New med brings familiar Illder dilemma: taking things that make you feel bad in hopes of feeling less bad

... hope vs. dread vs. pain vs. memory vs. possible futures vs....

Two men in fishing gear, one who has white skin and one who has brown skin, hold their poles while sitting in folding chairs laughing as if in conversation, on a blank background, in the website ad for the drug I’m about to start. Did I tell you that I had a gay grandfather I didn’t really know who played a grandfather in drug company ads, including one where they were fishing? That’s a story for another day.

Today I’m starting SCIG. It stands for subcutaneous immunoglobulin. This is the brand I’ve been assigned. The ad on the website shows two guys with fishing gear, hanging out in front of a blank background. That’s how I feel - kinda blank, and wondering what’s going to come out about this latest endeavor, even though I’m so grateful to have the resources to, well, go fishing for an effective treatment.

People may be more familiar with IVIG — the version that’s infused into a vein in the clinical setting or with a home infusion tech. This is the subQ version — and if I am able to get through the 7 week lead-in period where a provider comes to my place to set it up, monitor and train me, I’ll be able to do it on my own.

I’ve wanted to try IVIG for years. It’s super expensive - a biologic treatment that uses antibodies from 10,000 or so people. My former ME/CFS specialist gave me a Pneumovax shot in 2017 — which can be used to evaluate my immune response to components of bacterial pneumonia. She told me my level of immune deficiency wasn’t severe enough to qualify for it.

But last year, when I was trying to sort out reasons I was constantly queasy and often thrown up, I got an IgA test that was bundled in with the celiac test, since low levels of IgA (a type of immuneglobulin in the immune system) can make the celiac test not work.

I don’t have celiac disease, but I do have selective IgA deficiency. This simple blood test — which apparently no one had ever given to me, or had overlooked the results — explains my whole sick life. It’s the most common primary immune deficiency in white people — about 1 in 500 — and half of people will be asymptomatic. But the rest of us will have higher rates of autoimmune disease, allergies, GI and respiratory infections. Hello, welcome to me.

And the immunologist I went to after getting these results told me I absolutely would have qualified for IVIG back in 2017 with those pneumovax results. Sigh.

But lately I’ve noticed there’s some possible advantages to having some majorly important treatments delayed in my illder journey. For example. I have been much more functional in the last few years because my new cardiologist - who I learned about from people with Long COVID - encouraged me to get a sleep study and I was able to get a CPAP machine. Again, I would have qualified for the CPAP many years ago — but there was a major problem with many CPAP machines due to company greed leading to use of cheap, dangerous materials — so I may have dodged a bullet by waiting.

Similarly, IVIG is a bear of a treatment. I took five days of it back in 2010 to try to break out of a flare of neuromyelitis optica spectrum disorder. I got infused from 9-5 every day, like a week-long full time temp job and, as expected, I had lousy flu-like side effects. And it didn’t stop the flare.

The dosage would be less for ongoing treatment, but IVIG still has a fuckload of side effects for many people. SCIG, for many people, has less side effects. So, being told I was unable to get IVIG even though I could have may have allowed me to make it to this time of a potentially less-miserable alternative.

I’ve been thinking about a sort of ladder that could be one of the measures for our journeys with chronic illness. It has to do with an escalation of medication experiences. Of course, not everyone goes through all of these steps, and some go right away to the most hardcore situations but here’s what I came up with this morning.

JD’s Ladder of Mindfuck Illder Treatments

• Treatment I take if/when I feel bad

• Treatment that I have to take every day/week/month/quarter

• Treatment where I’ll feel sick if I don’t take it

• Treatment that I’ll feel sick when I do take it

• Treatment that I'll feel sick when I do take it, and it won’t be clear for a long time if it’s helping me feel better

• Treatment that will never make me feel better, and may make me feel worse, but that may stop progression of disability and/or stop me from feeling even worse.

