Sunday, September 3, 2006

Shaking My Head At The Things I Read...

     Since tomorrow is Labor Day, it is only fitting I should have to report to "labor" at 8:00AM!  So, given the fact I will most likely be too pooped to party when I return home in the evening, I decided to post another entry tonight...just pretend it's tomorrow or something. LOL

     I receive daily news posts via a website that does query searches on just about any topic ( www.Topix.net ) and of course my query is on Multiple Sclerosis.  Topix.net randomly searches national news (and some international) and sends me an email whenever they get a "hit" on MS.  The most recent articles I have been reading are about the promise of Rituxan/Rituximab and MS.

     As many of you know, I participated in a MS/Rituxan Study this past year...that is, until they "exited" me because I was scheduled to start Tysabri.  The study was/is a Phase II double-blinded study...what this means is I was given two infusions of "something" last November, but I'm not privy to know if I got the drug or not.

     Given the extent of "new" symptoms I developed post infusions, I'm pretty certain I got the drug...also the minor infusion reaction I had during the first IV was a pretty telltale sign I got my (or the company's) money's worth.  But I won't know "fer shur" for probably another year or so, and only then if I follow up and ASK.  Yes, I was a human guinea pig!

     Back to the articles I've been reading...Genetech and Biogen Idec have released what they are calling "promising" Phase II results of 104 MSers in a Phase II study.  The companies are claiming "the drug showed a statistically significant reduction in the number of lesions compared with a placebo at 24 weeks."  I have no idea if I am considered one of those 104.

     OK...I'm fixin' to have an "I'm Just Sayin'" moment here.  I read these articles and I can only shake my head.  Since I'm pretty certain I got the drug and my Multiple Sclerosis WORSENED, I'm highly doubtful there are any of my personal statistics included in this report!  I developed more brain lesions POST Rituxan than I did in the 3 years prior to the study...this is a documented fact and not a made up statistic.

     Now, I certainly don't want to burst anyone's bubble here and trashing Rituxan is not my goal either.  But what I know to be true for ME AND ONLY ME does not match what is being reported...and, this isn't the first time.

     Living with a chronic and debilitating disease, in itself, causes great speculation.  I'm not special or different when I say, "I wish there was a drug to cure MS".  We ALL do...we ALL want something that will make our lives and our health a little easier and a bit better...we want to believe in these pills and infusions...we want to believe someone somewhere is altruistically searching for "the cure".

     I've said it before and I'll repeat myself now...Health Care in the United States is a business...a big, fat, money making business.  Altruism cast aside, the bottom line dollar is what spurs the research onward, not you or I begging or pleading for a "cure" (but I DO hope my begging influences SOMETHING as I doubt I'll stop).

     As high-paying consumers of Health Care, persons with Multiple Sclerosis should always keep a discerning eye on what we are being told about our health and our drugs.  After all, we're big consumers.  I read multiple blogs and message boards with various twists and turns regarding this drug or that treatment...I read about MSers ARGUING between each other which drug works better for what symptom, trashing each other's beliefs or values.  It's truly amazing...it feels as if just because we HAVE the disease, "we" are the sole expert about it and its treatment.

     So here's my "I'm Just Sayin"...

     My MS is mine and yours is yours.  I can offer you my experience with the disease or a drug, but that is the extent of my knowledge...because MY MS is specific to me and YOUR MS is specific to you.  I can only tell you what I know about me, but I have no idea how something might work for you.

     I can only say, if I DID get Rituxan, it had no impact on my MS at all.  That doesn't mean it might not work for you.  But I DO hope you will ask multiple questions and demand reasonable answers for yourself WHATEVER course of treatment you decide to take IF you choose to take anything at all!

     The thing that makes us most vulnerable (those of us with MS or any kind of chronic disorder) is our lack of knowledge or understanding about the disease.  I study DAILY about MS, either in the news, in chats, or consulting with my own body...and there's STILL so much I don't know.  I assume this "study" may be why you read this blog (because I have no earthly idea why anyone WOULD read it otherwise! LOL) and I hope I have a few helpful things to say now and then.  But study wisely...don't believe everything you hear and certainly don't believe everything you read will be true for you...even if it's in this blog or others.

     **Stepping off the soap box now***

I'm just sayin'.....

2 comments:

hagartyjj said...

Well said!  I think sometimes people forget that when we mention our experiences in our blogs that they are just that, OUR experiences, and that we all have different experiences even if at times they are similar.  

It was interesting to hear of your time with Rituxan as I have been reading a lot about this drug.  I am at a point where there doesn't seem to be a lot of options for me (have taken Copaxone & Avonex without sucess and am not a candidate for Tysabri because I have had cancer...so I have been told, although my neuro is looking into it).  I have read this medication is also used to treat B cell NHL which is one of the cancers I had...so it may be something to look further into.  Currently I am not on anything.  I appreciate hearing how you responded, but as you said...we won't know if something will work for us unless we try.  

It sure would be nice if a cure happened during our life, but then again that is something each MS'er views differently too (based on their MS).  I guess nothing with this illness can be easy, can it?  :)

I hope you are having a great Labor Day (don't work too hard).  Take care of yourself.  

Jaime  

sonyasuzanne said...

Well said my dear, well said!

And what do you mean by "(because I have no earthly idea why anyone WOULD read it otherwise! LOL)", what, are you kidding me?  Your blog is great, your sense of humor is great, and I love reading what you have to say.

Okay, so I'm just sayin.....

Love and hugs,

ME in cold, windy, rainy Chicago