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Rituximab: Let's try again

sungo@sungo.io (sungo) — Sat, 07 Feb 2026 10:22:00 -0500

We’re going to try rituximab one more time. The planned dosage is 500mg with an extra slow start to the infusion. The previous dosage was 1g which was always really confusing to me. No health organization that I’ve found, apart from my HMO, recommends a dose that high, particularly for someone like me who has “limited” gpa. 500mg is the usual recommendation for GPA maintenance from both american and european agencies. So we’ll see. That infusion is scheduled for July.

In the meantime, we’re waiting to see what the first rounds of rituximab are going to do. My latest bloodwork is … mixed. My immunoglobulin numbers are low (as they have been) but stable. Neutrophils are high again. C-ANCA titer popped back up but my PR3 antibodies stayed relatively stable. Mostly it reads likes methotrexate has left my system and ritxuimab hasn’t fully caught up.

Symptom-wise, I’m doing ok. Tinnitus has gotten annoying. My joints are a little achey. Nerve pain is elevated. The weather’s not helping, I’m sure. This too reads like I’m in between meds.

Side effects. I’ve not mentioned them because so far I’ve had none, apart from the reactions on infusion day. Does that mean it’s not working? Does that mean that, apart from my reactions on the infusion day itself, I’m one of the lucky ones? Don’t know yet.

So, we’re in a waiting game. I’ll get another blood draw in July prior to the next infusion and we’ll see how things look then. Unless, of course, I start getting sick and there’s evidence my immune system really crashed out. In theory, the effects of RTX should peak in March, maybe April.

Apart from the “and it might kill you” bits, this waiting game is probably my least favorite facet of rituximab. With MTX, I knew what it was up to in the first few hours. I could tell that subq was working better (and with worse side effects) in the first day. With rituximab, I have to wait months. The ops nerd in me also wants constant blood work so I can track how things are going. Waiting months between blood work is also a struggle. The long term wins are worth it but I struggle with patience.

Disclaimer: This is not medical advice. This content is intended for non-commercial informational purposes only. Do not use it as a substitute for advice from a trained health professional.

Rituximab: Round 2 Failed

sungo@sungo.io (sungo) — Sun, 01 Feb 2026 12:38:00 -0500

sad trombone

The second round of rituximab was a failure. I developed histamine-type reactions extremely early on and the decision was made to discontinue treatment rather than blast me with steroids again.

So what does that mean? I have no idea. I have a follow-up with my rheumatologist at the end of the week to discuss. I really don’t want to go back to MTX but there aren’t a lot of options. I’m leaning towards trying a lower dose of RTX and a slower infusion start but I have no idea what the doc is thinking. More to come.

Disclaimer: This is not medical advice. This content is intended for non-commercial informational purposes only. Do not use it as a substitute for advice from a trained health professional.

Rituximab: Round 1 Complete

sungo@sungo.io (sungo) — Fri, 16 Jan 2026 22:21:00 -0500

Well, it seems I survived round 1 of rituximab and I’m staring down round 2.

Oddly, for me, there’s not much of a story to tell. I spent 8.5hrs at the infusion center, had a nice private room somehow. My partner came along which was very nice and they were wonderful both for support and wrangling the nurses when the infusion pump started beeping for whatever reason. I had one minor reaction very early on, got an extra round of steroids, and it was smooth sailing from there. Read a couple books, listened to music.

I’ve had zero side effects that I’m aware of beyond the after-effects of 250mg total of methylprednisolone. That shit is life altering. I’ve had some positive effects, most of which can be pinned on the steroids. The MTX brain fog and fatigue have cleared which is fucking amazing. Whole new brain.

Yes, I recognize that I started rituximab a month earlier than I previously suggested. The side effects we presume to be caused by MTX began to stack up and I landed in the urgent care with a GI bleed, in early Dec. We decided to cancel plans and rearrange all the things to start rituximab as fast as possible.

The problem is, once the MTX cleared my system, some new shit started in my stomach. We’re still sorting that out and it is not fun. But it seems unrelated to rituximab since it started beforehand, and this post is a ritxuimab update. I’ll post more about the stomach drama as I have knowledge. For now, I’ll just say “fucking ow”.

I go in for round two of rituximab on Jan 20.

(Someone wants to know the cost. We belong to an HMO and they charged us $30. The “cost visit summary” says they’d have preferred to charge us $14k. No, I didn’t mistype. The uninsured cost, according to our insurance, would have run around fourteen thousand dollars per shot. They charge us thirty dollars. Thank you, healthy members of the HMO, for making this happen for me.)

Disclaimer: This is not medical advice. This content is intended for non-commercial informational purposes only. Do not use it as a substitute for advice from a trained health professional.

I'd prefer a marathon of Highlander 2

sungo@sungo.io (sungo) — Wed, 03 Dec 2025 21:17:00 -0500

sungo: doctor quote of the day: survivable does not mean tolerable

r: oh, were you discussing Highlander 2?

sungo: I’d prefer a marathon of Highlander 2 to what we were discussing.

g: that is a visceral choice of the options at stake Oof

My rheumatologist, at my most recent follow-up, asked me to detail my current condition and how the meds are treating me. I talked about my experiences with subcutaneous methotrexate, my newfound preference for 1 mL syringes, how I feel like I am responding well to subq. I also talked about how I am still clearly not in remission. I’m close, so close, but not there yet. I talked about the daily horrors that my digestive system is putting me through. Here, my doctor started getting a bit agitated and eventually broke in. “This is intolerable. We need to consider rituximab.” <record scratch> My symptoms are improving. My symptoms are nowhere near “organ/life threatening”. How could I quality for rituximab? The doc said “survivable does not mean tolerable. You are surviving the medication. Your body is not tolerating the medication.”

And yeah, friends, when I sit and think about it, I’d prefer a marathon of Highlander 2 to carrying on with how my life is today.

Life with subq mtx

A few weeks ago, I wrote the words “apocalyptic cramps” in my tracking journal. On that particular day, I took my injection of MTX and, starting 1.5hrs later, I had cramps bad enough that I could see god. These were PMDD level cramps, repeatedly over the course of four hours, combined with what you might imagine were pretty horrific bathroom times. This was not the first time. Not even the first time that month.

