Three needle sticks today. Shy of the record four sticks. Wasn’t terrible, even with the needlephobia.
That was fun. Veins in my left hand is the winners it seems.
As I mentioned before, my infusions happen every two months/sixty days. Most of the time I’ll get a bit worn down a couple of weeks before being infused with Tysabri, but this time the spasticity in my calf was intolerable for around the last few weeks prior to infusion. Deep thought was off the table for that period of time too.
Getting infused with that sweet Tysabri
Already my calf is getting less spastic. It isn’t better, but give it a few days and I’ll be off my baclofen and life will be way easier. I’ll be able to think too – hopefully – I’ve still got three kids in the house including a two-year-old gone wild.
The nicest part was my wife getting my appointment moved from 14:45 to 10:30. That means I get to have an awesome hospital lunch. Yeah, it may be hospital food, but at least it is food to have during my infusion. I was gonna stop and get a big old authentic steak burrito if my appointment had not changed. At least I didn’t have to stop to get food.
And for a bonus, my first public video on youtube: I apologize for the terrible audio. Go easy on me.
Yes, the second month of this blog’s second incarnation. Woot. Although I think that three posts per week has reduced the quality of the content on this site, IMO. It is OK, as the blog was new (again), and I needed to get it filled with content. And I touched on the basics of Multiple Sclerosis that most directly affect me. I hope it is coming across.
I’ll be posting a bit less at this point. Probably once a week and maybe once on the weekends. Still figuring it out. I’m trying to find a way to post in a meaningful way yet not let it consume all my free time. Three times during the week was consuming my week – not easy when you’re the primary caregiver to three children..and have MS. So we’ll see what a new schedule brings.
Attack, episode, exacerbation, relapse.
I do dislike the last term. Makes it seem like you’re dealing with illicit drug problem
All of these terms are used to describe an MS event. And I’ll lead off with uncertain to describe episodes. If you’re having an attack, your brain is most likely being damaged. Don’t worry, it is not as bad as it seems. You think brain damage and you think of someone who was in a seriously traumatic automobile accident or a major workplace mishap. No, it likely won’t be that. We with MS get our brain damage in much smaller doses. Micro doses if you will. and that is why medication to stop progression is so damned important in my less than humble opinion. But, as always, I digress.
Like I started, exacerbations are uncertain. Anything but. You could have an episode, like my first, where I thought I was having loss of equilibrium in my ears as my balance was slightly off. It was such a problem I even went to a doctor. I always think he knew but didn’t want to disclose MS as I didn’t have insurance at the time. I was starting a new job and insurance lapsed without the COBRA coverage. Young and dumb. It was nothing but time to allow that episode to heal away. And that it did – seemingly – resolve completely. I had no idea at the time of my Multiple Sclerosis. I thought it was a bad earache
My second attack was quite the eye opener. It was a fuzzy time, as my memory seems to have suffered a lot in that episode. I remember it mostly as being bedridden as I was so off with my balance. My vision doubled. Not in better eyesight, as in I was seeing double everything. Take my advice, don’t drive in that state.I knew at this time I had MS, yet had never knowingly experienced such a serious exacerbation. When it occurred – and it hit hard – I was more capable of dealing with what was happening to me. Good thing too, I was absolutely out-of-action for about a month. I ended up taking a three month sabbatical from my job because of that MSBS. Thank you FMLA.
As I mentioned I had already known I had MS and was receiving the care of a MS neurologist. He put me on a steroid, Solu-medrol. I’ve mentioned it before, so I won’t go into too much detail other than IT SUCKS. Especially when you have to drink it. DO NOT TAKE THAT OPTION. And expect to put on some weight. Perhaps a lot. I’ve never experienced a hunger like that,.
So hopefully I’ve explained what an MS attack can be like. There are extremes. From barely noticeable attacks that you mistake for something else to jaw-dropping, life stopping, making your body unusable for anything but life-support exacerbations that are breathtakingly momentous. (that last sentence kind of reads poorly, sorry)
If you know me, and I assume most of the people reading this blog know me at this point, you know of my serious aversion to the friendship and society destroying bookface. I canceled my personal account years ago, mainly because of my stupidity, but also due to my introversion. Ultimately I decided to sign up for a bookface account to have another outlet and hopefully grow my viewership for this site.
