A Sick Man Looks at Life
Voyage in a Dark Place
it's been a while, nearly a year. I had a long period of disillusionment of being adrift without the convenient excuse of a physical MS flare to use as an excuse. But. Here I am again with no promises. Please glance at my opus to catch up on my themes. If nothing else the first 29 blogs outline me, the writer.
MS is a condition I have only after many years begun to see through a clearing fog. It started out as an adventure, a challenge, a shift in focus for a youngish physician feeling himself a cog in a now too-industrial model of healthcare..I was a slave, albiet a well-paid slave.
The condition certainly shook me out of my despairing doldrums. Now, though, I realize I am in many ways a fish caught in a miles-wide net of possible inescapability. The gathering up of all the caught fish, including me, is a long process, years long. But it may very well happen.
As I have said in previous personal evaluations of this MS gig, I do view all of life as a group of bell-shaped curves encompassing each person, thing, animate or inanimate. The curves describe, for each thing or object or animal or me, possible routes with possible outcomes. For this single, caught fish, ultimate escape from the net is small but real.
The End of Tysabri
Natalizumab, trade name Tysabri, is a much-touted MS drug I first began to receive about five years ago. The drug is a monoclonal antibody which manages to incorporate itself into the entry port for lymphocytes moving across the blood-brain barrier; it prevents, or severely limits the transfer of these lymphocytes from the blood stream into the brain. Since these cells are thought to be incorrectly aimed at neural myelin, thinking this necessary substance is Foreign and Must Be Destroyed, their exclusion from my bean-brain stops them from 'chewing my wiring' and leaving behind sclerotic patches caused by a mindless flurry of repair-mad astrocytes, I guess, energized beyond control in the resulting inflammnatory mileau. What a mess.
Tysabri costs about $12,000 per month. When I started it I received it as a monthly injection into a leg, as part of one wing of an on-going experimental study trying to determine the most efficacious route for delivery of the drug.To cut to the chase, it was eventually found that the best way to give the med was intraveneously, IV. I then received the drug IV for over a year without problems.
Now for the fun part. Tysabri, I had known from the start, might cause a patient to develop PML, paroxysmal multifocal leucoencephalopathy Think Kuru or Mad Cow Disease; not exactly correct but it gives you a picture of the dismal future of the Affecteds. I understood the risk was especially bad for those of my MS buddies who had been treated with two of the "ABC MS drugs": Avonex and Beta-seron. I had only received the C Drug, Copaxone. So I was safe. My chance of PML was 1:6000...no, it wasn't. Turns out that the risk is actually Positively Corellated with the level of 'JC virus' in the patient. This is a bug easily picked up by the US population. About half of us have picked it up. I, I found out after receiving Tysabri for over two years, that I had picked it up too.
Levels were drawn, prognostications made and my final result was that my personal chance of developing PML was not the safe-sounding 1:6000 but actually more like 1:115. I declined the opportunity to continue to supply the extreme left tail side of the final study data.
My neurologist strongly suggested I begin Teriflunomide, Aubagio, for continued treatment. After her calming assurances that Mad Cow Disease would not be in my future, I started it.This drug, as I understand it, is a look-alike for a mitochondrial pyrimidine involved in protein synthesis as part of lymphocytic construction. Rather than excluding the built, madcap lymphocytes from my brain as Tysabri did, I would now just slow/stop the building process itself. Like instigating a strike at a ship-building plant.
Aubagio costs $14,000 per month. It has a 60% chance of significantly preventing further sclerotic development.
This, in my mind, is academic. I take 1g Vitamin C po qd bid to slow any ongoing inflammation so as to hinder over-active repair of injured neural sheaths. Following recent studies done in Brazil and the convincing videos sent therefrom, I take 25,000 IU Vitamin D po qd and expect more improvement within 2 years.My creatinine is 0.8 so any talk of hypervitaminosis causing renal failure seems hogwash.Taking the Vit D dose recommended, 600 IU qd, is only enough to prevent rickets. I now wake at dawn and want to get up instead of wanting to go back to sleep.
Afew recent pics
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