But it’s fine because the brain fog is (probably) gone, the general muscle pain is much lower, and I feel decent most of the rest of the week… if you ignore the fun bathroom times every morning for two to three days following MTX. It’s fine because I’m not getting the blackout migraines I used to get from oral MTX. Except I am getting pretty bad occipital neuralgia (which is of course different than a ‘migraine’) throughout the week, just not “lie in a dark room and hope for death. a quiet death with no bright lights”. Except that once.

The thing about having a medical tracking journal is I have notes in my own handwriting, that I remember putting to paper, with all of the details. These are only the bits I thought abnormal. I’ve normalized so much stuff, usually gut or neuropathy related, that I just don’t even write down anymore. When people who are not me read or hear my status report, they get … upset, sad, a particular far off stare. It is clear that, even for all the recent gains, I am reporting status from at least a minor hell.

Life with subq mtx is much better than it was with oral mtx. But I am still homebound, miserable, constantly symptomatic (or full of side effects) and exhausted. And resigned to my fate. Because the GPA isn’t trying to take my major organs yet, thankfully, so I simply, don’t qualify for any of the other intervention options. I put that out of my mind and got on with the business of surviving.

Turns out I was wrong. Turns out that failure to tolerate MTX is qualification for rituximab, potentially.

Who knew?

Rituximab

Rituximab is a monoclonal antibody that suppresses CD20+ B-cells, a type of white blood cell. The general theory is this suppression disrupts the production of ANCA, the antibody by which my body attacks itself [1]. (Now, to be fair, the current research suggests the neutrophils being targeted, at least some of them, are seriously fucked up and deserve their fate [2]. But that’s a separate problem.)

Studies show that Rituximab is as effective, at least, as MTX in achieving remission, moreso than the older options. There are two problems, though. First, for most folks, MTX has less side effects. Second, the side effects that MTX has are less dangerous.

When you say dangerous…

Rituximab is given as an infusion, four to six hours, usually, not including prep work. It’s a full day in the chair in the infusion center under direct medical care. So it’s already special (and more costly).

The NIH’s list of adverse effects is something else, by which I mean “terrifying” [3]. One study found that 57% of patients (203 out of 356) suffered grade 3 or 4 (severe to life threatening) toxicities [1]. That same study found that reactions to the infusion itself were most common and 80% of all fatal reactions occured with the first infusion.

Rituximab’s entire job is to suppress production of a type of white blood cell, so lymphopenia and neutropenia (not having enough white blood cells to fight off infections) are real concerns.

To summarize, Rituximab could kill me the first time out. If not, the secondary infections might.

But my absolute favorite “adverse effect” is that prior viral infections can reactivate. Herpes, Hepatitis B and C, West Nile, Chickenpox, and others. And why yes, I had chickenpox as a kid and did not have a fun time. There’s a real risk that, while taking rituximab, I could fucking get chickenpox again, or develop shingles.

“Relatively safe and well-tolerated”

“Rituximab is a relatively safe and well-tolerated drug” [3], according to NCBI. A systemic literature review in 2019, including nine trials related to ANCA-associated vasculitis, stated that “studies providing data about AEs [adverse events] showed comparable rates of incidence between RTX and the control groups” [4]. Single center studies corroborate the safety and efficacy of Ritxuimab [5], [6].

The scare sheet for Ritxuimab is no fucking joke, for sure, and the risk of infusion reactions in particular is quite real. But this is why ritxuimab is delivered via infusion at an infusion center, supervised by medical professionals. Most infusion reactions can be managed by slowing the rate of infusion or by administering acetaminophen or intravenous antihistamine [1]. To quote Buch et al, “Severe infusion reactions leading to drug discontinuation are uncommon (<1%) and are mainly restricted to the first infusion” [7]. My HMO’s guidance for rituximab indicates a whole fun bag of preparatory medications to cut the risk of infusion reactions [8].

Cytopenia is reported in up to 8% of patients in the oncology literature but very rare for autoimmune patients, “for unknown reasons” [7]. Tesfa et al found, however, in one cohort that the rate of neutropenia in GPA patients was potentially significantly higher than RA patients (23% vs 3% respectively) [9].

Buch et al also note that low baseline levels of IgG, including before rituximab administration, as being associated with an increased risk of serious infections [7]. My immunoglobulin numbers are kinda shit on their own, apparently, per my quarterly blood work. They are high enough to begin treatment but low enough that my doctor and I have already discussed intravenous immunoglobulin as an option.

What would Europe do?

To quote the 2022 update to the EULAR recommendations for the management of ANCA-associated vasculitis [10]:

“For induction of remission of non-organ-threatening or nonlife-threatening GPA or MPA, treatment with a combination of GCs and RTX is recommended.”

“[T]he use of RTX over MTX or MMF should be considered in patients with GPA and MPA even without organ-threatening manifestations as RTX-based induction and remission regimens are associated with higher rates of sustained remission and lower GC exposure.”

“For maintenance of remission of GPA and MPA, after induction of remission with either RTX or CYC, we recommend treatment with RTX.”

The American College of Rheumatology disagrees [11]. The difference lies in the amount of studies specifically related to non-organ-threatening GPA and the use of MTX and RTX. There are lots of specific studies pertaining to MTX. The RTX studies however have focused on severe cases. “Methotrexate is currently recommended over rituximab because of the larger body of evidence and clinical experience with methotrexate treatment for this patient group; clinical trials are needed to compare their efficacy” [11].

And ultimately, methotrexate does not have a box warning for maybe killing you in the first 24 hours. Let’s be real, that warning puts a huge damper on any rituximab conversation. Further, MTX can be given at home with pills and most often is for GPA patients. “Take some pills and let’s see how we do” vs “spend one day a week at an infusion center for the next month or more” is also a challenging conversation. That is a lot of time off work and here in the States, where our social safety net is almost nonexistent, it’s a very difficult sell unless you feel like you’re dying.

