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.

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.

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.

MR Day

Today is the one time per year I have to get an MR(I). Yeah. At least there is no needle. Dr. ordered it without contrast. I’ve mentioned before I loathe needles.

Although in this case I might’ve actually needed contrast. With those issues I had a little while back I’m nervous I had new disease activity. But alas, I’m mostly managing my disease myself (with the guidance of a ms-specializing neurologist, of course) and it is going so well. I’m very nervous that I may have had new activity thought. I will know tonight – unofficially, at least. Best of luck…to myself.

My nerves are really on edge already. The prospect of further disease activity is wracking.  I count so heavily on the Tysabri stopping my MS. I certainly hope it is continuing to work so well and those issues on my right side were nothing but past disease activity resurfacing, although I’ve never had any issues with my right side….The pressure is what is going to get me before the MS even has a chance to take me out.

Bring On The Bac

Baclofen, that is.

I posted on Friday how I was feeling pretty good this Tysabri cycle.

That is until this weekend.

My leg – errr- calf is super tight and totally bothering me.

Sigh. It’s getting old. With absolutely no relief in sight, or even available to me. Except for manual muscle release – A BIG NO THANK YOU – at this point at least.

So it is waiting until Thursday for my Tysabri relief. It is hard to even think straight with the calf as spastic as it is,.

But, lets focus on the positive: My right hand numbness has mostly resolved. I’ll be getting my yearly MR soon and that’ll show what’s up with that. Hopefully nothing.

And back to the negative: I can’t get the knee right above to crack, which provides temporary relief from the calf. I just need it to crack for now!

C’mon Tysabri!

And it’s looking like I’ll be getting my green card in December!!! Finally after two years!

 

< 1 week until infusion

And I’m feeling much better this infusion period. I had to look on the calendar and to my surprise, my infusion is only six short days away. Wow, last cycle was horrible. I was feeling so run down and suffering from my MS symptoms that I just couldn’t wait to be infused with that sweet, sweet Tysabri. As I’ve mentioned so many times, shortly after the infusion I’ll start feeling better, but before I go on…

I need to apologize to the clerical staff at the AIC. I was clearly in need of my tysabri and my temper was very short. I was taking things the wrong way, and I got unnecessarily hostile (for me, no threats of violence occurred, I was just being a typical American on my last infusion – which is VERY BAD IN MY BOOK). For that I need to apologize. So I am. I am very sorry for the poor introduction I provided when I walked in during my infusion. I will do my best to keep my hostility to myself. And in all honesty, unless the MS takes a dive in the next six days, I believe you’ll get the normal cheery in public (even if, as per usual, I’m burning on the inside) Mike. I feel terrible for the hostility I provided during the last interaction, and I’ll be apologizing in person in six days.

So now that is out of the e-way, I can get back to the more pressing issue of how I can feel so different after each infusion. I believe it may be the ‘freshness’ of the Tysabri, or the person behind the scenes who is mixing (? reconstituting) the Tysabri.  Or something. Some infusions I’ll feel wonderful if not for the entire time, most of the post infusion time.

But last time, it didn’t feel as good as first. So perhaps it was the infusion before last? Shortly after my infusion I got a numb spot in my lip. Scary, yes, but no need for alarm – or I thought. As it went away I forgot about it. Then a couple weeks later, I got the ***** scared out of me. I thought I was having an attack or something, as my left hand started feeling as thought it was going numb. Seriously, one of my ‘issues’ I have from the MS is the numbness of my left hand (mostly in the fingertips, or at least that’s where i touch to test the numbness). All of my MS issues have been on the left side of my body thus far (right-brain issues). So when I had a problem on the right side of my body, I kind of freaked out. I sent a message to my Neuro via the patient portal. Of course, the doctor was not in, so I had to talk with one of the doctor’s partners or something (someone filling in for him that day, I suppose).  I did hear back from him on Monday, but thankfully the numbness started to ebb. It is mostly gone at this point, for which I am thankful.  Ill find out more when I get my MR and see him in December.

I’ve also been sitting on the doc’s recommendation to get a green card for a year-and-a-half, so I’m going to contact a dispensary and see if they can help with the application process. I always stall out on the application part.