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!


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.