Category Archives: Tysabri

"Statistics are like a bikini. What they reveal is suggestive, but what they conceal is vital"

Richard Wilkenson cost of inequality:


Kathryn Edin, a professor of public policy and management at Harvard’s Kennedy School, said in a phone interview and in a series of emails that a major problem with all three attempts to measure poverty ‘is that the poverty level has no real empirical basis — it is not a good measure of how much it takes to survive nor is it a relative measure meant to reflect what is required for social inclusion in the society. The poverty level is most certainly too low. Most people can’t actually live on incomes that hover around the poverty threshold.'”

The second quote was from Aaron Levenstein saying, “Statistics are like a bikini. What they reveal is suggestive, but what they conceal is vital.”
Speaking of suggestive statistics and studies, on Patientslikeme.com, I ran across a reference to a study suggesting antidepressants may be useful in warding off or curing PML, a major risk of taking Tysabri as I have been for the past 6 years.  http://www.jns-journal.com/article

  
Given that Tysabri remains very popular for many making the same calculations my wife and I have on the value of continuing usage despite the risks, it would seem dealing with any signs of depression should be deemed very important.  According to one meta study done a couple decades ago, between 25 and 50% of MS patients become clinically depressed.  Granted, in the past 20 years treatments have come a long way, but everything I read suggests depression is still quite common.  

I guess I now have one more way to guilt trip those who give me a hard time, or at least those who wouldn’t recognize true clinical depression as opposed to situational sadness.  “You’re going to kill me! Don’t you know depression makes me more likely to get PML and die?”  I shouldn’t joke, but… 
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In family notes, we have been battling to get K out of hospital and keep her out as she battles a stomache virus for the past 5 days.  I’ve never seen so much come out of someone so small.  Sometimes one has to smile even in the face of gross:


 I have no idea why this post has such a funky presentation as it was written in word and copied over the same as the past 100 posts. 
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1 hour 58 min.

1 hour 58 minutes
It was a building block to remember my old sense of self-confidence.
That’s how long it took me to run my first half marathon.  That’s a pace of just over 9 minutes per mile, and the best part was I never felt tired.  I had planned to stop at every water station and walk, but I never felt the need.  In truth I took some joy listening to the lady behind me chuckle as I followed my usual practice of taking two cups of water at every stop and promptly pouring over over my head.   I guess some people don’t do this in 34 degree weather, but it felt good.
The best part was the sense of being able to do a physically demanding activity, and do it well.  I know these races are against only myself in reality, but…it was also against the self loathing and the sense of helplessness.  Does anyone wonder why sports can play such a role in a participant’s life?  For me it’s because for a long time they were a source of self.  I was an athlete, one who was fit enough, smart enough, and coordinated enough to be good at any sport with a little practice.  For one morning, I was able to feel that sense of self esteem which comes from participating in a sporting event.  Running in the race was a way stop the devaluing in my head of what I can accomplish.  It’s interesting because the run isn’t one of my life’s greatest accomplishments, but sports in general are what gave me the confidence to deal with everything in order to live the life to which I aspire.  At least for now, the day after the race, the runner’s high lingers, and the attitude adjustment/reinforcement is probably as valuable as the 45lbs. lost in training.
One of my favorite parts of the run was all of the signs and people cheering.  For any who have ever considered going to an event like a marathon with a sign, please do.  If you feel particularly kind, put some humor on your sign.  My three favorite signs were:
“Your training for this event probably lasted longer than Kim Kardashian’s marriage.” – Mile 6 or 7
“You go random stranger.  You got this.” Mile 2
“Smile if you peed yourself even a little while running this race.”  Mile 11
(continue for MS notes and family notes)

On the MS side:
It appears NIH is investigating a test to look at t-cell responses.  The quote from the paper of interest to me was
“The potential of such screening of JCV-specific T cell responses to identify a small number of individuals at risk for the development of PML could be complementary to stratification strategies based on antibody levels that are currently being tested to identify approximately 50% of treated individuals who are at increased risk [2], [39] . Second, the unique IL-10 response to JCV in two PML cases and the increased levels of IL-10 in the CSF of subjects with PML suggests that IL-10 or the IL-10 receptor may be potential therapeutic targets in natalizumab-associated PML [26] . Finally, the poor magnitude or quality of the memory T cell response to JCV in subjects with PML suggests that a vaccine which boosts JCV-specific T cells that produce IFNγ, TNF and IL-2 could play a role in the prevention of natalizumab-associated PML.”
It is important to note this was a small study and as such is subject to all kinds of measurement errors.  My question after reading the paper is how difficult/costly is it to test for the T cell responses for JCV proteins since it looks like the predictive value of the tests lay in a single outcome of heightened IL-10 production?  From a graphical standpoint, Figure A and B tell pretty starkly different stories.
On the home front, my favorite moment came Sunday night as O grew ever more hyper.  I was ale to focus him on cooking with the simple appeal, “O, please come over here.   I need you to hit this with the meat hammer.”  Once he had pounded the chicken, it was easy to get buy-in for helping prepare the rest of dinner giving him some choices about what we were going to put in it and how we were going to present it.  He now has a dinner’s worth of cooking experience, and it was good enough for all of us to get seconds, twice the rarity considering the amount of vegetables in it.
O’s Chicken recipe:
Step 1: pound flat ¾ pound of chicken breast.
Step 2: place in glass baking dish, cover with BBQ sauce, flip and cover other side.
Step 3: cover with tin foil and place in over at 400 degrees for 5 min.
Step 4: Remove foil.  Cover chicken with cheese (we used Swiss).  Recover with tin foil.
Step 5: Make broccoli and spaghetti. (Breaking the spaghetti was a highlight of the middle steps, but draining ranked high too).
Step 6: Take out chicken when done (for our oven 15 min.)
Step 7: When all three parts are done, a parent can cut the chicken up, and all three were stirred together in a large bowl. 
Step 8: Call everyone to the table and eat!
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