Meeting With My Neurologist
This week I had my zoom call with my neurologist. In general this is a good thing for me, she is very nice, and I trust her knowledge and judgement.
In hindsight, I have some issues that I need to resolve. I don't have a problem with my neurologist, but I have some issues with an overall change to the approach she's taking to scheduling Ocrevus infusions.
She is trying to increase the amount of time between my Ocrevus infusions to greater than six months, potentially much greater that six months. I just realized after the call that I am not exactly sure why she is trying to do this. Looking back the topics of our discussion, I think it's because she believes it will statistically reduce my risk of an adverse infection.
Lowering The Effectiveness of Ocrevus
My first issue is that, as far as I can tell, my risk of infection would only be reduced if we increased the duration between infusions to a long enough duration that the effectiveness of Ocrevus would be reduced.
The drug not working well is something I want to avoid, because I have personally experienced that situation before. I was at high risk for PML when I was on Tysabri. My doctor wanted to increase the time between infusions to reduce the risk. We experimented with different durations between 5 and 8 weeks to reduce risk. I tried 8 weeks one time, and that was way too long. After quite a lot of experiments with different timing and increased accumulating disability I realized that 5 weeks was really the longest I should go between infusions.
I don't want to do that again with Ocrevus. That is an extremely high stress life style that most people will never experience. Your daily quality of life literally goes down in obvious ways. Some MS patients would rather accumulate disability at the risk of safety. Some would rather avoid disability with increased risk. I am in the second category, but in this case, the risk is still not very high.
But there is one difference in my case between Ocrevus and Tysabri, we believe we can roughly see the state of Ocrevus's effectiveness with a simple blood test. However, I am a person who likes to know everything about my drug and right now I personally don't know enough to fully interpret the results of this test. This is my job to learn, and I will, but I just wanted to tell you I'm not comfortable right now. The six month schedule has allowed me to not worry about these things, and this is another drawback to ending that.
I do roughly know how to read the results of the blood test, however, I do not know, nor do I think anyone knows, how to interpret those results as to what exactly my resilience is to an adverse infection. This is where I can start to be a difficult patient, because I understand that doctors have to make judgements. However I am the patient who will always take them to the edge of everyone's scientific knowledge because, unfortunately, with multiple sclerosis that edge is never very far away.
Just to point out, nobody really knows exactly why Ocrevus, Tysabri, or any other drugs work. Everyone just makes general hand-wavy assumptions about stuff and moves on. This is not a criticism, it's just one of the painful facts about multiple sclerosis.
I have a ton of stressful work to do now, and I hate that. It was so nice being in a place for a couple of years of "infuse it and forget it" and now I'm back to being my own amateur doctor and researcher. It's a bummer.
The Second Issue: High Finance
Another great thing about a six month infusion schedule for me is that I get financial aid from Ocrevus exactly when I need it. If I get that first infusion in early January then Ocrevus will pay all of my health insurance co-pay and deductible for the year. That's over $7,000 that I would have to pay otherwise.
If we move that first infusion further into the year, all the time between January 1st and the infusion is a time where I am basically paying full price for any medical treatment. At this point in my life, I can't really afford that.
My doctor partially understands this, but also doesn't fully care. I'm not sure that she should, but this is one of the ways that healthcare in the United States is messed up that most people don't understand. There are so many people that rely on the copay assistance from drug companies and the proper timing of procedures, and I am one of them.
The times at which I know that if I get sick that I'm going to have to pay for it are some of the most stressful times of my life. I'm sad to say I know these times well.
The six month infusion period of my recent life was like a fantasy. Everything was so easy and stress free. But here we go again. Doctor/Researcher/Financier Matt Calkins is back in practice with a client list of one.
#MultipleSclerosis #Ocrevus #Neurologist #FinancialAid