The Plan

So what’s the plan? Well, we’ve tried it the American way. Now it’s time to try the European approach. We’ll try rituximab. I would regret not trying, even with all the possible drama. If there’s a chance that I can see my way out of this Highlander 2 years-long marathon, then I need to try. And maybe I end up back on MTX but I will have at least tried to find a way out.

First, though, I need some vaccines. At the very least, I’m looking at the shingles vaccine because, really, fuck chickenpox and shingles, and the Hep-B vaccine just to be sure. Then there’ll be a couple weeks off of MTX to let the vaccines do their thing. And on to ritxuimab at the end of January.

But I have to admit it. After all this research and typing, if you haven’t noticed, I’m terrified. I’ve written this whole post to help myself build a narrative around this course of action. To help me have data and case histories and facts so I can get my head around this idea that I am going to sit in an infusion center and take a drug that could kill me on the spot on the hopes of … well, there are a lot of hopes. The hope of having a life again. Of not spending the next few decades of my life exhuasted and miserable and full of GI side effects.

I know the infusion center I’ll be visiting. My partner is a relatively recent cancer survivor, including a full run of chemotherapy. They received treatment at the same center I’ll be visiting. I sat with them at the beginning and end of their chemotherapy. And now I’ll be in the big chair.

It’s… a lot and I don’t know that I’ll be mentally settled until the moment I sit in that chair and give my consent to begin treatment. Until then… I’m going to be staring into space a lot, I think.

References

[1]

P. M. Kasi, H. A. Tawbi, C. V. Oddis, and H. S. Kulkarni, “Clinical review: Serious adverse events associated with the use of rituximab - a critical care perspective,” Critical care, vol. 16, no. 4, p. 231, Aug. 2012, Accessed: Nov. 17, 2025. [Online]. Available: https://doi.org/10.1186/cc11304

[2]

K. Kessenbrock et al., “Netting neutrophils in autoimmune small-vessel vasculitis,” Nature medicine, vol. 15, no. 6, pp. 623–625, Jun. 2009, Accessed: Aug. 15, 2025. [Online]. Available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2760083/

[3]

N. Hanif and F. Anwer, “Rituximab,” in StatPearls, Treasure Island (FL): StatPearls Publishing, 2025. Accessed: Nov. 23, 2025. [Online]. Available: http://www.ncbi.nlm.nih.gov/books/NBK564374/

[4]

C. Kaegi et al., “Systematic Review of Safety and Efficacy of Rituximab in Treating Immune-Mediated Disorders,” Frontiers in immunology, vol. 10, p. 1990, Sep. 2019, Accessed: Nov. 25, 2025. [Online]. Available: https://pmc.ncbi.nlm.nih.gov/articles/PMC6743223/

[5]

R. Cartin-Ceba et al., “Rituximab for remission induction and maintenance in refractory granulomatosis with polyangiitis (Wegener’s): Ten-year experience at a single center,” Arthritis & rheumatism, vol. 64, no. 11, pp. 3770–3778, 2012, Accessed: Nov. 25, 2025. [Online]. Available: https://onlinelibrary.wiley.com/doi/abs/10.1002/art.34584

[6]

X. Puéchal et al., “Rituximab for induction and maintenance therapy of granulomatosis with polyangiitis: A single-centre cohort study on 114 patients,” Rheumatology (oxford, england), vol. 58, no. 3, pp. 401–409, Mar. 2019, doi: 10.1093/rheumatology/key117.

[7]

M. H. Buch et al., “Updated consensus statement on the use of rituximab in patients with rheumatoid arthritis,” Annals of the rheumatic diseases, vol. 70, no. 6, pp. 909–920, Mar. 2011, Accessed: Nov. 25, 2025. [Online]. Available: https://pmc.ncbi.nlm.nih.gov/articles/PMC3086093/

[8]

“Treatment Rituximab-abbs - Neurology.” Accessed: Nov. 17, 2025. [Online]. Available: https://mydoctor.kaiserpermanente.org/mas/structured-content/Treatment_Rituximab-abbs_-_Neurology.xml

[9]

D. Tesfa et al., “Late-onset neutropenia following rituximab therapy in rheumatic diseases: Association with B lymphocyte depletion and infections,” Arthritis & rheumatism, vol. 63, no. 8, pp. 2209–2214, 2011, Accessed: Nov. 25, 2025. [Online]. Available: https://onlinelibrary.wiley.com/doi/abs/10.1002/art.30427

[10]

B. Hellmich et al., “EULAR recommendations for the management of ANCA-associated vasculitis: 2022 update,” Annals of the rheumatic diseases, vol. 83, no. 1, pp. 30–47, Jan. 2024, Accessed: Nov. 23, 2025. [Online]. Available: https://ard.bmj.com/content/83/1/30

[11]

S. A. Chung et al., “2021 American College of Rheumatology/Vasculitis Foundation Guideline for the Management of Antineutrophil Cytoplasmic Antibody–Associated Vasculitis,” Arthritis & rheumatology, vol. 73, no. 8, pp. 1366–1383, 2021, Accessed: Nov. 25, 2025. [Online]. Available: https://onlinelibrary.wiley.com/doi/abs/10.1002/art.41773

Disclaimer: This is not medical advice. This content is intended for non-commercial informational purposes only. Do not use it as a substitute for advice from a trained health professional.

A Year of GPA

sungo@sungo.io (sungo) — Tue, 16 Sep 2025 22:36:00 -0400

I formally received a diagnosis of GPA on Sept 16 2024. I’d known for a few days thanks to the miracle of MyChart test results and a lot of web searching. The formal call with my rheumatologist however was Monday Sept 16 2024.

I was going to tell the story of how I got to the diagnosis but I think it may be more important to talk about the time since.

Warning: this is a dark one.

You may not want to go down this rabbit hole, or you might want to do so at better point in your day. Regardless, this post isn’t fun so beware.

We need to talk…

On Sept 16, my rheumatologist called me to talk about my test results. If you’ve ever had a partner say “we need to talk”, in that one particular tone of voice, then you know how my doctor started the call. My C-ANCA came back as 1:320. Normal is 1:20. My anti-PR3 antibodies came back as 123.2. Normal is 1.0. C-ANCA is about 90% specific for GPA. Couple it with high anti-PR3 antibodies, and you’ve won yourself a prize.