If you’ve been reading this newsletter for a while or listening to me IRL, you know I’m on a fuckload of treatments. (oh fuck I forgot to do my three weekly injections on Sunday and now it’s Tuesday, not again….)

I’m a kind of best case scenario of white skin and professional class health insurance privilege, medical and medication access, and strangely mild-moderate presentation of a bunch of potentially seriously bad conditions. But yeah, I’m on a lot of over-the-counter, off-label and on-label stuff.

So now we’re adding on SCIV. It fits the category of “Treatment that I'll feel sick when I do take it, and it won’t be clear for a long time if it’s helping me feel better.”

The diagnosis that’s winning me access to the SCIG is the immune deficiency, which is probably the reason I used to get sick every 2-3 months most of my life… But I don’t get acutely sick like that very often anymore because I mask and the people in my household mask.

Have you had lousy colds, frequent sinus infections, and various crap like that, month after month? It’s lousy. And it interfered with my education and relationships, and more. Some people are experiencing this now for the first time because COVID-19 makes you — AND YOUR KIDS — more susceptible to this. But I’m off the fucking rollercoaster for the first time in my life, these past 5 years, and I don’t want to get back on it again.

The previous treatments I have been on that are “Treatment that I'll feel sick when I do take it, and it won’t be clear for a long time if it’s helping me feel better” were immunosuppressive — like rituximab (for which I had to help mount a national campaign to overcome insurance rejection rooted in cross-state bureaucracy, but that’s a whole other other story) - for my temporary diagnosis of multiple sclerosis that was changed to diagnosis of an even more dangerous neurodegenerative condition I had/have called neuromyelitis optica spectrum disorder (NMOSD) that now is in remission.

So in addition to having its own side effects, it led me to being more vulnerable to infections - and this was while I had a kid in day care and then preschool, so I got lots of those little kid diseases where the description says the kids will get over it quickly and only elderly and immune suppressed adults will get sick. It was like having Mono for a year or two - I was still recovering from flares of the NMOSD while constantly getting things like fifth disease and Cocksackie virus.

SCIG isn’t immunosuppressive. In fact, it’s the opposite - I’m going to get pumped up with other people’s immune system bits to help make up for lack of my own. I can’t actually get the IgA replaced as it’s dangerous to do so, but I’ll get supercharged with IgG and hopefully will not only be more resistant to all the shit that everyone is insisting on spreading around me at school and on the subway, etc — but ALSO there is a chance it may be very helpful for my ongoing miseries from MCAS and ME/CFS!

So I feel… funny. I’m having a problematic thing called HOPE which I resent because I really dislike DISAPPOINTMENT. I’m feeling the DREAD of starting something which will probably make me feel at least a little and maybe a lot BAD, and steeling myself to stick it out for at least the 6 MONTHS it may take to see if it may make me feel BETTER. And I’m peeing every 20. minutes or so because I’m pre-hydrating the fuck out of this body because that’s supposed to be helpful for dealing with the thick protein sludge-o-immunoglobulins about to go into me through a bunch of lil needles in my thigh.

I’m super grateful to have this set of memories and problems. And honestly, it is a whole different situation than, for example, when the MS drug I was on increased my chance of having PML — a brain-eating virus that I watched kill my friends who had AIDS.

But I’m weary, and wary. Part of me knows that I may lose access to this medication and much more in the months to come — my hope is that I may be able to chip away at some of the chronically high levels of viruses in my body to reset things in case I have to go off it as part of the consequences of fascism. But I also know that I am far from first on the list to be kicked out of care - the looming threats of passing devastating Medicaid cuts may come to awful fruition before I’ve even gotten up to a full dose of this stuff (though they’re timing the axe to fall after mid-term elections in hopes of shifting the blame to others), and I’m on my spouse’s relatively stable city worker insurance.

So, as usual, we’ll see how it goes.

Thanks for keeping me company today while I wrote this, and for doing all you are doing to keep yourself and others in as safe a place as possible in these fucked times.