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.

20131123

You Had Me Fooled

Tysabri, the monoclonal antibody which is used to treat my multiple sclerosis is not entirely human.

Wait...let me start over.

When I first received treatment for my MS, it was Avonex. I took it, and it was pretty miserable (side note, I heard the MS pill tecfaderia has similar side effects) having to take a weekly spear to the leg and having the associated flu-like symptoms. It really wigged me out when I found out it was a naturally occurring substance produced in mamalian cells. Poor monkeys (I assume). Never-the-less, it sucked balls and wasn't producing the results for which both my neurologist and I hoped.

Then came the Tysabri, which wasn't really a better solution for getting the medicing: it is in a hospital (or infusion center) where you get hooked up to an IV for a couple of hours. Needles, ugh. But, after time I realized that it wasn't so bad to deal with a once-every-28-days needle stick compared to the once-a-week impaling and flu-like feeling. Plus the added bonus of no noticeable side effect* and I was sold. I was under impression that monoclonal antibodies were antibodies occurring in humans - bzzzz - WRONG! It is a human cell that is, IIRC, genetically engineered with mice antibodies - 95% human 5% mouse.

It was Swedish scientists that revealed this fact to me in this report (CAUTION: Word document download).

* Once, and only once, did I experience any side effects from Tysabri. I felt really tired for two days after my treatment.

20130919

I'm infused

Had my tysabri infusion today. Michelle hit me in one stick. Kudos Michelle. I have such confidence in you; that's hard to say as you're a packers fan. But we all have faults. Michelle had a meeting or something today, so I actually had to have a new AIC nurse (new to me). Cheryl (i'm sorry if that's incorrect, like I said, I'm absolutely horrible with names).

None-the-less, here is today's pic:
Needlestick

The worst part was the bleeding once they took out the IV. I bled through five things of gauze. A 22 ga needle was used instead of the typical 24 ga. Evidence:

20130817

What's The Issue?

I've been having a hard time with my left leg for the last few years. My knee constantly aches and my hip, less than the knee, also tends to ache. I am not a doctor nor a neurologist, but I'm pretty sure it's a MS problem and not an aging issue.

If you're reading this and a neurologist, you're probably in the same boat as my neuro. For this I do not blame him. I've been describing the pain that bothers me most, and not the pain that is most relevant to him.

The problem seems to have started when my gait changed after what was hopefully my last attack a few years back. And it's probably related to my left calf now being tight constantly. Perhaps I wasn't relaying that information properly to my neurologist, focusing more on the joint pain; at the time unaware I was throwing him off. But I am a bit concerned with how quickly he seemed to discount it as a byproduct of getting old and not probing further into the issue.

So here is what I'm going to do with my next neruo appt: I'm going to make mention of my knee and hip pain, and fully explain that I think it's a problem with my left calf tightness which never goes away. If he discounts it again, I'm going to have to find a new neurologist. I've been dealing with this for too long to have my doctors just discount my issues as aging problems. I want nothing other than to have him concur that my issues are MS related at this point. I'm not looking for drugs or disability. My job offers neither (I'm a stay-at-home dad). I just want him to acknowledge that the issue I am experiencing is a MS issue, and not an aging issue.

I'll give you a quick glimpse of my problem. My left calf muscle feels like it is wound up at all times, even when I stretch it or exercise it. This causes now near constant pain to some degree in my left knee and hip.

I am a grown man, I know better than you what a MS issue is and what an aging issue is...with my own body at least...in this case (In other words, I don't but that doesn't support my point). I hope that the failing here is my inability to convey my issue rather than you discounting it. I really like you man, but if my needs are not being met, I'm going to have to go shopping. I can tell you one thing you will never experience: The utterly frustration of complaining to your neurologist about a problem that I am having to only have it discounted as a an aging problem.

20130815

I hate MS

Yes, Multiple Sclerosis, but in this case: MicroSoft. Why did they have to pick a name that abbreviates MS? Every time I see MS I now think of Multiple Sclerosis, not MicroSoft. Good job picking a name that has an abbreviation synonymous with slowly losing your physical and mental abilities, jerks!

20130813

Vampires!

Doctors are vampires, every one of them. Today I had to cough up (not literally) 9ml of blood to satisfy my neurologist, or more appropriately, the stratify-2 study. Apparently they can determine your likelihood of developing PML based on your JCV antibody levels. If you're below a certain threshold, you're pretty much in the clear*. Here's to hoping I'm below that level also, and don't turn out to be the one unlucky dude.

20130807

I think I'm feeling better

I had my tysabri infusion today around noon. I was hoping for instant gratification, but alas, that did not come. I've still got that ripping headache, and generally I'm out of energy. I'm hoping a good night's sleep will take care of this.

20130806

Six Weeks...Too Long

Six weeks in between my infusions is rough. I'm desperately awaiting my infusion tomorrow. First time I've ever actually looked forward to it. Well, not really forward to a needle stick but that ohhh sooo good molecular adhesion that Tysabri provides. I've had a rough week. My energy is way low. I had trouble during my bike rides lately, just peddling on a flat surface seems extra difficult. I've had a horrendous, increasingly worse headache over the last week that makes concentrating so difficult. My stomach has been uneasy for the last week. Though I'm not sure if that's from a New Belgium beer tasting last week or just general feeling ewww. I'm tired, so tired banging out this post is difficult. I can't wait for my head to hit the pillow. Yeah, that's a good idea.

