20131230

The Drug War

To see who can have the most expensive medication. I don't think mine is tops, but it is ~$10,000/mo from what I understand - ~$5,000 now that I've switched to every 8 weeks. The pill to which I should be switching is ~$55,000/year which equates to ~$4,500/mo.

THIS: this is why you must have health insurance!

And, as always, remember that MS isn't a result of poor life choices!

Another double entendre!

Those Poor Mice

They really are lab rats...err...mice. Those poor poor bastards. They get...well, lets just reuse the article like ever other 'news' source, "To conduct their study, the researchers induced mice to contract a disease called experimental autoimmune encephalomyelitis, or EAE, which is very similar to MS in humans."

Now this is where I go with this information. I think about a research scientist just discarding dead mice into an incinerator when they're done being used. To those mice, it must be just like the holocaust.

That must be the job they give psychopaths, giving mice EAE. Or is it like punishment in the military? You were late! Inject those 500 mice with EAE. HFS! #LifeSucks But at least I didn't receive an autoimm....awwwww...now I'm even more sad : (

20131221

My Drug Problem

I've been thinking about the Tysabri/Tecfidera change that will eventually have to happen. And it's fearsome dark unknown that I enter. It's when I thought of this video from the roaring '80s.



If you couldn't figure out from the title, I love the double entendre

20131219

Watch Youtube Said Shelby

Lots of people are recording their reaction to Tecfidera. So OK, i'll try to allay my fears, as it is the unknown that seems to be the source of my concern.

But no, it is the usual, "This sucks, I'm having a terrible time and it isn't helping." C'mon people, I know s*** sucks right now. But you HAVE TO stay positive when you've got the MS*.

The last thing I want to do, though, is stay on Tysabri any longer with the PML risk I have (middle of the riskiest pool of JCV+ people). A little support and encouragement is all for which I am asking.

Isn't there anyone with a positive emotional response to Tecfidera? I'm moving to it one way or another, I can't stand the PML gun constantly held to my head.



*I know that is improper English, I'm trying to bring light to the situation.


UPDATE: It wasn't the youtube videos about which my wife was talking, it was videos on facebook.

20131207

As Deltron 3030 Said

"Crisis precipitates change."

I couldn't agree more. My JCV risk, as described in my last few posts, is high - a risk with which I can not live much longer. As I mentioned earlier, I've already decided to switch at my next neurologist appointment. I will also go to Tysabri every 56 days for the time being (instead of every 28 days).

That is my crisis and change. Decision already made. Yet I am so scared of having another attack/episode/relapse that I am absolutely terrified of going off of Tysabri. Actually, its not the fear of the relapse as it is diving headfirst into the unknown. If I knew that I'd be having a relapse X amount of time after stopping the Tysabri, It'd be easier to cope. As any MS'er will tell you, that isn't how this disease works.

It is the uncertainty that is the source of my pains now. The fear of the unknown. I realize it isn't healthy to fret over things which I cannot change, but I can't help but perseverate over what could be the future. From what I've read, some people are having such great success on Tecfidera. I hope I am included in that group. I'm not sure what I'll do if Tecfidera doesn't have the similar results. But my JCV load putting me at 1% risk of PML is just too damned high! And I don't even want to get into the PML discussions. That disease scares the living bejeusus out of me. If I come down with PML, if I manage to survive - a big if - I would be forever invalid. At least that's what I understand.

So I'm sitting here approaching a crossroad. I've already decided the patch which I will travel. All I can really do is continue to hope I don't develop PML; once I'm washed out of Tysabri, my PML risk is back to normal. I assume that is when I'll start the new treatment and see how that goes; hopefully well. Fingers crossed!

If only it was that easy. I can't help but constantly think about this upcoming medication change and the continuing of Tysabri (PML risk) until that time of change is over. And the rebound effect of coming off of Tysabri. And what if I become an invalid if I contract PML before the switch? What if the Tecfidera doesn't work as well as I hope? What if...

Eventually this becomes circular logic. Hopefully I've been able to adequately convey my concerns. If I could only express worry in a bar graph, it'd be 11 out-of 10 right now. Through the roof concern over the unknown. Guess I'll have to chalk yet another event in my life to a #FML moment.

One last question for you my dear readers: did you spot the meme references?

Well Then

I know I am dreaming. I made a conscience effort to try to remember my dream last night.

I can tell you this much: I can remember dreaming. About what is a different story. The memories were fleeting. I already do not recall about what was the dream. But at least I'm not loosing my mind by not dreaming at all. Apparently my decaying brain is still able to sort through the days events using dreaming, even if most of the time I do not remember even dreaming.

It was nice. Like I said, I can barely recall the dream, but to be able to tell I was having one was a relief! I am definitely making note to talk about dreams with my neurologist.

20131206

Very Interesting

I read a story of a person who switched from Tysabri to Tecfidera. He says he is having great success, which is reassuring to hear! What stuck me most, somewhere in his profile he said, "Possibly a key indicator is that I'm dreaming again." That's when the needle feel off the record. My jaw hist the floor. I was exasperated.

I can't remember the last time I've dreamed. At least remember having a dream, as I recall not dreaming will lead to insanity. Uh-oh. I absolutely, for the life of me, swear I've stopped dreaming. Something I've notice well before I even knew what is MS. Back in what was the college days, I remember that my dreams seemed to stop happening.

I never for the life of me thought that could be a byproduct of MS. It hadn't occurred to me since my diagnosis in 2007. Those were frantic and unclear days; not from college parties, but what turned out to be...MS aaawwwwww : ( There are a lot of things on which I look back and realize, oh yeah, that was probably my MS. But I'm on a tangent now...

The dream thing. Oh yeah. I actually just had my neuro appointment this week (1st week of Dec 2013), and won't be seeing him until July. That is absolutely something about which I must talk to him. I've already made note in my phone.

20131205

C'mon! Really?

I had my neurologist check-in today. And the easiest way to explain it is that was the worst I've ever felt after getting out of the office, including my MS diagnosis (I already knew I had MS). My day has declined into an abysmal disarray of incomplete and incoherent thoughts, none of which come to any sort of conclusion. Other than my decision to get off of Tysabri. Yes, today I've decided to leave behind the drug that has kept me symptom free for the last four plus years. Though not today, in June 2014.

It isn't with an easy heart that I am diverting course from my treatment on Tysabri. It has been great...I've been living a life like I don't have MS. I wouldn't know anything is different from the day I started this miraculous drug. But it is a proverbial deal with the devil. And my deal in particular was especially dangerous.

I found out my JCV antibody load today. Not a number but a spot on a graph. Down at the bottom of the graph were a few dots that increased the further up you went on the graph. Then came a dashed lined followed by a grey area and ended with another dashed line. Within the grey area were a bunch of · and X. I was one of the ·. X marked cases of PML.

I assume if you are aware of danger that is PML, you realize my conundrum.

My doctor said my risk right now was roughly 1-in-100. 1%. Odds with which I absolutely can not live.

When I heard 1-in-300/600 when I first started, depending on my risks, it was a chance I was willing to take. Now, I have no choice but to discontinue with the course that has been such a successful treatment. I've had no MRI activity during my treatment of Tysabri. My treatment on Avonex really sucked, and there was still activity on my MRIs. So here I am left looking at either Gilenya or Tecfidera.

I can't turn into an invalid, or worse, be ended by the very medication that was helping to stop my MS. I have until June to choose one of the medications above. Tecfidera is looking like the answer now, but things can always change. Until then I'll be changing my Tysabri treatment to every two months. The six weeks seems to be working well, as it is, so hopefully this will let the antibodies in to combat any JCV that may make it past the BBB.