To be honest, I don’t remember a lot of what she said. I process things on a delay and she threw a lot of information at me all at once. But it came down to: this isn’t a death sentence but it is a life sentence. Some folks achieve full remission. Many do not. The disease is super rare but it seems we caught it early. We need to run some more tests. We need to start treatment immediately.

So we ran tests. The next day, I gave up nine vials of blood to see if my immune system could handle treatment. The tests came back ok. Not great. I was borderline low already but still technically normal.

Two days after that, I had a lung function test. Most folks who get a GPA diagnosis present with failing kidneys or seriously impaired lung function due to infiltrates. I passed at 105% expected lung function. (I grew up in choirs and other vocal pursuits. I suspect 105% was a decrease in function over time for me tbh.)

Then I had a week off of work, a pre-scheduled vacation week. Instead of vacation, I got two CT scans and three MRIs. The CTs were for the GPA diagnosis. The MRIs were attempting to get more information on whether all my joint pain was mechanical or nerve.

The CTs found.. well, they found a lot but most of it subclinical. Look, don’t get scans unless you want to find something, particularly in your 40s. The scan will almost always find something weird and the vast majority of the time, you can’t do anything about it. All you can do is write it down and see if it changes in a couple years.

For these purposes, though, the chest CT found granulomas (the G in GPA) in my lungs, old ones, probably from the 2019 attack. Not enough to cause problems but enough to confirm diagnosis. The doctors did not feel a need to try and get one in a biopsy, thankfully.

As for my joints? Well, I’ll put a different page up eventually about what else is wrong with me soon. Sadly, GPA isn’t the only band playing in town right now.

With the tests back, mostly as expected, we started treatment. 20mg of oral prednisone daily to start. The usual plan for GPA is to start with a medium to high dose of glucocorticoids and then swap that for methotrexate or rituximab, depending on disease severity. So we started at 20mg of prednisone a day, and started 15mg of methotrexate a month later.

And then shit got dark…

My body generally hates glucocorticoids and methotrexate. Gastritis, ridiculous IBS, nerve pain, occipital migraines, both constipation and diarrhea. Brain fog and ME/CFS-style fatigue. I lost the use of my left hand for two days. I gained the ability to feel all my teeth individually including my wisdom teeth that had been removed months prior. I lack a uterus but I understand that my cramps likely came close to PMDD levels. (I said “close” but I’m quite sure I didn’t achieve full enlightenment. Y’all have it rough.)

Naturally, I got the traditional moon face and some of the weight gain.

For two months, at 15mg of prednisone and above, I stopped having an internal monologue and processed everything externally and verbally. This is interesting because I’m autistic and tend towards functionally mute. I was sitting at the dinner table one evening and noticed my partner giving me a bizarre look. I asked about it and they said “you haven’t stopped talking for over a half hour. This is literally the most I’ve ever heard you say at once in our twenty years together”.

I need to emphasize here that I was on relatively low doses of everything at this point. 20mg of prednisone is barely “medium” strength dose. Many folks start treatment at 40mg and 60mg of prednisone. I was also at 15mg of methotrexate which is a small starter dose.

And then shit got darker…

The goal with treatment at this point is to beat down the GPA until its in remission, taper off of the steroids, replace them with methotrexate, and be happy in remission land. It was rough, way rougher than anyone expected, but there would be an end to this, in happy remission land. I just had to tough it through.

Hope is dangerous. In fact, it’s been one of the larger dangers for me throughout this last year. I had hope for remission. I had hope to taper off of steroids. I had hope that my various reactions to treatment would cease.

I no longer have hope.

In the first attempt to taper off of steroids, I experienced a flare / relapse that was worse than any symptoms I’d had to date. It is possible, it turns out, for every bone in your body to hurt. It is possible for every piece of connective tissue to hurt. It is possible for those to happen simultaneously. I would like to never experience that again. Except I did, during the second attempt to taper off of steroids.

I stopped trying to taper off of steroids in early 2025. The minimum viable dose for me currently is 5mg of prednisone daily. Any less than that and my bones hurt. Any more than 10mg and gastritis takes over and ruins the party.

And then things normalized…

By early 2025 though, I was in somewhat of a rhythm. Methotrexate day was a wash, don’t make any plans, prepare to hole up in a dark quiet room near the bathroom. The first couple days after, my joints would paradoxically hurt more as the vasculitis inflammation subsided but the non-GPA arthritis took over. My gut was always a mess but it was a bit better in the early days after a methotrexate dose. Usually, three days after a dose was my peak. I’d start to slide down after that and start experiencing symptoms again on the day before a dose.

I was still plagued with brain fog and fatigue, gastritis, chronic nerve pain. But my lungs were fine, kidneys fine, no infections, and my joint point was were really improved.

So it wasn’t fun but life had become somewhat predictable.

And then I got sick…

I got a middle ear infection out of the blue in May and needed antibiotics. For antibiotics to be worth anything, I had to stop the immunosuppressants, specifically the methotrexate, for at least a week, two to be safe. Also, a random ear infection is how my big flare in 2019 started (and the smaller flare in ‘22). I wanted to know if GPA was impacting my sinuses and ears now.

First we had to eliminate normal causes for ear and sinus infections. I ended up on two rounds of antibiotics and I was off of methotrexate for most of a month and a half. The antibiotics cured the ear infection but not the sinus congestion. Then I was off to a CT scan of my sinuses which showed nothing at all. Every thing’s normal in my sinuses. There are no granulomas or other nasties in my sinuses which is great news. That didn’t explain why I have little airflow through my right sinus.

In August, my head/neck doctor thought we should give nasal glucocorticoids a try. Nasal steroids shouldn’t be too bad, they said. Don’t have to worry about the side effects from regular oral glucocorticoids they said.