Then it seems every time I tried to post to my blog I’d get a message about Facebook being disconnected. I’d then log into BF and would be locked out for security reasons. WTF? It’d then ask me to post a selfie of myself, which I would do. Jumping through hoops…for what? I still stand that they did not have a picture of me to compare it against, so what is the useless point of that exercise? I will never know. But ultimately that method would get me back in for a short period. And all would be well, until this week.
frustrating, yes. Recoverable, yes…until now : (
I tried making my Monday post via my blog, and again got the message that BF was disconnected. Fart poop doody*, OK, I’ll go and post a picture of myself again, for whatever reason. Nope, not this time. My account was straight up deactivated.
Holy WTF? Why?
I have no idea why I was kicked out of the walled garden that is BF. I tried appealing the deactivation, but have yet to receive a response from BF.
But the least they could have done for me is tell me why they disabled my account. Frustrating is the feeling I got most often when I used BF. No rational behind their walled garden turns frustration into further loathing.
I suppose I’ll have to have my blog without Facebook integration. I lose. Nothing to see here. Move along.
And this concludes my first month of this new blog!
*Thanks Boss Baby for that statement.
Before I even published the post complaining of my FB deactivation, I’m back in, apparently. How this craziness works, I’ll never be sure. They never notified me except the banner when I tried to log in, and never notified me about the reactivation. Again, walled garden if you get the reference. But for now, I’ll celebrate my blog almost fully working as long as this post makes it to BF. Time to think about design changes for this site.
I am nearing the end of the first month of the new TK. Its going OK, I’ve been mostly concerned with the back-end stuff on this site so far. I’m not totally thrilled with the default site design, but with three kids I just don’t have time for a site redesign. Maybe the future will bring a redesign to my site?
The worst part of this site so far is the facebook integration, or lack there of. Every two days or so facebook wants me to upload a picture of myself to prove it is me. If they don’t have an original photo of me to compare against, what is the point? Causing me endless frustration? Aren’t most of the accounts on there fake anyway? If this post is late, it’s the fault of facebook.
It’s every couple of days I get locked out, and it’s really frustrating.
The best part – aside from the general sharing of my life and MS – is spreading the news that in 2018 there are treatments to slow down progression of MS and therefore hope. I’m not sure if it’s me, or the reaction of doom when I mention I suffer from MS, but it really seems to be that when you tell people you have MS there is a certain pity that takes over the conversation. People see you as doomed. And that is exactly what I’m trying to tell people. It isn’t like that anymore. Or at least I hope to expel that myth. People certainly are free to take the slowly withering away course if they choose, but not me. I am going to fight it with every last bit of strength I have in my body. I will go down swinging. My skull is thick like that .
Ocrevus was the most recent medication brought up to me when the great Dr. K last talked about finding a Tysabri alternative. Once again, Tysabri is working absolutely great for me, and I’m in no hurry to switch off it. But given all the safety issues, It’d be remiss to not even consider an alternative. The great Dr. K hasn’t yet given me the efficacy rate of Ocrevus (or I forgot), probably as it’s so new, however he did mention that it is proving very effective for those who take it. Something to consider, but I have that old school ‘if it ain’t broke, don’t fix it’ attitude (unless it’s involving technology).
Ok, so what is Ocrevus? It is a humanized anti-CD20 monoclonal antibody. Yeah, what? Again? I don’t make this stuff up. I’m not that familiar with it, but here is what I take. Ocrevus binds to immune B cells via the CD20 receptor and kills them. Wait? That can’t be good? Except when your own immune system is attacking your CNS, it’s probably a very good thing. And it is proably why I saw all those mentions of being immunosuppresed for a bit while starting it.
As for frequency, that is where this drug seems to shine. You only need to receive Ocrevus twice-a-year. Every six months sounds rather nice. I’ve mentioned before, many times actually, my needle anxiety and this would make for four less infusions per year. Better than the six infusions per year, which isn’t a problem for me – anymore at least. The post-infusion danger zone seems to be longer on Ocrevus (24 hours observation) versus Tysabri (one hour observation). On Tysabri, they have me sit in the ambulatory infusion center room for an additional hour to insure I have no reaction (should happen for everyone on Tysabri, unless your nuero says you don’t have to be observed). With Ocrevus, I imagine they send you home on self-watch for reaction symptoms after a bit of observation. Though, I am not yet sure if they keep you for a period after infusion.
