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.
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)
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.
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.
Prior to diagnosis, you aren’t really sure what is multiple sclerosis. In fact, all I knew is you don’t want to have multiple sclerosis.
And you seriously suspect MS at this point. and not having MS is highly unlikely and no longer an option. What to do now? You can’t magically wish MS away. That’s called denial and will bite you years down the road as most of the damage from MS is invisible or happens unknown. You’ve got to start looking at the long game, as MS does not kill, it debilitates. And the added up debilitation is what will kill you. But , let’s not focus on that.
If you seriously suspect you have MS, I’ll share with you what I did*:
0.) Make sure you have insurance coverage before starting this journey. The better the coverage, the cheaper your treatment will be out-of-pocket. I know you don’t want to think about this now, but best to get it in order ASAP. Just to give you a clue: The drug I now take is called Tysabri (natalizumab), and last I knew cost around $12,000/month. Completely infeasible without insurance. But it has put the brakes on my MS, and that – to me at least – is priceless.
1.) Find a good MS-specializing neurologist. The best one you can reach is the best option in this case. If no MS neuro is available, find a general neurologist. They’ll likely be able to refer you to a MS specialist in the area. Or at least help getting a plan of treatment in place.
2.) After seeing a neurologist, you’ll likely be sent for an MR to confirm you MS suspicion. Some people think the MR machine is the worst, but for me the MR is no sweat. It is the needle stick that is the worst IMO. Yes, you’ll probably need to get a bit of gadolinium via injection to enhance active lesions. But you’ll probably be more worried about the scary machine to worry much about that. Bring a caring family member or friend if you want some support pre/post scan.
3.) Probably the most essential thing after diagnosis is to get on a disease modifying therapy (DMT). DMTs aren’t going to fix your MS, they’ll just slow down or stop progression. And putting the brakes on this disease is a very good idea.
Hopefully it’ll turn out to be relapse-remitting MS, the least serious form of MS. If this is the case, you’re with 85% of the population of newly diagnosed MS cases. Roughly 50% of untreated cases of MS will likely turn into secondary-progressive MS. One of the many reasons why an effective DMT is so essentially important. (Source for this paragraph)
Looking for more info on MS?
Wikipedia’s article about Multiple Sclerosis
National Multiple Sclerosis Society’s explanation of what is MS
NMSS is also a great source of information when you’re first diagnosed.
The source link in the last paragraph above also has useful info.
*In my unique case my wife, the MR tech, had already unofficially diagnosed MS, I just had to have a neurologist confirm so I could get on a DMT. I am still under the neurologist’s care.
My source for most of this information is my ten plus years of living with a diagnosis of Multiple Sclerosis