Friends, they were wrong. The gastritis and related gut issues started at the three day mark. The occipital migraines started a day later. The brain fog, the nerve pain, all of it came roaring back like I’d added an additional 10mg of prednisone to my life. It didn’t even occur to me that the nose spray might be the issue until I went to see my primary care.

I was on nasal spray for about three weeks. And here we are, about three weeks later, and my gut is just now returning to baseline. I learned a couple of lessons here. One, no more glucocorticoids for me unless absolutely necessary (and I need to figure out a food solution for when they are). Second, no more going off of methotrexate unless it’s absolutely necessary. My GPA is waiting in the wings, right now, just biding its time for me to slip up. Which is why…

And then I changed to subcutaneous methotrexate…

In August, my rheumotologist suggested I switch from oral to subcutaneous methotrexate. It had become clear that I wasn’t responding to treatment like most folks do. I shouldn’t be relapsing and rebounding like this and jumping my steroid dose was clearly not an easy option. What if I wasn’t absorbing the drug properly because my gut’s a mess? What if the methotrexate is part of the gut problem too and we can take it out of the equation? After all, many patient experience a drop in adverse gastric events by changing to subq methotrexate (at the cost of some additional brain fog and fatigue) [1].

With some great trepidation, I agreed. I struggled with this change, to be honest. I still do. Injecting myself weekly is a stressful event and my generalized anxiety is upset by it.

I want to tell you that miracles occurred and everything is magically better. I want to tell you that no darker tales await. Sadly, I can’t. But there is a bright part.

First, the horrors. It turns out that I am not “most patients”. My day-of gastric adverse events are so much worse. Mind-bending cramps, diarrhea, occipital neuralgia, brain fog (though that might be from the neuralgia). About an hour after I inject myself, the party gets started and it usually doesn’t let up until the next day. It’s real bad, not universally, just about half the time. Of course, the unpredictability is its own problem.

But there is a bright side. On the other days in the week, my non-mechanical joint pain is nearly gone. Fatigue and brain fog are so much less. I have my brain back (mostly) and feel better in that regard than I have in a year, maybe two or more. My mood’s generally better and I’m getting back into my hobbies.

If it weren’t for the bright side, I’d go back to oral methotrexate in a heart beat. These day-of side effects are pretty terrible. But the bright side exists and is great and worth, so far, the horrors.

And here we are…

I have second thoughts about publishing this post, if I’m honest. This is probably the darkest thing I’ve posted publically since an accidental permissions oops on livejournal back in the 00s. It was pretty awful for me to relive typing it out and I’m pretty sure you didn’t have any fun getting here.

But I put my site back online with the intention of documenting my saga on the hopes that it helps someone or helps them feel less alone, to share the story of my limited-subset GPA. So maybe it’s important to say to you that this disease may not be actively trying to kill my major organs but it fucking sucks nonetheless. Maybe it’s important to share publically the stuff my doctor isn’t concerned about because the meds are required and there’s nothing we can do about the side effects anyway. Maybe its important to record that these meds are awful and there’s nothing I can do but soldier onwards.

I don’t know. But I will say that I’m allowing myself a little hope that subq methotrexate will make my life a lot better for five to six days a week. And that’s not nothing. I like having my brain back, to have hobbies, to feel competent in my job, to move without so much pain, even if it does mean one to two days of mind-destroying gut symptoms and migraines.

And maybe that’s the most important part for me, typing out and sending out publicly that after a year in which I lost all hope for a better future, a year where I asked my doctor to stop giving me anything but the cold hard facts, that after all this, I have a kernel of hope that maybe things will be 5/7 ok. I’ve gone from maybe 1/7 to 5/7 and that’s worth celebrating and worth a little hope.

References

[1]

J. R. Curtis et al., “Patient’s experience with subcutaneous and oral methotrexate for the treatment of rheumatoid arthritis,” Bmc musculoskeletal disorders, vol. 17, p. 405, Sep. 2016, Accessed: Aug. 22, 2025. [Online]. Available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5037591/

Disclaimer: This is not medical advice. This content is intended for non-commercial informational purposes only. Do not use it as a substitute for advice from a trained health professional.

sungo's GPA

sungo@sungo.io (sungo) — Sun, 24 Aug 2025 15:52:00 -0400

3.9. my GPA is 3.9, drug down by a poor showing in phys ed.

Awful attempt at humor complete.

Look, in the chronic illness game, you take the humor where you can.

My situation is … complex and I’ll talk about the rest eventually. But GPA is the big one, the one that brings all the doctors to the party (well, like two, it’s a small party). What is this thing, and what is my version of it?

Granulomatosis with polyangiitis (GPA) is a type of vasculitis — chronic inflammation in your blood vessels. GPA involves:

Inflammation in many different types of blood vessels throughout your body (polyangiitis)

Inflammatory masses called granulomas forming in your blood vessels and organs (granulomatosis)

[1]

GPA is necrotizing granulomatous inflammation usually involving the upper and lower respiratory tract, and necrotizing vasculitis affecting predominantly small to medium vessels

[2]

What’s this thing do? It restricts blood flow to places like the kidneys, lungs, sinuses and leaves little rocks all over the place. The human body is not normally full of little rocks, if you weren’t aware. It can affect any part of the body at any time in any combination.

The granulomas, the little rocks?, they do… we don’t really know. They impede blood flow, increase inflammation, and the like. They can become pseudotumors, weird bumps on your elbows, or just chill. But normal bodies aren’t full of little rocks and we just don’t know what all happens yet.

How rare is it?

As of 2022, the worldwide prevalence of GPA (how many are actively afflicted) is estimated at 96.8 per million. Worldwide incidence of GPA (how many are newly diagnosed) is estimated at 9.0 per million/person-years. (If we watched a million people for one year, we expect to see nine cases.) [3]

That puts us at around 33k afflicted in the USA and 784k afflicted worldwide. Not quite enough to warrant a dedicated Etsy or Tiktok presence.

I’m told that GPA comes up in med school in a very brief section about vasculitis. It is mentioned because the granulomas are interesting, and then everyone moves on because it’s so rare “we’ll never see it”.

