I am currently sitting in the infusion center as the needle in my arm slowly dispenses Rituxan. I relish this day; looking forward to it like a child anticipating her birthday. After all, its a gift that keeps giving for six months. So, I guess the child would be looking forward to her half-birthday.

Today is the second dose of the cycle. I faired okay after the first. Mainly, I felt tired and fluish for about a 7-10 days. It’s a small price to pay for stability and consistancy in a disease whose M.O. is instability and inconsistancy. It’s also a MUCH preferred medication to Cytoxan-for me. Two doses to a cycle, one cycle every six months.

Knowing that each disease modifying drug (dmd) change means one less option, I hope to get many years out of Rituxan. Each dmd also means a risk-will the new one be as effective as the last?, what are the new side-effects? how long will this one last? All good questions. All questions of which, given my druthers, I would rather not have to know the answers. But, some I know the answers to and others no one knows the answers.

For me, focusing on the present moment is the only way do deal with atypical chronic multiple sclerosis. Thats not to say I don’t plan for my future-I do. I try to focus on the now so as to enjoy my life, my family, my friends. When living with atypical chronic multiple sclerosis it is imperative to focus on the present moment-it’s all I got.

The biggest risk inherent with Rituxan, from my perspective, is the possibility of PML (Progressive multifocal leukoencephalopathy.) Yes…the same PML associated with Tysabri. A few things to consider with Rituxan:

  • Are you JC virus positive? If so, it leaves the door open for the possibility of PML.
  • If JC positive-it becomes somewhat murky-not muddy-just murky. Essentially, the question is: it worth the slim risk of PML for a comfortable quality of life for an uncertain amount of time?
  • What are the other options? When I asked my doc this question there was a pause followed by two meds neither of which were very good options and I subsequently erased them from my memory.

I was told that so far, no patient taking Rituxan for MS have been diagnosed with PML. So, thats good news. My doc has been using it for 5-6 years-a good amount of time for me to feel
comfortable with it.

Yes…wonderful…but, does it work? So far so good. I am completing my second cycle. Quite frankly, I couldn’t wait for me veins to soak up the med. I was beginning to feel a small
slide backwards. Apparantly, it can take several cycles before your body has the necessary maintenance levels of Rituxan. I will see in six months I guess.

Well, the nurses have disconnected me and I will head home to reap the rewards of my day.

MS Improves With Rituxan

September 13, 2013

Almost four months have passed since completing my first cycle of Rituxan. Admittedly, I was apprehensive about trying a new treatment option. My doctors started treatment using the least problematic option, so every change means potentially more worries and less future choices. After all, progressive multiple sclerosis is the giant white elephant in the room- ain’t nobody looking it’s way. Every other week it seems relapsing remitting ms has a new treatment option while progressive ms plods along with bad to worse treatments. Oh, I guess I should just be happy there are treatments. And I am!

So, onto the treatment du jour-Rituxan. Yes, its doing its job. Overall, my symptoms have lessened, I’ve grown stronger, and I remain stable. That’s a good thing. I cannot say that each day or week I continue to see improvement, but my life is noticeably better. I can walk further distance wise, and have more stamina, endurance. If you have read any of my blog concerning my early days of with this disease, then only remaining stable would be a huge deal. But to feel stronger, to have symptoms lessen, to have improved quality of life is truly a blessing.

Now onto the good part. Yes, I said the good part as if improved quality of life isn’t good enough. Recently, I learned that it can take several cycles of Rituxan before garnering it’s delicious full effect. Needless to say I welcome my next cycle of Rituxan. The lack of side effects is also a welcome change from cytoxan and cellcept. Granted the possibility of PML if JC Virus positive is a bit bigger of an issue than say nausea, but PML has not occurred in any MS patient receiving Rituxan as a disease modifying treatment. We all need a good justification every day-that’s mine.

No, this is not a re-hash of my last post. I completed my first Rituxan treatment. When used as a treatment for Multiple Sclerosis, one Rituxan treatment is given as two 4-5 hour infusions separated by two weeks. There is a six month period between treatments. I am happy to have one full treatment completed, and happily await my second treatment in six months.

As an update, I did have a few side effects after the first treatment-I think. Several days after my first infusion, I felt tired, fatigued, headache. I felt, almost…almost like I was getting a cold or flu. It never developed, but for a few days I felt a bit run down.

Now onto my second infusion. It was more of the same. First the nurses gave me tylenol and benedryl in pill form. Next, I was given a decadron (steroid) drip. Then onto the main event, Rituxan. YIPEE! Midway through the infusion I felt a bit of a headache, nothing earth-shattering, a lingering pressure headache. This lasted about an hour or so then it faded away. I went home feeling good, tired from the infusion, but feeling good.

How did you feel afterwards? Were there any lingering side-effects? Do you feel any improvement? All good questions, all the questions I wondered as well while driving home. Actually, you need a driver. Because you may feel dizzy, tired, etc. after the Rituxan infusion, you cannot drive yourself home. Ok, onto the good stuff.

