Thursday, January 18, 2018

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!

Wednesday, August 02, 2017

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! 

Tuesday, June 27, 2017

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.

Tuesday, April 18, 2017

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.

Tuesday, January 10, 2017

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.

Friday, September 30, 2016

Tired of Tec

I think I'm done with tecfidera.  Ocrelizumab seems to have at least a name from the feds,  so approval looks imminent if not already done. I'm ludicrously exhausted. Honestly,  I give tecfidera credit for weight loss,  but I'm just hammered with fatigue, limping, cog-fogged... Really,  maybe I just improved because of the steroids when I relapsed. I feel like crud, unusually so.

I have no idea of it's working.  My neuro is happy I'm not on crutches now due to weak legs, but they sure tire fast! After all,  I work primarily with my brain,  not my feet, so I am more worried about cog problems than limping or not.

I'm not sure what else to do about the fatigue--already use adderall to stay awake, but it's not enough lately.

I don't want my bday to dawn when I feel this way,  and it is RIGHT around the corner!  Ugh, ugh, and damn.

Thursday, August 11, 2016

Cross-post: Lionel Barrymore and wheels on film

Wheels & Crutches & Canes, oh my--why I bother to research an old movie actor

This is a cross-post form my other, much newer blog: Barrymuch, Barrymore, Barrymost: Lionel Barrymore, obsessively. It's on a member of the well-known Barrymore acting family (Lionel's brother John is Drew Barrymore's grandfather) who for the last quarter or so of his life lived and acted in a wheelchair.  His popularity never seemed to wane--and this was in the 1930s, ladles and gentlemints.

He was a damn impressive actor and a very interesting member of a stupendously complex and flawed family, and he also held his own while in horrible pain physically.  I wrote this to explain to my (few) readers why I bother researching his work and life, especially if they're not familiar at all with disability studies.

You might find it interesting, gentle reader! If not, well, I'll get back to being more morose on this blog soon! :)
Lionel Barrymore as Dr Leonard Gillespie, left; Lew Ayres as Dr. James Kildare, right, The People vs Dr. Kildare, 1941