Ocrevus does carry the same brain destroying risk as Tysabri: PML. Since it also has a PML risk, I will stay on the miracle MS drug Tysabri for as long as possible. It is working great for me, I barely realize I have MS because of it. But if I ever need to switch to another medication, it will probably be Ocrevus. At this point in time anyway.
No, I’m not talking about that realization that what is important to you is what really matters. So what is one positive thing about having MS? You can make $50 (US$, I assume) if you submit some of your blood to the DxTerity study and answer some questions. It is just a finger prick, not drawing blood from a vein with a needle. You do the small blood draw at home and return it to the study in a prepaid mailer. And the blood sample goes to a study that looks at your genomics. Other than that you’ll have to read the story.
Go here to enroll: https://www.empowerstudyms.com
What is the empower study?
Evaluating Multiple Sclerosis Patients ShOWing A GEnomic Signature of Therapy Response
Now why am I sharing this with my fellow MSers? I do not receive any compensation from posting this information. Yes, there is financial benefit to you from participating in the study, but I do get anything for referring you there, excepting any research findings that benefit MSers. The links above are clean. They do not have referrer information. Go for it, get a little extra cash for yourself, and – what I believe to be the most important part – further research into MS. For more information visit the study’s FAQ page.
And now I get to give credit to where I found this study. I was checking out other MS bloggers and when I visited Cathy Chester’s An Empowered Spirt and found this information. A big thanks to Cathy. I actually found it on many MS blogs after visiting her site, but Cathy’s was the first blog on which I found the study information. Now on to lurking other MS bloggers. People with MS like to blog, apparently?
Tecifdera is kind of special to me. Not that I’m on it. I almost switched from Tysabri to Tecfidera under the great Dr. K’s suggestion. He cited that there was no reported PML cases (at the time) as the reason for wanting me to switch. Boy, I am seriously glad I did not make that switch.
Dr. K said, if you recall from earlier posts, Tysabri is seen to have ~80% effectiveness at reducing exacerbations (100% in my case). Whereas Tecfidera has only ~50% effectiveness at stopping flare-ups. Plus Tysabri is, I assume, engineered in a lab in a far away land. While you can see train cars going by filled with Dimethyl Fumerate. Yet they charge almost as much as Tysabri for it. Probably because of drug testing/safety and whatnot, but it just doesn’t seem right how much they charge for MS medications when they roll by en mass on a train…but that’s another post.
So yeah, the big point that was turning me on to Tecfidera is that it’s a pill. No needles…sign me up! Except for that lost efficacy. And it turns out that there is PML risk with Tecfidera too…perhaps from earlier drug interaction? I’m not exactly sure. Not to mention the other side effects Tecfidera can cause. I am just glad I did not make that switch. Seriously glad, as greater effectiveness plus once-every-two-months dosing isn’t that bad…even I could deal with the needles that infrequently. And I mean it, Tysabri is working like a charm for me. So I stuck with what I know, and I am very happy with that decision…thus far.
And it isn’t the last alternative I’ve been offered, which of course I’ll try to get to in the next post.
AKA Tysabri. My MS drug of choice. And it is kicking butt and taking names!
Tysabri may be one of the most effective medications in fighting MS. But it does have a rather hefty side effect possibility. I’ll get into that later.
What is Tysabri. It’s a monoclonal antibody against the cell adhesion molecule α4-integrin. Yeah, I’m with you…WHAT? Simply put, it stops the transmission of immune cells through the blood-brain barrier. And that is all I can really say about this miracle drug, except that whatever it is doing seems to be working outstandingly for me. The great Dr. K said that it has about 80% effectiveness at stopping relapses, but in my experience it’s 100% effective (and I say this with my fingers crossed). Aside from the fact that it is used for Crohns patients and is being explored as a cancer treatment. There might be some use to that as chemotherapy used for MS patients experiencing a exacerbation. But as always, I digress.
Tysabri is effective as can be, this much is true. I haven’t had an attack/exacerbation/flare-up since I’ve stared. My wife AND the great Dr. K both said they have not noticed any disease activity on my MRs. YES! The lack of side effects is nice, especially when I got switched to once-every-two-months dosing, which allows a bit of immune cells though the BBB to fight any JCVirus that may have slipped through to prevent any occurrence of PML. The post infusion lethargy doesn’t happen anymore since the switch to the longer dosing schedule. And that is the only side-effect I’ve noticed while taking Tysabri. A world better than the at least one-day-a-week of feeling like you’re fighting the flu while on Avonex, or the once-weekly stick of a needle. Plus Tysabri is way more effective!