But really, we’re still learning just how rare (or not) diseases like GPA, eGPA and MPA truly are because the relevant antibodies weren’t described until 1982 and the blood test to see them wasn’t widely available until the end of the 90s. So even though GPA was formally described by the Nazis back in ‘36, we’re still developing the data sets.

How bad is it?

Left untreated, average life expectancy is five months, with less than 50% surviving a year. With treatment, 80% survive at least eight years. [1], [4]

As I said earlier, our data is still a little spotty. Until pretty recently, most GPA diagnoses were made on the death bed. Kidneys failing, lung infiltrates compromising breathing, a plethora of mysterious confusing symptoms, and some doctor decides to throw a test on the pile for ANCA and anti-PR3 antibodies and bam we have a diagnosis. Folks with lesser symptoms slipped through the cracks because they didn’t warrant the tests and differential diagnosis. Usually they landed with a diagnosis of something like rheumatoid arthritis which happens to have a similar treatment plan.

Further, GPA tends to present in 45 - 65 year olds, with most being in their 60s due to the aforementioned problems [4]. So “most survive eight or nine years”, in many cases, translates to “and they lived happily (?) ever after.”

No really, how bad is it?

GPA can take a bite out of you in any number of un-fun ways [4], [5], most of which aren’t fatal.

Fever, weight loss, general malaise (feeling like shit all the time for no apparent reason)
Recurring, slow resolving ear infections that can result in loss of hearing or deafness
Inflammation and pseudotumors in the eyes, which can lead to vision loss or blindness
Frequent nosebleeds, erosion of the nasal septum, collapse of the nasal bridge
Narrowing the windpipe, aka glottal stenosis
Lung infiltrates, leading to loss of lung function and bleeding
Arthritis in… well, everything
Joint and muscle pain (this is really underselling it)
Neuropathy, usually bilateral (numbness, tingling, shooting pains in the extremities)
Kidney failure

Some folks get few symptoms. Some folks get all symptoms. Some folks get new ones like significant gastrointestinal involvement (it me) [6], [7], [8].

But it gets better with treatment, right?

I guess? Yes, it does. But here’s the thing. This is a spectrum. Some folks achieve full remission. Many folks do not. Even the folks who achieve full remission will almost certainly relapse within the first few years.

Most relapses of GPA or MPA occur in the first 12–18 months after cessation of immunosuppressive treatment, although they can appear after more than 10 years after the initial presentation. [9]

In a 2013 study of 838 systemic vasculitis patients, 27% developed new severe manifestations after diagnosis and 37% developed new non-severe manifestations [10].

And even once you get past all that and into remission, you are still probably on an immunosuppressant of some variety. These drugs have their own side effects and their own risks, namely that of secondary infections. (If you stopped wearing a mask, why on earth would you do that? Go buy more.)

To depressingly quote Nefrología [9]:

The improvement of immunosuppressive treatment has transformed vasculitis into a chronic disease and, consequently, the priorities of patients have been readjusted to this reality. Instead of focusing on the consequences of organic damage, patients consider fatigue and chronic pain as the main factors of the disease that impair their quality of life.

Despite the advances of new induction drugs in vasculitis, the benefits in quality of life are modest and rarely become normal.

But you’re alive.

Yes, when treated, the vast majority of us live a long ass time. Is it happy party time? No. If you’re a long term methotrexate user, will you see the sun again? Probably not. If you have to stay on prednisone long term, will you weigh more than you want? Absolutely.

But you will be alive. I will be alive.

This is a life-changing disease, for sure, but the numbers say it is typically a survivable one. Just…. just don’t your hopes up for perfect long-term symptom-free remission.

How bad is it for you, individually?

I have what the Americans call “limited subset” GPA where my kidneys do not seem to be involved. They seem fine, thankfully. (That may not last forever.) Folks like me typically get a diagnosis of fibromyalgia or rheumotoid arthritis, until shit gets dark. In fact, those were the diagnoses I expected. But my rheumotologist threw an ANCA and anti-PR3 test into the mix because why not and here we are.

Symptom wise, here’s where I am today:

Chronic rhinitis
Signficiant joint and muscle pain
Significant gastrointestinal involvement
Neuropathy
An abdominal aneurysm
Might be getting glaucoma from the treatment

I’ve had two major flares of more traditional GPA in the past, in 2019 and 2022. I probably should have gone to the hospital both times but I had crap health insurance and rode it out into an “asthma” diagnosis from a lesser doctor. I had unstoppable ear and sinus infections and coughed my fool head off constantly for a couple months, barely able to breathe, until that “asthma” diagnosis resulted in a treatment of corticosteroids. Fun thing is, the prednisone they give you to squash an asthma breakthrough is the same prednisone they give you to bring GPA under control. The maintenance inhaler they give you for asthma is oral inhaled corticosteroids. So in both cases, the asthma drugs put my disease went back into remission temporarily.

I got diagnosed because the lesser-known symptoms cropped up in 2023 and started getting worse. Joint and muscle pain were/are the worst of them and exacerbated my existing mechanical disability. The vasculitis made my existing arthritis and neuropathy issues worse. My rheumatologist ran all the tests they could. In 2024, ANCA and anti-PR3 tests gave us the initial diagnosis, CT scans confirmed granulomas in my lungs. (A brand new nurse in 2019 spotted the granulomas in my x-rays when making the referral to my first pulmonologist but didn’t know the proper term apparently so the pulmonologist dismissed his concerns.)

Good news is:

no apparent kidney or liver involvement
105% lung function

The bad news is that after a year of treatment, I am not in remission yet. I thought I’d gotten there in March but then I got an ear infection and kind of all hell broke loose. We’re sorting through it and what it means for the treatment plan now.

How are they treating it?

My current treatment plan is 25mg/week of methotrexate (switching from oral to subcutaneous) and 5mg/day of oral prednisone. It’s possible I’ll switch to rituximab infusions in the spring but we’re trying to avoid it, for so many reasons. I don’t know right now if I can avoid it. It’s not been a good symptom month.

How did this happen?

