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.

Happy (?) New Year

Well for my first post here of the new year, I do want to wish my 2.5 readers a good, joyous new year with healing and love. Having said that...

Good lord, 2016! And I just mean for myself. My first relapse in about 7 years, struggling to get that under control, and almost succeeding, first case of optic neuritis, lots of cog fog...and no, I still don't think Tecfidera is working. And now, instead of the FDA approving Ocrelizumab for RRMS on December 28, they're pushing the decision to late March, to better look at manufacturing issues or what not (thankfully, not over safety concerns). Ever since the end of that Phase II trial I was in for it, I have been waiting for its approval...annnnnd I'm still waiting. PAH!

I aged a great, great deal last year, measure not just in the incredible increase in gray hairs but in my frustration with this stupid disease. I honestly don't think, given my career, that being able to walk is always the primary concern for me. I CAN'T THINK AS FAST I ONCE COULD. And without bragging, I can say I was and basically am still a very rapid thinker-- it's my job, it's what I've done my whole working life, it's part of my educational training, and it's me. I enjoy solving problems and moving on, I actually enjoy multitasking--

--well, I used to. And I am truly sick of people laughing and saying, "ha ha, well, now that just means you're like one of us" (I presume they mean "normal", non-MS, non-brain intensive-career people).  Well if I am, then I think it bites. I don't want to be "normal", I never have been, and even the MS can't make me normal; it just makes me feel broken sometimes. I have made a couple of "forgetful" errors that could have been dangerous (the classic left the stove on one didn't cause any damage) and it's frightening to me, even if yes, other people do forget things now and then. It's not the same, or it certainly doesn't feel the same.

I presume a few out there can relate to this. I've made some adjustments and I have a wonderful boss and coworkers who really, really are helpful and patient. So I know I am very lucky, even if my job is grant-funded and we're up for renewal in what could be an ominous education-funding year. I have insurance, a partner who is incredibly patient, and some lovely cat and dog children.

But I also have MS, and yeah, a lot of last year, it really DID have me.