One year ago after I proudly injected my first Pegasys dose at MSK, I sat at home back here on this same couch, writing a blog post about it. I was waiting for side effects to kick in with some kind of anticipation like a recreational drug, but also the complete opposite.

It’s sure been a long strange trip.

Or a boringly painful one.

I did sixteen biweekly dose cycles of interferon straight in total from February 28 to Octber 10. In November and December I continued to recover from whatever that was, my immune system rebellion, very slowly. I held on making any Winter Break plans until the last minute. I was afraid to commit to anything in case I felt worse again and/or would end up pushing myself to do too much. In January I still didn’t feel better enough when I saw Dr. Rampal’s NP Katie Kan in January. We agreed that it is best for me to discontinue Pegaysys for now and continue to rest and recover.

Superficial updates: With so much else to complain about in my last post, i didn’t mention I started shedding hair more than normal, which is a known possible side effect of interferon. So I got that one too, and I’m still losing it. Hopefully it stops soon; I’d say my ponytail is half of what it used to be. Trying to protect my hair with a silk bonnet, I got some weird traction alopecia that may be related. So I have an entire chunk bald spot lost at the crown and got bangs again to hide it. I have I lost some weight too, in a “you look great” but “I feel like shit” situation.

Internal updates: My neuropathy worsened, a new type of it, very delicate skin feeling like everything hurts to touch it. Sometimes it’s unbearable to type on my computer or use the touchscreen phone. At night, worse. In the cold, much worse. It’s most in the fingertips, but can be in my feet, scalp, lower back, other areas of the skin. At some of the worst points even clothes on my body hurt. I also have some bone pain in the shins popping. I have a heating pad arrangement that migrates in the apartment with me daily. Due to the cold affecting my neuropathy plus breathing, as well as my fatigue, I haven’t biked to work except maybe a couple times in months. I have spent an absolute fortune on ubers.

My platelets popped back up. The below chart is of my platelet levels on CBC tests taken at MSK. You can see my diagnosis phase on the left side. Then the period with no tests where I went to Weill-Cornell. Then coming back to MSK and starting interferon. You can see the platelets came down very nicely this past year while I was on the Pegasys, and then promptly went right back up again up since I discontinued.

Back up to nearly a line of best fit. Almost like I never took it in the first place.

Even in this one year since taking interferon, the field of MPN treatment is moving more away from “watch and wait” and more “early intervention.” So although my situation isn’t an emergency, I still want to keep further progression at bay. NP Kan mentioned possibilities:

1. Interferon-alfa-2b (Besremi), which is the next generation interferon of the same type as Pegasys. It has similar side effect profile but possibly more mild.

2. Ruxolimitib (Jakafi) which is a JAK inhibitor. JAK is a gene that some people with MPNs have mutated. My mutation is CALR but this can work for mine too. It’s very expensive and insurance might not cover.

3. Clinical trial for CALR-targeting drug

A reason I sought out Dr. Rampal in Fall 2024 was due to my interest in a clinical trial he was running of a CALR targeting drug INCA033989, though I was not eligible. In the meantime, that drug has shown promising results in the first phase and the FDA has designated it a “breakthrough therapy.” My understanding is that designation will expedite the drug trial going through the rest of the phases to approval and get approved and in pharmacies available to regular patients sooner.

Due to this development, spots in the current trial may be scarce, but there’s another CALR targeting drug trial running now that I might be eligible for. It’s weird considering taking a phase 1 clinical trial, which is the first time a drug is used in humans. These drugs are exciting because they focus on only cells with the CALR gene mutation and therefore do much less damage overall. More precise destruction equals less side effects.

This year was not what I hoped for. Overall the conclusion for now is Pegasys has a net negative impact on my quality of life over the positive gains in the bloodwork. I spent more time in discomfort than I anticipated and lost some on experiences and connections. My mono-like immune crash this fall, which has extended well into winter, was really unlike anything I imagined. Illness, exhaustion, and isolation spanning over five months, made for a melancholy season. Still a pretty good year.

As things are melting now, and days get longer again, I look forward to getting back on the bicycle again (proverbially too). An unexpected outcome from all this:

Pegasys is a cytoreductive therapy. Since I’m now concluded intolerant to it, I have thereby qualified myself to get the breakthrough therapy drug once it’s available. I doggedly chose my interferon path, not knowing where I was headed, for how long, and how low it would go. Yet I’m still ending with doorways of future possibility somehow opened to me, from an otherwise very bad trip. 🍄