Ocrevus 3

...is almost done. No problems so far! Hope it stays that way. No major infusion incidents. Hungry though!

Ocrevus once more, tomorrow, and some news..

So I’m off again tomorrow for an Ocrevus infusion—I tolerate it well and I think it works. Here’s some info on possible secondary positive effects of it! Ocrevus depletes T-cells (etc)

This seems exciting news, though it is a small study. I hope the data is borne out overall. For me, and I hope for many others, Ocrevus works wonders, and I encourage people to do some research and maybe, if you’re thinking of it, contact your Neuro and/or nurse about the copay assistance program.

Happy new year, by the way. Hope it has dawned well for a lot of people out there.

Ocrevus month, yay

So July 18th was my 2nd fulldose Ocrevus infusion, or my one-year anniversary. I was overdue, I think, but it'd also been a wildly stressful summer at work and psychologically. I felt i was fading mentally as well, but who knows with the south Texas heat!

Nothing much happened, except I find myself annoyed by the infusion center's noise in the morning. Pretty much a standard infusion--first hour or so minor chills, then it went away. I'm more annoyed my neuro is retiring, so now I have to jump hoops with another neuro who founded the "ms center" at my hospital, though I can't tell they do research or really anything else. She's much younger than my last neuro, with only a few publications, and that does give me pause. I guess I should feel fortunate the nurse is remaining! :)

I hope others have been able to get on and find Ocrevus useful. It's useful for me, though I do think I may have progressed a little bit. I'm definitely more annoyed by the whole MS thing than I ever have been before, even when I had to use a cane all the time. Go figure. The worst part is just feeling like no one understands.  But I think many others out there feel me on that!

I love the little teddy bear bandage! :)

Ocrevus full dose #1

3.5 hours in to my first full dose of ocrelizumab. Going well, and happy to have everything align so I can get it done. Brief delay due to our ridiculous ice storm in San Antonio!  But all goes well now.

I have been more than usually tired and I'm guessing this will help out. A little leg weakness as well, but most recent MRIs are stable. Now, I did test positive for JC virus antibodies, but it's pretty low. I'm being pretty positive about the MS drugs--though I'll add modafinil is not working well for me. May have to go back to the speed--er, d-amphetamine salts for lassitude.

Again, a 10.00 copay due to the pharma company's initiative. EXCELLENT. I would recommend anyone trying to get this to look into the program. It goes on forever, as long as you are eligible. Seems most are eligible, but it's also helpful to have a good MS nurse working with your neuro to get the hoops out of the way.

Another hour or two. And I'm starving. But they have a keurig and snacks, so it's not half bad.  Y'all enjoy the day!

Ocrevus 2 & onward

I knocked out the second dose about 3 weeks ago, and I felt fine though I think I made the nurse nervous... Heh. But I'd say it was okay. January 3rd is the next one now.

I do think I feel some joint pain and a little leg pain now, but I think I felt that after infusion when I was in the clinical trial starting 2009. The leg pain feels like a shin splint. Just startling. My low back hurts a great deal, but I've a lot of back damage that had nothing to do with MS.

A bit of a cough, but I'm not sick, people say I look better, and my body has  more energy. I recall it took a couple of months to really feel a change, but then poof! I really felt better!

With copay assistance, the total for each infusion was  10 dollars. Yup. I do hope people who want to try it will look up the program. And good luck to us! 

Ocrevus #1

FINALLY! After several years off drugs for my RRMS, through trying Plegridy and Tecfidera, I'm finally back to get ocrevus,  clinical trial for which I was in 2009-2011. It worked spectacularly too.  So I'm excited about this, and amused by the infusion center I'm at. I have my netbook, usbs of silent films, and my lucky Lionel Barrymore as Rasputin shirt on. :)

Let's see how this goes! And yes I did apply for and recieved the copay assistance---ocrevuscopay.com, if you're interested.

Ocrevus...it's on!

 Hello you gorgeous phase II clinical trial drug of my life,  you...

It's on. Oddly,  my Neuro who prescribed it is leaving the hospital soon,  where my Neuro who got me in the phase 2 trial for it left that hospital not long after the trial there ended. Either way,  I'm grateful to both.  Yes,  there will be a pharmco discount plan right off.

So. Bloody. Thrilled! Let's do this thing! Besides, Tecfidera doesn't seem to be doing much.  So there.