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.
Oh the drugs they have come out with for MS has been glorious recently. Before the 1990s all there was for treating MS were steroids and chemotherapies. How archaic! Lets start with the first Disease Modifying Therapies (DMTs): The ABCs, and the first one, the A for Avonex, is what I used in the past so I’ll describe that one specifically. B for betaseron. C for Copaxone.
The ABCs are interferons. Inteferons are signaling proteins that are released when a pathogen is introduced to the body so that other cells will increase their anti-pathogen resistance. Effectively, it’s a messenger that tells to the body to spring into action. In MS, the inteferons are put into the body to hopefully combat the progression of MS in some mysterious way. All I really know about Avonex is that its harvested from mice ovaries in China. Then I belive it is reconstituted with human DNA and shipped to your door to treat your MS. A gross oversimplification, yes, but it effectively conveys my knowledge of Avonex.
The route of administration is not a fun one if you do not like needles/injections. With the ABCs you’ll actually receive a kit for sticking yourself every so often to administer the medication. I however, am not able to stick myself with a needle. I just can not bring myself to do it, self-preservation I suppose. I’ve tried and tried sitting there with the needle, deciding where to stick it, and ultimately deciding that nope, I can not do this. Luckily my wife, the MR tech, has experience with sticking people, so she was able to stick me and relieve me from that duty. For which I am forever thankful.
Now, you’ve had the drug administered. You feel fine after the injection. Then you get up the next day feeling like you have the flu. That is the interferon doing it’s thing. And a pleasant experience it is not. Dr. K would suggest that I take 800mg of ibuprofen before the shot and then continue through the flu-like symptoms. Didn’t help much, plus I’d occasionally make the mistake of forgetting I took the ibuprofen and double up on the dose making it a 1.6g dose of ibuprofen. I think that overdosing ibuprofen actually messed me up or caused an allergy as I get a hard and painful lump between my upper lip and nose (I believe it’s called the philtrum). To this day I will not take ibuprofen. I even made the mistake of telling an ER doctor that I’m allergic to ibuprofen when she tried prescribing it. I automatically got turfed as drug seeking, I could see it in the doctor’s eyes. What I should have said is I suspect a ibuprofen allergy as I get a lump in my philtrum every time I take it. Live and learn. But I digress…
Here is the advice the great Dr. K gave me for administering Avonex:
- Drink LOTS of water – something I still do to this very day – a good thing
- Ice the injection site for 30 minutes prior to injection
- Premedicate with ibuprofen to lessen the side effects. Keep it up through the duration of side-effects.
Also, there is a plus side to the ABCs. They will prevent you from getting colds or at least reduce the symptoms. I remember when I was taking Avonex and everybody else in the house would be down with a severe cold, I’d be continuing life as normal. You have to see the good and bad!
Now back to the current time. I did not achieve the desired results with the ABCs, so I was pulled off Avonex, given an eight week drug holiday, and was switched to my next drug Tysabri.
This time, it is all about me. Or more specifically how my MS is doing (or not doing, based on your view). And I know this isn’t the fist Friday in this month, but I’m just getting this site restarted, and ideas come at random times.
Since my medication, Tysabri (generic name: natalizumab), is working so very well, I’ll probably post updates on my well-being with MS only once-a-month. That is unless I were to experience an episode/exacerbation/attack. But once again, unlikely due to this overwhelmingly dangerous yet tremendously effective medication. Don’t worry, I’ll go into Tysabri sometime in the near future.
Actually, let me back up some. Shortly after diagnoses around late summer 2007. I went to visit my then new neurologist, the great Dr. K, and he put me on an Interferon (Avonex to be precise), which is a once-a-week intramuscular injection. Yes, a once-a-week needle stick that can leave you with ‘flu-like symptoms’. To be completely honest, it sucked. I absolutely loathe needles, probably from my burn when I was around two years old. And MS is not a good disease to have when you hate needles. Especially when you’re getting stuck every week, but I digress.
Unfortunately, after a follow-up MR the great Dr. K wasn’t impressed by the results I was getting on Avonex, so he switched me to Tysabri. Tysabri had just been put back on market after being pulled due to Progressive Multifocal Leukoencephalopathy (PML from now on). PML is bad and you do not want it. It’s what killed a lot of AIDS patients in the 1980’s and 90’s My neurologist explained my odds at about 1:100-1:150 with my current JC virus titre level. He also explained to me that the longer you are on Tysabri the smaller the chance of developing PML, and he actually switched me from once every 30 days to once every 60 days dosing which he said allows some of the Tysabri to ‘wash out’ of your brain which should lessen the chance of developing PML. And I’m all for that.
So ultimately how am I doing? Great, given the circumstances. I’m lucky that my diagnosis came when it did, as the great Dr. K. does not put people on Tysabri any longer. And yes, I do have some MS issues, but they are relatively minor. The biggest being the spastic calf I have. It is always cramped up to some degree, for which the great Dr. K prescribed the a low-dose pill form of the drug Baclofen . It helps when it’s really spastic, but the nice part is shortly after my Tysabri infusions I typically can go without it for a while. I don’t have PML (that I know, at least) so I’m happy about that. I’m happy to be under the care of great MS specializing neurologist. I’m happy that MS didn’t wipe me out before it was discovered. I’m happy about the fact that my wife discovered my MS by putting me on a test scan for a new MR machine at her hospital. My life could have been extremely different if I had not found out. And knowing is ALWAYS better.
And with that, I will close with this thought I have gleaned from MS. MS may take your abilities away from you, but it also bestows upon you a better understanding of those things that are truly important in this life and allows me to ignore the things that do not matter. This is the true gift that MS has given me.
I’ve decided that a good early post on this blog would be describing exactly what is multiple sclerosis. But before I really dig in, I will say that MS is different for everybody and your disease course may not follow the prescribed path.
So what is MS? I could take you to this wikipedia link, but that’d be too easy for all of us. I’ll just give you the most direct way of putting it generically. MS is a demyelinating disease. This means that your myelin sheath (think of it as nerve insulation) in your brain and spinal cord is effectively stripped away by your own immune system. And this is why MS can have such varying degrees of incapacitation. Think of it as an electrical problem in a car. One little wire being shorted out can cause a minor irritation like a warning on your dashboard or it could cause the car to stall out completely. Like I may have mentioned in an earlier post, one little lesion can pretty much disable you, or a whole slew of lesions may not have that big of an effect on you. Everyone is different
This is also why MS in non-communicable. You absolutely can not pass MS to another person. It is an autoimmune disease.
As always I’ll include that the best way to battle MS is to get under the care of a MS-specialiizing neurologist and get on effective MS medication as soon as possibly feasibly. What I’ve learned is the earlier you catch MS and get on an effective MS medication, the better chance you have to prevent such damaging lesions and progressing into a worse form of MS.
Put the brakes on MS now my fellow sufferers! It may seem dire when you’re fist diagnosed, but with treatment and perseverance, you can likely hold out against MS.