Specialty Pharmacy Called

And let me know they have my ocrevus.

Grand. Can I get it shipped to the hospital of my choice post haste?

No, they had to verify my insurance information before they could release it.

I should hear back from them on Thursday, if not Friday.

O M G W T F B B Q ? ! ? ! ? ! ?

This stuff better be worth it. Without the JCV/PML risk.

I’m passed the three month washout mark already, and I’ve been feeling rather stricken with MS as of late. Just send me what I need!

Today Marks

Three months without Tysabri.

I miss it.

Today is the day that I could go on Ocrevus. If the process was complete. Which it isn’t.

Reality Check

I had to visit the vampires today. They’re checking to see if I have hepatitis. I sure as hell better not!

But I understand the reason for the hep check. For the new medication to which I am switching. And it’s always nice to be sure. Though I’m 99.9% sure I don’t have hepatitis.

Back to the subject. Went to get my blood checked. Took it, that was fantastic. Or as good as a blood draw can be. NCH Lake Zurich treatment center was the bomb, figuratively. In and out fairly quickly. Went after the morning rush, before the lunch rush. Like I said, “fantastic as can be.”

I had to, unfortunately, call the nuero’s office to let them know I had my labs done. OMFG. What a hassle it must be for these people to answer calls from patient’s of the doctors for who they work. Sass and attitude is all I got from the person who answered my call until I asked, “Wow, bad day, huh?”

If you can’t be a decent person on the phone, you don’t deserve to be answering that phone.

Guh

I really need an MS drug, soon. It has been too long without one. I’m only about a week away, if I’m not mistaken. I am really missing my Tysabri at this point, but I know where that path leads (on 8 week dosing) and am hoping for Ocrevus to step in and fill that gap! Hopefully next week or the week after. ASAP though!

I Feel Washed Out

I really hope I get the call from Dr. K.’s office soon about the Ocrevus switch. Like really, really soon. I’ve felt the Tysabri withdraw for far too long. I’m sick of it and I’m passed it. And I want to get on Ocrevus ASAP. I am still not sure about ocrevus. It’s probably the same way I felt about Tysabri when I was switching to it, yet I fear the results weren’t as optimal. Of course, what I really hope is that it’ll be a steady disease stopping drug, unlike Tysabri where you’d feel really good after the infusion, but I’d be jonesin’ for it the last two weeks (8 week schedule). Did I feel that when it was every 4 weeks? No! But do I want PML? HELL NO! C’mon Ocrevus.

Somewhat Reassuring

I’ve been kind of regretting the decision to switch off Tysabri. I mean, yes, I did have a slightly noticeable Attack/Episode/Relapse* that was confirmed by a MR (it’s the main image on this site) that means the 8 week dosing of Tysabri was allowing too much immune cells through the blood brain barrier. And the great Dr. K has been trying to get me off Tysabri for a while. When the pills started coming out, Dr. K tried to get me to switch. I considered it, but I decided to stick with the highly effective Tysabri. And glad I am, as the pills (eg tecfidera) just doesn’t show the same efficacy as Tysabri.

So I’m obviously nervous about switching. I hope Ocrevus works as well or better than the Tysabri. And here is s an article that says, “Ocrevus outshines all other DMTs.”

Wow, that’s awesome! However, I have yet to confirm that Ocrevus is more effective than Tysabri. Sure, it may be safer*, but is it as effective. The great Dr. K. said it SEEMS to be as effective or nearly effective as Tysabri, but with less ups and downs. That’s good. I mean I do enjoy the Tysabri boost that comes a couple days after infusion, but it comes with an equal low on the 8 week dosing schedule. That also is a huge reason I decided to switch.

So yeah, as I’ve mentioned before, I’ve made the decision to switch. Now it’s just a matter of making it to my Ocrevus infusion in a couple of weeks. Hopefully after 07 February.

*As no cases of PML have been found on Tysabri users that first washed out for three months before beginning Ocrevus. However there have been some PML cases in those that switched from Tysabri to Ocrevus immediately. I’m happy to make sure I don’t get PML, even if it does mean an extra month of the suck. As I always say, I sure as hell don’t want to become a PML case.

New Year, New Regimen

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.

Goodbye 2018

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.

I was pretty sure

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.