There weren’t any lingering side-effects this time. I waited for them, planned ahead just in case, but they never came. That makes me happy. As with any new adventure, the beauty lies in the unknown.

According to the docs, some people only hold steady, walk the plateau, with Rituxan. Some feel their symptoms improve. For a few Rituxan doesn’t work. For me, I noticed improvement after the second treatment. Coordination, spasticity, weakness, and dizziness all improved. That equates to a whole bunch of fun for me. And that makes me even happier!

Rituxan

May 9, 2013

Living with progressive Multiple Sclerosis means your treatment options are limited. And not very appealing. After going through a year of Cytoxan treatments, and a baclofen pump implant I found myself on a plateau for several years. That is a good thing.

But, plateaus tend to be followed by hills and valleys. I find myself at that point, where the plateau begins to change its landscape. Well, it’s been three years in the making. Almost five years ago, really four and a half years ago I completed my course of Cytoxan. After two years, I began to slip again. I call it slipping because that best describes how my disease works. Symptoms slide from this to that, no plummeting occurs. It’s in those moments of slippage your fate is sealed. Unlike relapsing-remitting, there is NO remitting. I cannot think, well ok I am like this today, but maybe tomorrow I will feel better. When my symptoms get worse, they stay worse.

How do you stop slippage? That is a dance best choreographed by my neurologist. A steroid treatment here, a boost of symptom meds there, followed by the grand finale of a complete medicine change. The idea is to keep you dancing as long as they can. I do mean that quite literally. But life is a long haul, and with a limited amount of treatments each one a bit scarier than the last, the dance becomes a ballet and not a waltz.

What drug of choice is next? Wait…..wait….wait for it. There it is-Rituxan. Quite brilliant really. Yet like a genius, brilliance has its own dark side. Rituxan is an incredible drug. It basically destroys your B-cells. Yes, those same B-cells that help you fight infection, disease, etc. Yet it doesn’t destroy every B-cell, after all, you need some to keep from getting sick at the drop of a hat. So, it destroys the every B-cell between grandmother and grand child. By reducing the B-cells your body won’t fight and destroy itself. See, quite brilliant. I think I may know a few families that would like to disown itself of everyone between grandparent and grandchild. No! Only kidding.

But you do see the brilliance. Being able to target cells like that is awe-inspiring. Although, I can’t help but think what is next in genetic biopharmaceutical warfare…oops…I mean medicine.

Now to the nitty gritty-has it helped? Don’t know. Had only one treatment. The series of treatment goes like this:
1. First Treatment – 4-6 hour infusion
2. Wait two weeks
3. Repeat
Then every six months repeat steps 1-3.

Is it better than Cytoxan?
Considering the order of treatment my docs take, least severe to most severe, I’d say no. Immediate side effects: Much better
Overall effectiveness: Not enough data for me to answer.

The side effect issue is HUGE. I had the infusion, felt little to no effects and the next day nothing. No nausea, bone chillin pain, not much of anything. So far I am happy. If it works for a period of time I will be ecstatic.

Good and Bad

February 2, 2011

So I have been feeling pretty good lately.  I’m not running any races, well I’m not running.  I have enough daily energy to do what needs to get done.  Essentially, I operate on a low level.  That  is good.  I am happy with that.  I can make a little life for myself.

The bad. Well, I’ve never been satisfied with slowing down or following rules.  Most of the time this rebellious spirit serves me well.  But, when it comes to conserving my energy and keeping my energy at a good level the rebel in me is not serving me well.

Rebellious Spirit, Spirit of the Soul, does help with overcoming the depression, the “woe is me” feeling that a chronic illness brings. The spirit enables you to live happily, find a way to make your life, see the joy in life despite or maybe even because of your troubles.

When this disease, when atypical ms progresses again I will be facing another round of chemo, cytoxan.  If you have read any this blog you know that I have a love hate relationship with cytoxan.  Chemo really helped me, but I was sick; sick through the process.  I want to keep myself as good, as healthy as I can.

The rebel me needs to ssllooww down if that is going to happen.  In analyzing why I don’t slow down, I’ve come up the answer.  I think.  I want to live life, experience all life has to offer.  I don’t want to follow the speed limit and park between the lines when I die.  I want drive 100 mph taking the backroads finally careening into a skid as I stop at the Pearly Gates jumping out of my convertible  tossing St. Peter my keys.  You get the idea.

The spirit is willing but the body isn’t able.  So I hope my spirit finds creative ways to live life without punishing my atypical ms ridden body.

We’ll see how it goes.

The One Thing

January 2, 2011

The secret to success is the one thing.  This isn’t a new idea, but an effective reminder for me. The one thing for me means the one focus.  The one thing I focus on to get me through whether going through steroids, cytoxan, or daily living with MS.

For me, the one thing is my son.  I love to be outdoors walking in the woods, shooting hoops, etc. with my son.  I have a routine, a daily routine I perform from the time my eyes open in the morning before I even try to get out of bed.  Ok, so I press the snooze button a few hundred times before I start this routine.  OR, you could say the snooze button is part of my routine.  I hate alarm clocks.

