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.
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.
Baclofen Pump Refill
November 10, 2008
I have had my baclofen pump for about three months now. It has made a huge difference in the quality of my life, in the quality of my family’s life. The other day was refill day. This is the first time I had to have it refilled. Someone recently asked me, if I had my refilled yet. When I said no, they replied, “Oh, just wait. That’s an experience. Just wait.” Oh, great, I thought. That doesn’t sound fun.
But then I realized, it can’t be as bad as the surgery, or living with severe spasticity. I thought maybe like most things people embellish for who knows what reasons. Still, it did make me a bit apprehensive.
So, I arrived bright and early for my appointment. I awoke at 5:30am so I could shower, have coffee, eat breakfast, get my family out the door to work and school, so I could leave on time for the hour and a half drive to my docs. I really hate early morning drives. It sets off vertigo whenI don’t have enough time to adjust to being awake. I don’t like driving in the early morning.
Well, it is a procedure for sure to get the pump refilled. Not a bad procedure, just a procedure, especially the first time. Seems there’s a first time for everything. The doc needs to find the tip of the pump so they can line up the template. The template finds the center of the pump which holds a small area in which a needle is inserted to first draw out the remaining meds then fill the pump with the new meds. Sounds easy enough. But, finding the tip the first time can be tricky.
The doc needed to really press and feel all round the pump. This is not a gentle operation as the doc needs to feel below the skin into the fat layer to find the outline of the pump. Seems the tip of my pump is up under the ribs. Things got much easier when I told the doc how everytime I bend down I get a sharp shot to my ribcage. So, she proceeded to feel under the ribs for the tip. You can imagine how much fun that must have been.
So once the tip is found and center marked. My mid-section is draped with a sanity cloth(has a hold in the middle for access to the pump) and the skin all around the pump is painted with the heavy thick yellow sanitizer. Pretty simple so far.
The doc got the needle and meds ready. Then told me I’d feel a pinch. I’m thinking like getting your blood drawn-a slight pinch. Well, the doc never said ‘slight’, I added that. It was quite a pinch. Just a point I am ready to say, “Hey, that’s beginning to hurt maybe something’s wrong,” it stopped. The needle found the pump reservoir. A few moments later and I was being cleaned up. All done. Simple as that.
It was sore for a few days. I guess it was to be expected considering there was a fair bit of manipulation around the pump. All in all a pretty simple, easy procedure. I thought I would share this because when I spoke with others I got negative feedback about the experience. And I am not sure why. Granted it is a bit more than having blood drawn, but only a bit more. Easy and simple.
A long time diagnosing
October 24, 2008
As many of you know, it took about 18 months before I was diagnosed with multiple sclerosis. I and most of my family thought this was a long time. After living with this disease for the past three years I realized that initial 18 months is not really that long considering the type of ms, and most notably the fact that I am a woman. Whoa there, I am not being a militant feminist.
I have two other sisters with ms. For two of us it took about 18 months or so for a working diagnosis of atypical, chronic progressive ms. The other sister was diagnosed in about six months ( her MRI was lit up more than the Christmas tree at Rockefeller Center). I have spoken with many ms patients-both men and women-and by far I noticed that on the whole men were diagnosed quicker than most women.
Recently, I had a conversation with an ms specialist regarding the length of time it took for me to get a diagnoses. The doc mentioned that more often it takes twice the time or longer for women to be diagnosed with ms (seems perhaps the dirty little ms secret). Yes, the doc had some ideas as to why this is the case.
First off, the symptoms of ms are usually vague. We all know them: fatigue, weakening of muscle strength, balance/coordination issues, cognitive, and memory issues (not feeling quite as sharp mentally and/or forgetting things more often). Because of the vagueness of the symptoms most docs don’t take women seriously or push the symptoms off as having to do with monthly cycles, hormonal stuff.
Now I know there are a lot of women who have been diagnosed properly and in a reasonable amount of time. But the truth is there are a lot of women who are not. Yes, I and others have come across Dr. Headupmybutt, Dr. Moron, Dr. Iwanteasycases, and Dr. Itsallaboutmoney. Also the diagnosing criteria, McDonald Criteria, calls for very specific findings in order to put a typical ms diagnosis on a person.
As far as I know, there is nothing typical about multiple sclerosis. All the literature I read states quite plainly that multiple sclerosis reacts differently with everyone. OK. So, we have a disease that broadly follows some norms, but even within that broad spectrum of norms nothing is typical or the same. For instance there are four types of ms (as we know it right now). These are broad categories in which docs try fit their patients. But even with in these categoreis (RRMS, SPMS, PRMS and PPMS) there are huge variations and differences. Not everyone with RRMS experiences the same symptoms, the same relapses, the same reactions to the disease modifying drugs (dmd). Not everyone with RRMS has the same amount of white spots, in the same pattern. I won’t go on, but you get the idea.
So we have a set of criteria to diagnose a widely varied disease of which there is no one definitive test and no cure. Even the effectiveness of the dmds are unknown. Let me clarify that: the dmds are known to be effective but how effective is uncertain.
I can understand why some patients who do not fit into the McDonald Criteria for diagnosing MS wait for a long time. I see the connection. What I don’t understand are medical professionals who know that there will be many people who fall outside the McDonald Criteria and yet they won’t help those people. These docs act like diagnosing MS is an exact science, with absolute tests and a certain pattern of symptoms that always develops.
I always had trouble with docs telling me they could absolutely guarantee I did not have ms. Really!??!! How can you guarantee an unknown? By the same token I am leery of any doc telling me they absolutely guarantee I HAVE ms. I mean if any test does emerge as being 100% positive for MS, then we’ll all know for sure. Even RRMS patients need that test administered to them. So, I guess it could be a long time before any of us are diagnosed with certainty that we have MS.
Atypical Multiple Sclerosis 