Category: Crohn’s

My Last Hospital-Administered Skyrizi Infusion

$320-per-minute infusion in progress (it takes just over an hour).

What does one wear to a $20,000-a-dose drug infusion? At least one person suggested a tiara and evening gown.

Arriving at the hospital

One Skyrizi intravenous infusion dose is 600mg, or 2.1164 .21164 ounces. At $20,000 per dose that’s $9,450 $943,333 per ounce.

CORRECTION: my math was off by a factor of 10. Via JO 753 in a comment below:

“There are 28.3 gramz per ounse. 600 milligramz iz .6 gramz, so an ounse iz 47 dosez. Thats 943,333$ an ounse.

No wonder they can run commercialz for this stuff all day.”

The Queen on her throne.

For comparison, gold is $2,051 per ounce, as of this writing. So Skyrizi retails at more than four fourty-six times the cost of pure gold.

I could have saved so much money if I’d gotten infused with pure gold instead of Skyrizi.

Since starting my Crohn’s disease adventure I’ve learned that basically no one pays the retail price of these drugs. Instead, an insurer pays a fraction, and the rest is written off by the pharmaceutical company and hospital so they can claim they’re “charities” and avoid taxes.

Mmmm, money.

It would be like if I charged $150,000 for my $150 Drawings. Customers would still pay $150 and I’d set up a “financial assistance program” to generously cover the rest. Then I’d mark a net loss of $149,850 per drawing, which I could write off my taxes if I made enough to pay big taxes in the first place, but I don’t because I stay just below the poverty line so I can continue qualifying for Medicaid which pays for my Skyrizi.

Hospital money is fake.

That’s the difference between someone who buys a cheap tiara and fake movie-prop money off Amazon, and someone who is actually rich.

My friend Minette, who took these photos, thought a shot of my back was important.

Anyway that’s it for my hospital-administered Skyrizi infusions. My next $20,000 dose will be a 360 mg/2.4 mL “single-dose prefilled cartridge with on-body injector”. That’s $15,748 $157,222 per ounce, equivalent to about 7.68 76.8 ounces of gold.

$157,222 per ounce
$2,051 per ounce

Gold is looking like a real bargain right now.

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I think it’s working

Crossing a narrow bridge to health?

My “biologic” drug infusion regimen, I mean.
I think my Crohn’s disease is going into remission.
I’ve done some food experiments and have been pooping like a boss.
I don’t trust that I’m fully back to normal yet – I’m still not going to experiment with chocolate or nightshades – but yeah, I think it’s working.

My third and final hospital-administered Skyrizi infusion is this Friday. To celebrate its ridiculous $20,000-a-dose price tag I’m bringing a tiara, a rhinestone-studded purse filled with fake money, and – finally – some hope.

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The Autoimmune Empire: Depression

Example from my wayward youth

Depression is the mind attacking itself. It’s been called a “psychic autoimmune disease.”

This morning, part of me woke up asking, what can I fix?  What problem can I attack?
I know — ME!

My motives are good: what can I purify and improve? But the target is wrong.

My impulses — to fix, to cure, to control — may be overactive and delusional, just as my immune system is overactive and confused. My Crohn’s disease is treated with immunosuppressants, designed to calm down the immune system.

My mind, over time, has learned to calm down itself. I have come to accept that I can control very little, so I have learned to give up more, to surrender. This has required me to endure some grief.

I have also simply run out of steam as I’ve aged. No wonder depression was such a problem of my youth: all that energy! All those good intentions run amok! Age itself acts like an immunosuppressant of the mind. As an older friend once told me of the remission of his own depression: “my angst circuits just burned out.”

I have recovered a lot since my severely depressed youth. But a big stress can trigger depression again, just as a big virus can trigger a body’s immune system to attack itself. In fact, having an autoimmune disease seems to be triggering some depression in me now. I can’t fix my Crohn’s disease. But my mind still responds to the stress by saying, FIX IT! Failing to fix it, my mind turns on itself, because what else does it have at hand?

Only surrender, and grief. I wish my immune system could grieve whatever it needs to grieve and leave my tissues alone. Meanwhile, I hope my mind learns to accept it, because however unpleasant Crohn’s disease is, depression is worse.

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My Auxiliary Digestive System

I have a machine that chews and poops for me!

Shortly after my Crohn’s diagnosis, I bought a masticating juicer:

A masticating juicer, sometimes referred to as a slow or cold press juicer is simply a style of juicer that crushes juice out of ingredients at a slow speed. In typical masticating models, juice is extracted from foods through a strong augur/screw, which pushes ingredients at high pressure against a fine screen/sieve. This not only forces juice out of ingredients, but it is a very efficient method to ensure that all juice produced is kept separate to the remaining pulp. Link

After chewing my food, it poops out the insoluble fiber, something my own digestive tract is not capable of doing properly right now. The pulp comes out one chute; everything else (juice) comes out the other, falls into a pitcher, and gets poured down my own meat-based digestive system, where nutrients are absorbed and turned into more me without aggravating the lesions (trigger warning!) in my colon.

Better pooping through technology

After it has chewed, juiced, and pooped my food, I take the juicer apart and clean it. If I could do that to my own digestive tract, Crohn’s would be a lot easier to deal with. 

If only I could do this with my own large and small intestines.

At the bottom of the juicing chamber is a tiny port through which the fiber gets pushed as it’s separated from the liquid. Occasionally this gets clogged and the machine “backs up.” To get things moving again I merely open the pulp chute and poke at the clog with a special cleaning tool. So much easier to fix these things outside the body.

A meat-based system would require dangerous, specialized, and expensive surgery to remove an obstruction like this. My juicer requires only a plastic pick.

Hopefully my juicer will remain the only external digestive system I need. Because I really don’t want a colostomy bag.

Everything becomes compost eventually.
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Covid Reactive Autoimmune Pathology

In general:

Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19

High risk of autoimmune diseases after COVID-19

Patients with COVID-19 have 43% increased risk for new-onset autoimmune diseases

Autoimmunity is a hallmark of post-COVID syndrome

Inflammatory Bowel Disease (of which Crohn’s is one):

SARS-CoV-2 infection as a potential trigger factor for de novo occurrence of inflammatory bowel disease

Crohn’s Disease (my personal form of CRAP):

COVID-19 as a Trigger for De Novo Crohn’s Disease

Psoriasis (my other personal form of CRAP):

New Onset and Exacerbations of Psoriasis Following COVID-19 Vaccines: A Systematic Review

New-onset and flares of psoriasis after COVID-19 infection or vaccination successfully treated with biologics: a case series

And Eczema, which is not exactly an autoimmune condition but is allegedly related, and which in my case also got worse after the vaccines and further worse after Covid, but hell maybe it’s because I’m just getting old:

Large cohort study shows increased risk of developing atopic dermatitis after COVID-19 disease

My point is, CRAP is a great acronym for this, and as far as search engines are concerned I coined it. You’re welcome!

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