ve mentioned this before also, but is worth repeating. PML is what killed a lot of AIDS patients in the 1980s and (at least the early) 1990s. Yes, it is a very scary prospect for me. Something I contemplate a lot. A whole lot. But with the effectiveness of this medication, plus the great Dr. K. telling me that PML risk seems to decrease the longer one is on Tysabri, it is a risk versus reward situation. I’m dong well, keep me on it, right?
Well, that’s where the other part of the dark side of Tysabri comes in. I possibly would’ve reconsidered it if I knew about this first. Dr. K only mentioned this when he talked about switching to Tecfidera. I never switched, and I’m happy with that decision. It is when a person stops using Tysabri they experience what is called a rebound relapse.  A bad relaspe from what I take from Dr. K. Effectively, a Tysabri holiday or break (or just giving up on it) will allow your immune cells to cross your BBB…with a serious vengeance. And the resulting flare-up will likely kick you up a bit on the EDSS. But ultimately, I took the PML risk to stop the progression of MS. And that it has done.
Tysabri is super effective, and I wouldn’t want to stop it given the choice. With the rebound relapse issue, for now, I am stuck on Tysabri. Not the worst of situations, at least at this point.
So yes, I did not know the dark sides of Tysabri when I first started it. It was a crazy time and I wasn’t thinking as clearly as I should have (can you blame me?) None-the-less, Tysabri has been one helluva DMT and I’m glad I got on it when I did. It put the brakes on my MS progression and has allowed me to live a life almost as if I didn’t have MS, aside from the once-every-two-months infusion. The six times a year I am reminded that I suffer from a serious neurological disorder.
 
[myad]