Yeah, 2018 wasn’t great. It wasn’t horrible though. I didn’t decline rapidly or anything. No, it’s more like a slow gradual descent. Which is why I’m making the decision to switch to Ocrevus. I’ve stated before how wonderful Tysabri has worked for me. Up until I switched to the every-two-months dosing schedule and how the last two weeks are a horrible existence. After doing research and seeing how people are doing on Ocrevus, and my JCV titre, it’s a no brainer. The only real issue is the washout period. I believe it will end on the 10th of February. My next Tysabri infusion was supposed to be on the 10th of January, but I’ll be canceling that on the second of January. Right after I make the decision known to my neurologist, the great Dr. K.
So here is to a wonderful 2019! And hopefully a medicine that completely puts the brakes on this horrible disease.
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.
My wife dropped off my recent scans with the great Dr. K, to verify that the lesion I’ve pointed out is indeed a new lesion – indicating disease activity : (
She also picked up my physican’s certification form. I should have it mailed off in a couple days (after I get the passport photo), and it’ll be about a month until I am legal. Woohoo.
That lesion I thought was new, well it was confirmed as a new lesion. I thought I was feeling some symptoms, and it turns out I was likely that which I felt. What a drag. How depressing. Just when you think you’re going to make it a decade without a relapse. Just when you think you’re in the clear.
No joy. Still stuck in that is the Tysabri working for me on the extended schedule? Maybe. I’ve got to get him old scans to compare to the new scans, drop them off at his office so that he can compare them. And we’ll go from there.
Once he determines if it’s a new lesion that was pointed out, we’ll decide whether or not to continue the Tysabri at a shorter dosing intervals (e.g. every 6 as opposed to 8 weeks), or should I switch to Ocrevus.
As I’ve stated before I’m not too keen on switching off Tysabri, as it has worked so well for me. However, my PML status kinda puts a kink in that drug.
So If needed, I will switch off, but only if it can’t be avoided.
I’m pretty much stuck on tysabri as coming off it can induce what is known as a rebound relapse. Supposed to be pretty rough. I’d rather avoid it if I can.
So where am I now. More waiting and seeing.
An aside, when my wife was talking to me about the doctor’s report, she mentioned that the doctor reported my lesions were innumerable. Basically too many to count. My brain is swiss cheese, yo. Not good. Then she mentioned a patient who had a couple of lesions that is stuck in the fetal position. Wow, that sucks. big time. I guess the lesions are just missing their target or my brain has a lot of redundancy. Or something else, the brain is certainly mysterious.
Now I’m off to research ocrevus more. And I’ll try to complete the green card application. And crack my knee.