We’re still figuring that out, generally. GPA is an autoimmune disease, in that the body produces antibodies against itself, specifically ANCA anti-PR3 which targets neutrophils, a critical component in the innate immune system [4]. How that gets started, though, is still being researched. There is good progress towards finding genetic markers [11] and growing evidence of environmental and infectious triggers (particularly Staphylococcus aureus) [12].

Why me? There’s no good answer to that because we don’t have a precise etiology of the disease. But it’s clear from the data so far that I did not do this to myself through stress and lifestyle choices, as some might say for autoimmune diseases in general. (Those people are assholes, to be clear.) I lost a dice roll along the way.

What now?

I keep pushing forward. I don’t know what else to do. I’ll do a full post on my head space and my day to day experience at some point. But in the end, I keep pushing forward. I’m holding down a regular tech job, which takes most of my energy in the day. Trying to stay alive (or sometimes just stay awake) after work. I’m doing ok at that so far. Not perfect, of course, but ok.

I often say “hope is dangerous” and hope is not on offer anymore. Even my doctors have learned that lesson. The future does not look amazing, characterized by chronic pain, fatigue, brain fog. But the future does currently look like it exists. Alive is best and there’s little doubt, today, that I’m going to live a good while longer.

References

[1]

Cleveland Clinic, “Granulomatosis with Polyangiitis (formerly Wegener’s Granulomatosis).” Accessed: Aug. 24, 2025. [Online]. Available: https://my.clevelandclinic.org/health/diseases/granulomatosis-with-polyangiitis-formerly-wegeners-granulomatosis

[2]

J. C. Jennette, “Overview of the 2012 Revised International Chapel Hill Consensus Conference Nomenclature of Vasculitides,” Clinical and experimental nephrology, vol. 17, no. 5, pp. 603–606, Oct. 2013, Accessed: Aug. 17, 2025. [Online]. Available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4029362/

[3]

R. Redondo-Rodriguez, N. Mena-Vázquez, A. M. Cabezas-Lucena, S. Manrique-Arija, A. Mucientes, and A. Fernández-Nebro, “Systematic Review and Metaanalysis of Worldwide Incidence and Prevalence of Antineutrophil Cytoplasmic Antibody (ANCA) Associated Vasculitis,” Journal of clinical medicine, vol. 11, no. 9, p. 2573, May 2022, Accessed: Aug. 24, 2025. [Online]. Available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9106044/

[4]

P. Rout, P. Garlapati, and A. Qurie, “Granulomatosis With Polyangiitis,” Treasure Island (FL): StatPearls Publishing, 2025. Accessed: Jun. 19, 2025. [Online]. Available: http://www.ncbi.nlm.nih.gov/books/NBK557827/

[5]

John Hopkins, “Granulomatosis with Polyangiitis (GPA).” Accessed: Aug. 24, 2025. [Online]. Available: https://www.hopkinsvasculitis.org/types-vasculitis/granulomatosis-with-polyangiitis/

[6]

R. Chetty and S. Serra, “A pragmatic approach to vasculitis in the gastrointestinal tract,” Journal of clinical pathology, vol. 70, no. 6, pp. 470–475, Jun. 2017, Accessed: Oct. 05, 2024. [Online]. Available: https://jcp.bmj.com/lookup/doi/10.1136/jclinpath-2016-204308

[7]

N. Ledó and Á. G. Pethő, “Gastrointestinal symptoms as first remarkable signs of ANCA-associated granulomatosis with polyangiitis: A case report and reviews,” Bmc gastroenterology, vol. 21, no. 1, p. 158, Dec. 2021, Accessed: Oct. 05, 2024. [Online]. Available: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/s12876-021-01730-8

[8]

M. COJOCARU, I. M. COJOCARU, I. SILOSI, and C. D. VRABIE, “Gastrointestinal Manifestations in Systemic Autoimmune Diseases,” Mæ dica, vol. 6, no. 1, pp. 45–51, Jan. 2011, Accessed: Aug. 26, 2025. [Online]. Available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150032/

[9]

E. Morales et al., “Recommendations for the diagnosis and treatment of anti-neutrophil cytoplasmic autoantibody associated vasculitis,” Nefrología (english edition), vol. 45, no. 1, pp. 15–58, Jan. 2025, Accessed: Aug. 15, 2025. [Online]. Available: https://www.sciencedirect.com/science/article/pii/S201325142500001X

[10]

P. C. Grayson et al., “New Features of Disease after Diagnosis in Six Forms of Systemic Vasculitis,” The journal of rheumatology, vol. 40, no. 11, pp. 1905–1912, Nov. 2013, Accessed: Aug. 15, 2025. [Online]. Available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4292850/

[11]

W. Li, H. Huang, M. Cai, T. Yuan, and Y. Sheng, “Antineutrophil Cytoplasmic Antibody-Associated Vasculitis Update: Genetic Pathogenesis,” Frontiers in immunology, vol. 12, p. 624848, Mar. 2021, Accessed: Aug. 24, 2025. [Online]. Available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8032971/

[12]

J. Scott, J. Hartnett, D. Mockler, and M. A. Little, “Environmental risk factors associated with ANCA associated vasculitis: A systematic mapping review,” Autoimmunity reviews, vol. 19, no. 11, p. 102660, Nov. 2020, doi: 10.1016/j.autrev.2020.102660.

Disclaimer: This is not medical advice. This content is intended for non-commercial informational purposes only. Do not use it as a substitute for advice from a trained health professional.