As I shake the sleep from my head, my eyes, my body I repeat to myself “this is my situation, I cannot change that.  I am grateful for my life especially my son.  I picture my son and I walking through the woods with our dog, or shooting hoops, or talking, even laughing.  Remembering my blessings, realizing how much I still have in my life puts into perspective my atypical MS.  This process also frames my thoughts, feelings, and ideas in a positive light making life a bit easier.

When I was going through cytoxan (chemo) I performed this same routine while sitting in the chair in the infusion center.  I imagined the cytoxan as an elixir that repaired the damage done by MS.  I imagined this elixir giving me the ability to “play” with my son again.  To hike a mountain, climb the rocks on the coast of Maine, ride the ocean waves.  Closing my eyes and really imagining cytoxan as an elixir pouring into my veins seeking out damage and repairing it.  I watched it cover my damaged nerve connections and watched as it repaired these connections.

Yes, I know it sounds a bit weird and different.  But, it works.  I believe I responded so well to the cytoxan and baclofen pump because of this attitude.  Somehow this vision made my mind strong so that it was unwavering during the worst times.  Having a strong, focused mind really helps when the hurricane hits.  Because as we all know the hurricane always hits.  No one is left unscathed in this life, that is just life.  You may hear some people complaining about a cold, about a store being out of their favorite ice cream, or not getting a raise in a few years when they are paid handsomely for their effort. As you sit there listening you may say, “Hey, I’ll take your troubles over mine.”  Yet we don’t.  I like to say, “The devil you do know is better than the devil you don’t know.”  Kind of the like “The Grass is always greener….”.  When you are talking about MS, atypical MS, ppms, “devil” is a much better word.

So, I guess I am saying deal with the issues you have because they are yours and find a way to happiness one thing at a time.  I truly think that is the only to deal with troubles.  We all have them, it is how we use those troubles that determine our happiness.

Dancing

September 29, 2010

It is funny that after a few years, okay 5 or more, with MS you get used to the pace of  life. For me life has slowed down, dramatically.  I am on a completely different schedule than I was before; completely different than most ‘healthy people’ I would guess.  Just when I think, hey I am doing alright, life isn’t quite as different as I thought-bang it happens.  You are made acutely aware of just how much MS has impacted your life.

I’ll give you a ‘for instance’.  I feel better, I have more energy, I walk better, I have more endurance, etc.  You know, you’re living it.  I get an invitation to a 40th birthday party, a surprise birthday bash, for a friend who lives in a nearby state, a couple of hour drive. Immediately I think, ‘yes, I will attend.’  Actually, it was more like YIPEE!  I’ll go.  I can’t wait to go out again.  After all the party was at a rented hall with a live band for an all night party.  Just the type of party I lived for before MS.

I knew better than to drive down just in time for the party.  I mean I still have MS,  I need some rest time before the big event.  So, I drove with hubby in the afternoon.  We checked into a nearby hotel and I promptly took a nap.  I wanted to conserve as much energy  as I could.  Right about now, I realized that I wasn’t quite as good as I thought.  A two hour drive for a 40th birthday bash really shouldn’t be an all day event.  Most people would hop in their car two and half hours before the party.  I planned the trip, the drive, the hotel.

Ok, well I just need to plan a bit more now.  No big deal.  Right.  Maybe if I keep writing it and you keep reading it, it will be true.  Life does not work that way.

So evening sets and we head off to the bash–7:30pm.  here is where I am a bit upset.  I figured the birthday boy would be arriving 7:45 or 8pm the latest.  No, no, no.  The person throwing the party told everyone to be there an hour early. And the band was supposed to start playing at 9pm.  I just lost an hour and half.  There is a big difference between me at 7:30pm and me at 9pm.  At 7:30pm I can talk, laugh, maybe even slow dance.  At 9pm I look like I have had a few too many suds and shooters.  Standing around for an hour or so, I began to wonder how everyone else would fair.  I mean could all of these other people stay up so late. No that is not a joke.  I forget that I am not the norm, I am not the poster child for late 30’s and early 40’s people.

Once the yelling of surprise was over and the band began playing I was amazed.  Amazed that most people had energy to dance.  And dance. And dance.  And dance.  They walked around with their drinks, they talked-sometimes having multiple conversations at once, they danced.  At 10:30pm my husband escorted (read: held onto me so I didn’t stumble into a wall or a person) from the party to our car and into our hotel room.

When we left it seemed the party was only beginning to wind up.  Like the best was yet to be.  Wait, let me say that again.  LIKE THE BEST WAS YET TO BE after 10:30pm.  WOW!

Needless to say my head it the pillow and I was asleep.  We drove home the next day. I was silent.  How could I be so accustomed to MS that I thought I was going to be able to not just survive a late night party, but participate.

My life has slowed down.  I am on a different schedule than most people.  But I like it that way.  And that is good because I didn’t choose it and I can’t change it.  Maybe I can’t dance at 9pm but life is more than dancing.