80th Tysabri Infusion – What Happens When We Go Beyond the Studies?

Tomorrow afternoon, I will have my 80th infusion of Tysabri, a drug taken by infusion every 28 days to slow the progression of my MS.  For the past 2 years, I’ve been beyond the time period for which there is published data from any peer reviewed studies.  Heck, I just saw data released for likelihood of getting PML in your 6th year on Tysabri released in July.  This isn’t the most useful information as I go for infusion number 80, but I figure I will hear more about the 7th year in July next year.

Going through the garage today, J found some emails back and forth with my neurologist from back in my first year after being diagnosed.  Sometimes, it’s useful to see where I was to understand how much better I am now.  I was emailing about my massive headaches, coordination problems, neck sensitivity keeping me from wearing tee-shirts, and swallowing problems.  So with my following flare only two months away putting me in the hospital, this was actually a pretty close look at my life prior to MS.  I was dropping oatmeal in the cafeteria, unable to run, gagging with tee-shirts and any dry food, and miserable with headaches.  It was not my finest year.

Now, I am working full time, running, going to the gym, writing by choice, and generally in a much better spot.  I attribute much of this to Tysabri, and reading back how I felt before makes the odds of PML less concerning.  PML is one of the biggest risks when taking Tysabri as it leads to more disability or death.  Only people who have been exposed to the JC virus (60 percent of people in the U.S. have been) are at risk for PML.  I am in the 60 percent.  Still, when I started Tysabri, my wife and I agreed, “Give us 5 good years over 30 crappy ones.”  Eighty infusions into this treatment, I’ll re-sign the same agreement. 

This isn’t to say there has been no progression.  I am slower than I once was, and it feels like more than just age.  My ability to multi-task has taken a beating too, but all I have to do is look back to see a glimpse of what could have been.

Speaking of what could have been and may still be, I recently ran across mention of a study about cognitive decline in MS patients over 30 years.  http://multiple-sclerosis-research.blogspot.com/2013/08/cognitive-decline-over-30-years.html

As I read through it, all I could think about was interns syndrome where psychology and medical school students become convinced they have every symptom they read about.  I think I have some of the symptoms in terms of executive functioning and processing speed, but hopefully I still fall in the normal range.  The study does argue for treating MS aggressively to halt progression.  To date, Tysabri is still the gold standard for aggressive treatment of MS.

On the cool tangent side, we have a spot by our door where two rose bushes grow incredibly fast.  For years, I have told anyone who comments on them to feel free to cut any bloom they want because its replacement will arrive in a few days.  The bushes grow so fast we are always having to cut them back to clear a way to our front door.  We don’t fertilize them or anything like that, but we have thought of removing them.  We just can’t get rid of something which blooms nicely with no work on our part.

Last Halloween, O threw some pumpkin seeds from his the carving of Jack-o-lantern down off the front porch.  We thought nothing of it.  How many kids have spit seeds from various fruits?  I’ve never seen anything come of it until this pumpkin plant.  We’ve cut it back once already this summer, but the ground around the rose bushes most have some sort of magic.  I think Charlie Brown will be coming to our pumpkin patch next.  Maybe it just goes to show, one should be careful where one plants their seed (a lesson our son will need in a few years)….here’s what the plant looks like now:

Of course, I find the pumpkin plant to be the second most interesting plant in our yard right now.  At the beginning of this post, I had a picture I took looking up at a tree in our back yard.  I want to know why one of the patches of leaves is so bright red in amongst so many other branches of green leaves?  Magic?  Ours is a strange house some days.