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.

Finally Infused

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.

And I hate needles

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.

[email protected]

 

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!

the view from my infusion room, Schaumburg in the distance

 

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.

 

Guh

I should be post infusion right now. Instead I have another 24 hours of suffering (actually around 14 hours at this point in the evening).

Damn cancer patients. The plight of getting infused at an Ambulatory Infusion Center.

EBV, D3, Smoking and Sex

I have have at least 3/4 of those…and MS. Damn it. I probably have Epstien-Barr too, but I can not verify that at this time.

If only I had known in my 20’s that I shouldn’t smoke…oh wait, I did. Stupid me for not listening to myself, society, and science. So stupid on my part. I did give it up though.

Perhaps if I didn’t spend so much time in my basement playing video games I’d have gotten enough D3 (sunlight) to ward off the multiple sclerosis.

And being a dude should’ve helped,. but it didn’t. Just like me to buck the trend. Something I’ve been doing my entire life.

 

And there in lies the problem with MS. One of the many actually. You’ll spend so much time thinking how/why did I get this, what did I do to deserve this? Well, in my case at least, it won’t help to contemplate those things. I have MS. There is no going back to a time when I didn’t have MS (or at least know it). It is impossible as time travel, so I do not think pondering how or why it has happend will be of any benefit. Especially since there is no definitive answer at this time.

Of which I can be sure is that I do have a diagnosed case of Multiple Sclerosis. There is only one thing to do now.

Look forward.

That means a few simple things:

1.) Taking care of myeself

2.) Take my MS medication as prescribed.

3.) Exercise and stretch.

4.) Try to maintain a + attitude.

Don’t bother looking back, it only leads you to a what-if scenario that won’t be at all beneficial to the current scenario.

Wednesday

Wednesday is so close

I need my dose so badly

The  fatigue is here

This haiku is brought to you by a Multiple Sclerosis sufferer in need of his Tysabri administration. Me.

7 day warning

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.