I use this: Leg Disability edition

sungo@sungo.io (sungo) — Fri, 05 Apr 2024 15:34:00 -0400

For context, I’m generally hypermobile and meet the hEDS criteria (no formal diagnosis yet because HMO but maybe this year). My legs are the worst and these days I need support to walk around, particularly if I’m leaving the house. So, here’s what’s keeping me moving. (CW: some amazon links here, but no affiliate or tracking codes)

posture cane - there are other vendors but this is the only one I know of on amazon that has fun colors. this came out of shark tank (I think?) as a “seen on tv” kind of deal and is just now making it elsewhere. this will not work for everyone but is great for me with balance and support and standing up. I use the included self-standing tip at home and it is brilliant.
ergocap high performance cane tip - this adds better cushioning and rotation. it’s slip resistant and shock absorbing. the ultralite is the same but lighter and smaller and also very good. I use this when out and about.
LED clip light for canes - 100 lumen is brighter than you think. I keep mine clipped all the way at the bottom, with a little tape to make sure it doesn’t move around much.
self-fusing grip tape for the cane handle - which tape to use is a matter of personal preference, particularly if you are sensitive to texture. but the tape helps me keep ahold of the cane and its self-fusing nature means there’s no adhesive crap all over the handle if I need to remove or swap out the tape
reflective stickers that I bought some place random. I don’t walk much outside these days but I find the stickers help folks notice the cane
neenca knee support - this is a compression sleeve with patella support and flexible side braces. the side braces help me keep from hyperextending my knee and remind me of the “right” way to stand on my knee. also, it’s good for reminding me to take it slower
hand-free shoes - these have been amazing for me. built-in orthotic support, extra arch support doodads, hands-free, the extra cushioning helps keep me from rolling my ankles.

I think that’s the list for right now. It’s not going to work for everyone and I’ve built it over time. My worst days are getting worse as they tend to so I’m sure I’ll add to the list eventually.

Disclaimer: This is not medical advice. This content is intended for non-commercial informational purposes only. Do not use it as a substitute for advice from a trained health professional.

I Don't Want To Go On The Cart

sungo@sungo.io (sungo) — Sat, 19 Apr 2008 00:00:00 -0400

I’m not dead yet!

I’m alive and, all things considered, I’m doing pretty well. On Friday, we arrived at the hospital on time, put me in a paper gown, shaved my belly, and removed my gallbladder. (A personal note to hospital staff: if you would let patients know about the need to shave in advance, we can take care of these things ourselves, in ways less likely to cause painful ingrown hairs.) The surgery went very well and the doctor says all of my insides look nice and healthy (except for my now missing gallbladder). As promised, photos of my gallbladder and wounds are up on Flickr

I spent Friday and most of today, Saturday, under my parents’ watch and care. They took excellent care of me. Now, I’m back in my own home in my nice new recliner with my favorite fleece blanket. My parents are awesome and are the best but it really is nice to be home again.

One sad note for all of this though. My paternal grandmother, my last remaining grand relative, died Wednesday night. My parents are flying out tomorrow morning to spend the week in California with family. Unfortunately, I will not be able to join them thanks to my surgery. Please send all the good thoughts and energies you can to my dad and his brother this week. The funeral is on Wednesday.

Anywho, I’m still alive. You all aren’t that lucky yet :)

Disclaimer: This is not medical advice. This content is intended for non-commercial informational purposes only. Do not use it as a substitute for advice from a trained health professional.

Robots In My Belly

sungo@sungo.io (sungo) — Wed, 16 Apr 2008 00:00:00 -0400

I’ll be the first to admit it: I’m a giant geek. I tried once to set my geekdom aside and that ended very badly. I need to get a tattoo or something to permanently identify myself as a geek so I’ll remember not to deny who I truly am. Richard Stevens, the mad genius behind Diesel Sweeties, once twittered: “show me a problem that can’t be solved by technology and I’ll show you a problem I don’t care about.” This is one of my favorite quotes ever and it really summarizes my thoughts on the universe. Like I said, I’m a massive geek and also a somewhat budding technologist.

Unfortunately, I suffer from some physical and mental issues that technology can’t solve yet. I’m bipolar and I suffer from various gastrointestinal drama that you really don’t want any details on. Often I find myself frustrated that there is no real solution to these issues apart from whatever new medication the pharmacy rep brought in today. In the last few weeks, though, I’ve been facing a new issue, one which can be solved with technology.

Three weeks ago, for the first time in my life, I voluntarily walked into the Emergency Room at the local hospital. My abdomen was hurting in ways I’d never experienced before. The pain was almost unbearable and, despite my generally high pain tolerance, I was having a hard time coping. They drew blood and ran tests and took x-rays and other medical magic. After a few hours, they sent me home with some anti-cramping meds and an official diagnosis of “shrug“. I wasn’t dying but they couldn’t find a cause.

Since then, I’ve gotten a new gastroenterologist, had new tests done, been radioactive for a few days, and continued to live with some pretty nasty pain. We’ve identified a problem though and Friday morning, technology will hopefully solve that problem. At 07:30 EDT, my doctor will make four incisions in my abdomen, insert three robot arms and one camera, and remove my gallbladder. That particular organ of mine is operating at 21% efficiency due to a valve failure in the bile duct. It’s inflamed and causing all this recent drama.

There are a few technological fun bits here. First, robot arms! Laparoscopic surgery is pretty neat and I approve of any surgery involving remote control robots. Second, I have an awesome doctor. He signed off on taking pictures during the surgery. Now, I’d love to have someone in the room, filming the whole thing and liveblogging or twittering every step. Unfortunately, due to hospital regulations, I have to settle for photographs taken by the staff which normally would be used to protect against malpractice lawsuits. I pressed for a full video but apparently they only roll video cameras when something goes wrong during the procedure.

On Friday morning, I plan to twitter my entrance to the operating theatre. After that, I’ll be out of the universe for a few hours. In theory, I’ll leave the hospital around 10:00 EDT and head over to my parent’s house where they can make sure I don’t immediately die. When I’m conscious enough, I’ll twitter my survival. I don’t know when I’ll have the official photos from the doctor. I’m going to take a flash drive with me just in case though. I might be able to convince my parents to take some photos of me going in and coming out too. We’ll see. When all the photos have been gathered, I’ll drop them in Flickr and drop a post for everyone to see.

In case my emotions aren’t making it through the ether, I’m really excited and I’m looking forward to this surgery. Even if I have one of those horror story type recoveries, if this surgery accomplishes even half of what we think it will, I will be a very happy boy and will feel much better going forward. However, if you are so inclined, keep your fingers and flippers crossed for me on Friday morning

Disclaimer: This is not medical advice. This content is intended for non-commercial informational purposes only. Do not use it as a substitute for advice from a trained health professional.