JCV seropositivity

Yeah, I am JCV+.

My titer level is right in the danger zone: 3.2 or 3.6.

Egads, that’s bad! I certainly don’t want PML!

But I certainly don’t want to waste away from MS. The tysabri treatment is what stops my MS progression, HARD!

That’s my dilemma: to treat with risk, or find another likely-less-effective and hopefully less risky alternative treatment, or stop treatment altogether. (though I’d like to think I’m not a moron).

I like the Tysabri, it’s way better than getting stuck in the leg every week with those arcane ABCs (in my case it was Avonex). Works like a champ, and doesn’t leave me with side effects, it’s the perfect MS drug thus far that I’ve found. If it ain’t broke, don’t fix it right?

Here is more information on PML and Tysabri.


From the linked video:

Natalizumab (Tysabri) is especially risky. “We know that the risk with natalizumab is incredibly high in the context of JC [John Cunningham] virus antibody positivity and prolonged therapy,” Dr. Berger said in an interview after his presentation.

Still, “you can safely give natalizumab for a short period of time when treating patients with aggressive MS,” he said. “I will frequently employ that strategy even in the context of JC virus antibody positivity.”


I’ve been on Tysabri since 2009. Almost 10 years . I think that’s a bit longer than a short period.

It’s like living with an invisible gun stuck against your head. Never knowing IF or WHEN it will go off!

Saw My Nuerologist’s

Office yesterday. I did not visit with the great Dr. K. No, I was instead visiting this time with his assistant…I believe her to actually be a nurse practitioner but I could be waaaay off, so I’ll stick with assistant. A number two, if you will. I flip-flop between then, so next time it’ll be the great Dr. K.

It was the typical

Dx: Keeping up with the cycling?

Me: Not nearly as much as I’d like. Two year old at home.

Dx: Anything new with the MS come up?

Mj: Nope

Dx: Your JCV levels are….oh…right the 3.mid range. Let me check with the Dr. on this one.

<Ms. Jackson Leaves for a moment, then comes back>

Dx: A JCV test is not necessary.

Dx: You’ll need a MR prior to your upcoming appointment in Decemberish

Mj: Sounds good

Dx: You will not need gad.

Mj: Even Better

Dx: How are the medications?

Mj: Good, but I double up on the baclofen sometimes at night when my leg is really bothering me.

Dx: Do we need to increase the dosage?

Mj: Probably not, shortly after the infusion I’ll decrease to one baclofen a day. Then I’ll go a few weeks without one. Then I’ll start feeling the tightness again, so I’ll gradually increase to the three per day. Sometimes, especially around two weeks before infusion, I’ll double up at the end of the day which would make it four a day

Dx: Well, it seems like it’s working for ya. Anything else I should know?

Mj: Just that the tightness in my leg seems to have gotten worse. I feel tight all the way up to my back now.

Dx: Keep up the stretching. And Try to exercise.

Mj: Sounds good

Dx: Anything else?

Mj: I don’t believe so

Dx: Ok, good to see ya. If anything comes up, let us know.

Mj: Thank you

 

That is my recollection of the appointment anyway. Could’ve been completely different. MS brain and all. Next appointment is scheduled at 9am in December.

I know its been a few weeks

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.

Couldn't have gone better
Infusion level: Simple

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.

My Eldest Daughter

Is going to MS youth camp this summer. I’m not exactly sure she even understands what is MS, and I’m not going to force it on her until she asks for more information. But none-the-less, we had an orientation day at the Adler planetarium yesterday. It was fun, and I haven’t been out there in many many years. It is also making me nervous to send my firstborn away for an entire week. I’m sure I’ll persevere, as I always do.

Hope

Let me talk about hope.  A term that is tossed around a lot when MS is brought up.
It kind of feels like a distraction, to be completely honest. I understand the end result is the same. A world free of MS, or whatever is said about the hope to bring an end to MS.
This is where I begin my rant about capitalism and start sounding a little bit conspiracy theorist. So if you’re not inclined, move along please. This is my personal opinion, and if you don’t like it tough.
Last I checked (which was a while ago – it could have increased significantly), my Tysabri infusion bills my insurance company around $12,000 every time I get 300mils of natilizumab infused into my veins. Granted, due to the PML risk my infusions got moved to every two months, so it works out to ~$6,000 per month to treat my Multiple Sclerosis. That is more than I (or my family as a whole) make in a month.
Now I ask a question. With such a cash cow, do you really think these huge drug companies are looking for a one time cure (no recurring income for the drug companies) or are they just going to keep putting out more and more expensive treatments to keep you going so that they can keep draining you financially (guaranteed income for the drug companies)? You can guess what I think about a cure coming from a major drug maker.
Per usual  it is up to the little guy, the mad scientists, to come up with a cure to MS. Too bad all that time and effort is being wasted on treatments. But I am happy to have them. Tysabri really seems to have worked well for me. As always, if you ignore the PML risk.

Oh Yeah

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.

Another needle in my vien

And i feel like i so needed it. Like I have mention I have been feeling really run down again. Not a fun feeling when you’ve got a family that needs constant attention. I’m not sure how long it’ll take to feel more energy in my life. Could be a day or a week. Only time will tell.

 

Only two more days

Until i receive my next dose of natilizumab. Again this last period of time before infusion leaves me jonesing for my next dose. I’ve been lethargic for the last week. No energy, hence missing last weeks post. The MS drain can be killer. Fortunately I don’t seem to need it as terribly bad as last time. Although I feel like I didn’t have  my typical recovery from the last infusiom. Hopefully this next one will take care of the lethargy. I’m getting tired from fighting..this tired. I’ll let you know this weekend, should I remember.

MS run down

Man, it’s been a rough week. I’m not sure if it’s the kids are amped up from being in the house all winter or all the stuff that has been going on, but I am so worn down this week. I am so low on energy at his point. Every day it seems.
Is it MS or is it the kids? The proverbial MS question that is always asked by me. It’s probably easier to blame MS, but I an’t be sure what is the true answer.- unless I were to have an attack. And I do not want that!
Good thing we’ve gotten a new bed. It is helping a little bit, but we’re in the period of adjustment with the new mattress soo that’s a bit of a kink in the equation. My back has been hurty, while it realigns to the new mattress #FIRSTWORLDPROBLEMS!
Most of all I need to sleep for like 48 hours so that I can recharge my batteries*. I cold also use to ditch my kids for that period of time as they are a majority of the reason I have lack of sleep.

You down with OPCs?

You know oligodendrocyte progenitor cells. Yeah, I didn’t know that either. They are the CNS cells that will repair myelin. They also are able to transform into neurons and astrocytes. Effectively, the linked article says they are  supposedly the ‘cure’ to MS and it lies within our own bodies. As long as we can influence them properly. OPCs are pretty capable according to this Wikipedia article.
 
Again, it is a matter of getting them to do what we want. Studies in those poor mice* are showing promising results. That’s a good thing. But at this stage, it’s looking very early in the research. So It’s probably ten fifteen years off – if it works safely – before this treatment gets used in the public. That’s what my experience tells me anyway when it comes to new treatments for MS or most other diseases. I know about fast tracking but after jumping on board with Tysabri so quickly and basically being stuck on it with no exit strategy, I’m definitely taking the more cautious approach with drugs from here on out. And I’m not knocking Tysabri, it’s great and I’ve not experienced an attack (knowingly) in almost the last decade. I’d say that’s a pretty glorious drug. And I needed to get on something very effective on the quick at the time, as the Avonex wasn’t stopping progression as much as my doctor wanted.
 
*I’ll probably come back as a lab rat in my next life, if you’re into the whole reincarnation thing.