But there is a dark side to Tysabri. I’ve mentioned it before, and it is scary as can be. The side effect, PML basically destroys your brain. It erases you from the inside. I’ve mentioned this before also, but is worth repeating. PML is what killed a lot of AIDS patients in the 1980s and (at least the early) 1990s. Yes, it is a very scary prospect for me. Something I contemplate a lot. A whole lot. But with the effectiveness of this medication, plus the great Dr. K. telling me that PML risk seems to decrease the longer one is on Tysabri, it is a risk versus reward situation. I’m dong well, keep me on it, right?
Well, that’s where the other part of the dark side of Tysabri comes in. I possibly would’ve reconsidered it if I knew about this first. Dr. K only mentioned this when he talked about switching to Tecfidera. I never switched, and I’m happy with that decision. It is when a person stops using Tysabri they experience what is called a rebound relapse. A bad relaspe from what I take from Dr. K. Effectively, a Tysabri holiday or break (or just giving up on it) will allow your immune cells to cross your BBB…with a serious vengeance. And the resulting flare-up will likely kick you up a bit on the EDSS. But ultimately, I took the PML risk to stop the progression of MS. And that it has done.
Tysabri is super effective, and I wouldn’t want to stop it given the choice. With the rebound relapse issue, for now, I am stuck on Tysabri. Not the worst of situations, at least at this point.
So yes, I did not know the dark sides of Tysabri when I first started it. It was a crazy time and I wasn’t thinking as clearly as I should have (can you blame me?) None-the-less, Tysabri has been one helluva DMT and I’m glad I got on it when I did. It put the brakes on my MS progression and has allowed me to live a life almost as if I didn’t have MS, aside from the once-every-two-months infusion. The six times a year I am reminded that I suffer from a serious neurological disorder.
As I mentioned previously, in the 1990’s medications became available to slow down the progression of multiple sclerosis. These were the interferons: Avonex (β-1α), Betaseron(β-1β), and Copaxone (Glatiramer acetate). The ABCs heralded an option to proactively treat multiple sclerosis, from what I’ve learned. However, what did people do before the advent of the ABCs? As I also mentioned in an earlier post, it was rather archaic.
When a person with MS experienced an attack/episode/relapse their neurologist would prescribe one of two things: a steroid or a chemotherapy. I had a steroid during one of my two major attacks I’ve experienced. The steroid was a trip through hell, and I’m not even paying attention to the mood swings. It was solu-medrol. This isn’t your typical prednisone people, it is methylprednisolone. The name looks pretty much the same but they are way way different in their effect. It wasn’t a simple pill to take (I got those during the first attack), it was supposed to be an intravenous administration over five days with a single dose per day. As I mentioned I absolutely loathe needles, and when my neurologist gave me the option to drink the solu-medrol,I took it. After I manged to put down the first smoothie/solu-medrol, I decided to never do that again once the course was finished. Honestly, I think it’d be easier to drink gasoline even though I’ve never tried that. Seriously, heed my advice: do not take the option to ingest solu-medrol. Honestly, that second attack was a doozy, and I’m glad I had something to help get me right again. The diplopia (double vision) I experienced was a horrible and prevented me from doing everyday simple tasks like ride a bicycle or drive. I am so glad it’s in the past now, and I recovered pretty well – my vision returned to normal. I did end up with some numb spots on my body though. Even with the numbness, it was a day of celebration when I realized the diplopia was gone!
As for chemotherapy, I’ve never had to be put on it. Which is a good thing. Having previously used chemo to treat MS increases your chance of developing PML while on Tysabri. Aside, chemo just has an awful sound to it, plus the hair falling out thing. Luckily, I likely won’t have to face that decision now. Chemo seems so to be an overwhelmingly chaotic and archaic way of treating MS, I wouldn’t even want to contemplate having to take it. It is basically poison they pump into your veins.
So I am thankful there have been a few different treatments that have come out recently. Avonex and Tysabri have saved me from further progression, but there are others. Here is a full listing of medications from the NMSS that are now available to treat MS.