It is Wednesday, one more week until my infusion. The sweet relief that is Tysabri only awaits seven more days. I anxiously await its administration, and moreover, the relief that follows.
That does mean, on the other hand, there is at least one more week of pretty harsh knee pain* and general muscle tightness on the whole left side of my body. It started in my calf and worked its way all the way up my left side over the last decade. I really notice it in my neck during the weeks proceeding my infusion.
But lets not worry about now or even the time leading up to it. Or even the needle stick. Nor the PML risk. Think about the post infusion bliss that follows the dose of Tysabri. It’s worth it! A near normal life with MS.
*My knee feels like it really has to crack, but when I crack my knee it only relieves the pain/ache somewhat.
But the blog spammers have found my new blog and are creating new accounts on my site. I’ve had to disable the ability to register new accounts and delete all the users (except myself, of course).
For linkspam the unscroupulous go after my blog detailing my experience with MS. STAY CLASSY BLOG SPAMMERS. Lamers need a bot to do their work!
This in conjunction with the bookface integration not working and I fear my site will not get any traffic. Then again, when it was integrated with bookface, I don’t think anyone bothered coming here anyway. Still planning on fixing that…when I can.
And I’m awaiting my next Tysabri dose in two weeks! This is the period when I start feeling a sort of withdraw. And it’ll get worse until I am reupped on my Ty. Guess that’s the price you pay when your PML titre level is right in the danger zone.
But I was seriously fighting the tysabri drag. Typical for the week or two before an infusion. But alas, on Wednesday of this week – which also contained a birthday – I received my dose of Tysabri. I did pretty well as we had to celebrate the birthday, but around ten I just ran out of energy and ended up falling asleep. Early for me. But I’m getting ahead of myself.
So I show up to the AIC for my infusion, and informed I am with one of the best sticks. YES! I relaxed a bit inside after doing a happy dance in my head. I hesitate to call her my favorite AIC nurse as she’s a packer’s fan (along with another AIC nurse as I found out), but she is a damn good stick with that needle. I appreciate that way more than her sports allegiances detract. And she knows I’m a Bears fan, so she could take it out on me. But the Packers have been giving it to the Bears lately, so perhaps she doesn’t feel the need? I’m digressing again. I barely felt the needle this time.
After the worst part, the needle stick, it was the typical smooth sailing. Lunch was served almost immediately after my needle stick. Hour infusing followed by an hour observation period. They don’t really watch you for an hour they just come check on you every once in a while and will eventually ask if you’re ready to go home. I rarely am, but I can’t hold the hospital room any longer ; )
So infusion day +1 (yesterday) I wasn’t feeling totally back, and it can take up to a week to feel fully energized. Today I’m feeling pretty good. Might enjoy this nice weather and go for a bike ride tomorrow.
I am starting to feel so much better. I must’ve gotten a good dose of the Ty this time. Honestly, I was on the way up on the drive home after the infusion. Feeling good today. Not perfect. The muscles are still not yet fully relaxed in my neck and calf. My entire body too, but those spots especially. I also feel so full of life in my head, if that makes sense. I feel like I’ve been rejuvinated. Tysabri, you are a beautiful drug! Even if you do have a dark side.
I’ve been wondering a lot as of late if I’d even be aware of that muscle tightness were I not to relief via my infusions. Of if relief were not brought, would I be a miserable person at this point? I surely do hope that I never meet the dark side of Tysabri.
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.
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.
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.