Rituxan For Multiple Sclerosis
December 6, 2013
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.
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.
Atypical Multiple Sclerosis 