C'mon Tysabri, I can't wait to have you coursing through my circulatory system at full strength again. I miss the normality you provide. I hope I get used to this six week thing before December.

20130627

How Tysabri Works

Adhesion molecules


20130622

I just thought I was lazy

When I was younger, mid-teens to mid-twenties, I just thought I was really lazy. Compulsively so. So much that it was a force I couldn't fight any more than I had unknowingly done thus far. Then reality set in...

Turns out I had MS.

20130526

I'm in the majority



I choose the risk of death via PML to effectively combat my MS. It's a common feeling amongst MS patients on Tysabri.

I am not alone on this cliff that is treating my MS with Tysabri. I hope, as I assume so many others on this drug do also, that I may never fall over the cliff. My neuro has reduced the frequencies of treatments from every 4 weeks to every 6 weeks. This is done in the hope that it will allow antibodies to pass the BBB and prevent infection of my brain by the JC virus, which in turn brings PML - and that ain't good. Let's just say all those years of not sniffing glue will have been in vain. That is what I am willing to risk to stop the progression of my MS.

20130505

Walk Ms 2013

We walked in walk ms 2013, after returning from our absence of last year. It was our usual walk, like nothing changed....except for the 11am start  time., which i greatly appreciated

20130503

I'll finally be recognized

At Walk MS, they are providing to people with MS an "I walk with MS" T-shirt.

Finally I will no longer blend into the sea of supporters*. I won't have to think "myself" when they hand me the T-shirt that has I walk for __________. Nope, the NMSS has realized that we've gotten a hold of drugs that stop the progression of MS and we want to walk!

*Not that supporters are a bad thing. In fact, I really appreciate what they do. But I am a sufferer, not a supporter. At least they'll recognize that this year.

This post, as most others, has been cut short by the presence of my two children.

20130415

(Re)Mylenating

From skin cells. Promising, except for the injection to the brain.

20130409

Son of a *****!

As Homer Simpson says, "If it weren't for bad luck, I wouldn't have any luck at all." Though, I do doubt that statement originated with the Simpsons, that is the easiest person for me to cite.

But I digress...

As it turns out, with my birthday being during the last week of april, that people born in may have a higher chance of MS (or says a study).

20130403

Another infusion down

In fact, dr. K is moving my infusions from every four weeks to every six weeks.

20130327

20130325

You are not alone Ana

I know the pain from which you suffer. Literally. If you've ever read this blog, you know that I also suffer from Multiple Sclerosis. I also live in Illinois. I've also experienced the flu-like symptoms you get every week (or more, depending on the drug). I've contacted both the MPP and my legislators about legalizing marijuana for medicinal use.

All to no avail.

Like you Ana, I have to resort to body destroying chemicals to ease my pain. However, unlike you, I haven't had a reason to stop my medication. In fact, it gets better. I've escalated to Tysabri. It has alleviated a lot of the problems associated with the ABC injectables and effectively put my MS into remission.

None-the-less, I still suffer from the pains from the nerve damage associated with Multiple Sclerosis. It isn't fun. And I still petition my lawmakers to pass medicinal marijuana. With the latest bill to go to pass committee and go to the Illinois house, all we can do is have hope. Hope that our state legislators will have enough compassion to listen to sufferers like us and pass a law that will bring relief to people like Ana and I.

Oh yeah, to any haters, know that nerve pain is NOT alleviated by painkillers. Nerve pain is mostly f***ing horrible.

20130322

My Veins Are Running In Fear

I have a nasty physiological reaction when a needle comes out, my veins go away (from the surface of the skin). The staff @ the NCH has taken to using my AC vein.

Antecubital Vein

20130314

MSer plays for NBA

Like the title juxtaposition? Yeah, me too!

Although it's only for ten days, Chris Williams is the first person known to have MS to play for the NBA. Grats duder, while most people buy cars and houses, you can buy MS treatment - thatch some expensive s***!

20130221

See Good in Bad

It's my new mantra I'm trying to follow and my disease it fits perfectly. With MS, when you typically get your diagnoses, you aren't too old to be helped.

I'm just happy they developed medications for RRMS around 15 years before I knew I am in that category. EVEN THOUGH THEY'RE CRAZY EXPENSIVE. Thank you insurance, and thank you Obama care for eliminating the insurance caps, or whatever you want to call them!

Sometimes it feels like the world is out to get me, other times it feels like the world is perfectly made to suit my needs.

20130217

My wife's dropped gem

She said that after you are on Tysabri for awhile, you should start receiving shares of the corporation(s) that make the drug. BRILLIANT! But we all know that'd never happen.

Back to Biogen

The Idec is eventually taking full control of Tysabri from Elan. Elan is claiming tax reasons.

Now both of the drugs I've taken for my MS will be from Biogen. My old drug? The archaic Avonex, which is a once-weekly IM injection.