MS, MS cognitive function, MS symptoms, pumpkin, red leaf branch, roses, Tysabri

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. 

Share
cracked cup, decision process, Hijab, Iran, MS progression, Multiple Sclerosis, Tysabri, Vitamin D

Cracked But Still Holding Water

4 Comments


It seems we always ask whether the glass is half-full or half-empty, but maybe we should start by asking some questions about the glass itself.  Is it possible the three-quarters empty glass is a miracle?  Seeing it as such might require a willingness to see it as how it is right now while ignoring the leaking cracks in the glass or the angle at which the cup is held.  Both could be strong indications the glass will not remain full for all that long, and the view of one quarter full could be quite Pollyannaish.  
Here is my hard part as I try to gain perspective.  Almost all the new research indicates my MS should be worse.  I have been more or less stable symptom wise for some time now.  Tysabri has worked well.  If my mind is a glass then MS is the event that cracked it.  It appears cracked, but thus far still holding water with a minimum of leakage.  I guess I should happy my glass is not upside down.
Still recent research shows all kinds of medium to long-term impacts of MS.  It appears grey matter damage in MS patients may affect decision-making abilities and more specifically our ability to assess risk.  (http://multiple-sclerosis-research.blogspot.com/2013/08/cognitive-impairment-in-ms-affects-risk.html) I know I have somewhat questioned my ability to make decisions on the fly of late, but I take some comfort in my decisions to stay on Tysabri.  It was a decision whose logic remains the same as when I started the treatment.  
Next week, I will go for my 80th infusion.  There is no credible research on taking the drug for as long as I have, but the best guess for my risk of getting PML remain, between 1 in 300 and 1 in 400.  My neurologist and I agree looking at the charts that the risks seem to level off in year 4.  Now for how long these risks remain level is unknown.  Still, the logic was “Give me five good years over 30 crappy ones.  If year 6 is bad, we will deal with it then.”  The logic still applies, and the risks remain steady.  It may be foolish to rely on risks for making life and death decisions, but if one believes in the research above,  what better way is there than to use the decision making process from a time before some of the grey matter loss?  
Until shown otherwise, I will continue to believe the glass remains solid enough for use even if the cracks are sometimes unsightly.
On the crazy correlation versus causation understanding front, I have seen a study on Iran’s MS rates spiking almost seven fold from 1989 to 2005.  (http://www.smithsonianmag.com/science-nature/Is-the-Hijab-Responsible-for-Irans-Spike-in-MS-Cases-204115701.html)  It is worth noting, this article does say they are not telling women there to abandon the Hijab.  They are merely telling women there to take vitamin D supplements.    Granted it appears women there have low levels of vitamin D on average, and it draws the link between the wearing of the Hijab and low levels of vitamin D.  I can follow the logic.  What I have not seen is a link between getting MS and low levels of vitamin D.
(Continue to the next page for more)

Certainly low levels of vitamin D increase symptoms in patients.  I certainly feel it when I stop taking my vitamin D pills, but I doubt lack of sunlight lead to my getting MS.  I played soccer for 20 years with multiple outdoor seasons every year.  I played outside daily growing up.  In college, I kayaked, hiked and played soccer.  I worked as a landscaper in the summers.  If anything, I maxed out my body’s ability to absorb vitamin D.  
Therefore, I come back to does wearing a Hijab lowering vitamin D levels cause MS or simply bring its symptoms to the forefront.  The most common symptom of MS is fatigue.  Vitamin D helps energize most of the people I know who take it whether they have MS or not.  Could not taking vitamin D alleviate MS’s most common symptom keeping doctors from looking for MS?
I know the increase in accuracy and availability of MRI machines has dramatically increased the ability to diagnose MS, but who looks for MS in non-symptomatic people (outside of researchers looking for a control population)?  How much of the spike is due to diagnostic improvements versus real increases in number of patients with MS.  I just wonder if lower levels of vitamin D are bringing to the surface what is going on in the brain regardless.  Is the damage occurring before the symptoms manifest?  Most people I know with MS talk of their first symptoms as a separate event from the flare that lead to a diagnosis.
I do not know if vitamin D is a shield against all MS activity, but I will still keep using it.  I know I have MS. That means most of what I take in terms of drugs outside of Tysabri is symptom management.  I am just wary of saying taking vitamin D is what has kept the glass from leaking.
Thank you

and 
Share

Our Family's Stories of Growing Up

%d bloggers like this: