My Tysabri Infusion was supposed to be today. But I’m getting off the stuff. Because of the PML risk. It works….really well. At least on the four weeks schedule. The eight weeks seems to be allowing the immune system to pass through a bit. To prevent the risk of erasure by PML. But that also let my killer immune system thought and it caused a minor attack. Bummer, which is why I’m switching. Basically, what I’m taking from it is Ocrevus won’t give me the highs and lows that Tysabri brings, but instead will be a much more level treatment that won’t leave the last two weeks saying, “Oh man, I need my Tysabri!” I should be getting on Ocrevus in early February. And it better work. As well as Tysabri. As I won’t be going back…at least that’s what I took from the great Dr. K.
And I’m officially one month (four weeks) from being washed out today.
That I had an exacerbation/attack/episode back in late october of 2018 (perhaps two of them). However, it is now an official episode while I was on the every-eight-weeks dosing schedule. Guh, MS sucks. Big time. Just when you think everything is going well…
Here is the addendum to my latest MR:
***ADDENDUM***Addendum: There is a new 0.5 cm T2/FLAIR hyperintense lesion
in the pons, just to the left of midline (series 601 image 20, sagittal
series 701 image 29), when compared to 12/8/2017.
So my choices at this point are to move to an every-six-weeks dosing schedule or switch to Ocrevus.
And since my PML titre was right in the danger zone the last time I had it checked…the choice is basically made for me.
Like I said, Tysabri has done wonders for me. Even when there was a big PML risk and no solution going forward for me. The course of action at the time, as Tysabri was working so well was to move to an every-eight-weeks dosing schedule. Too much time, though and it’s letting the problem immune system attack my brain. ON the flipside, however, it should be doing what it is supposed to do and clear my brain of any JCvirus that made it though.
But JCvirus/PML is damn scary and I do no want. So I have made the decision to switch to Ocrevus. Reviews are stellar on youtube and other outlets on the interwebs. Of course, that is no guarantee of no future PML cases reported. There were reports of PML in patients who switched directly from Tysabri to Ocrevus without a washout period. Which is why I’ve gotta do the hella scary washout period. My two month infusion would have been on 10 January. So the three month mark (washout period) will be done on 10 February. This is all a guessing game at this point though.
I’ll find out for sure when I send a message to my doctor announcing my decision on…well I’ll do it Friday as Monday and Tuesday is NYE and new years, respectively. I probably won’t hear back until after the new year.
I received my Tysabri dose yesterday. On a Thursday. Thank goodness, as I was really jonesing for my dose. My body felt like it was starting to give in to the MS. Tysabri keeps that from happening. I need my stuff! And not a day late.
I need to say, though, having my Infusions on a Wednesday at the AIC seems to have made a big difference. In the overall happiness of the AIC staff anyway. Unless they all just got chewed out by upper management, or something, I don’t know. Everybody from reception to one of the best AIC nurses just seemed to be off, or wanting to give me flak, or something. It wasn’t that the experience was terrible. I was able to make it through it all with little trouble. But it seemed like the whole AIC was aimed at making sure my experience wasn’t as good as it could have been. Maybe they’re sick of seeing me after almost ten years? Everybody in this world seems to have a point at which they’ve had enough of me. Maybe they were having an off day. Perhaps I was. It was weird. What felt like a home to me did not feel that way yesterday.
To make it worse, some (likely cancer) patient took my Wednesday appointment again. GDMFSOB!
Anyway, back to the good drug. It was administered. I’m already starting to feel better, but this one could take a few days. I was feeling pretty worn out post-infusion yesterday (hence not posting about it until today). Wasn’t the worst lethargy I’ve experienced (that was the first few infusions), but it was up there. Hopefully that means It’ll work even better? Not likely, but wishful thinking.
And a few people obviously know my Infusion schedule, after just a couple of views everyday for however long, the visitor count jumped to over 30 yesterday. It’s the AIC patient’s fault for taking my preferred appointment time!
And something you never want to see from your infusion pump.
Good thing the pumps realize that instead of pumping your veins full of air! Sorry for the vertical video, but it was an instant and the pump fit better in that perspective. Plus, if I landscaped it, it would’ve shown all my personal info. AND YOU DO NOT WANT THAT ON THESE HERE INTERWEBS!
SIDE NOTE: My research indicates that it’ll take >50ML of air in a line going into your vein to cause a problem. They did note that 20ML of air rapidly infused into an IV line can cause emboli (that’s the term they used). Information I gleaned from someone’s opinion on allnurses.com.
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.