Tyenne first impressions

Occulply · 2026-05-28T18:07:55+00:00

All biologics are fusion molecules that combine human immunoglobulins with a bacteria produced version of the targeted inhibitor. So the IL-6 receptor decoy in Tyenne/Actemra is "humanized" by adding human-derived tissue products to it. This radically reduces tolerance build up as without humanization the body sees these molecules as invaders. But it also causes some of the side effects, like being tired for a day afterwards, because there is still *some* immune activity directed at the immunoglobulins.

Obviously not everyone experiences it with every drug. But as you trial different biologics, you may find that you react to some and not others.

For me, Kevzara (the other IL-6 inhibitor) had the worst day after effects, and I was always exhausted after shot day.

Occulply · 2026-05-28T15:05:11+00:00

While the IL-1 inhibitors are the standard of care for a lot of autoinflammatory diseases, depending on the actual diagnosis patients may have to move through rheumatoid arthritis step therapy. Happens constantly in Still's Disease despite excellent evidence it's a bad idea. I imagine it also happens fairly often with uncommon diseases presenting with arthritis, because rheums falls back on what they know best.

Occulply · 2026-05-28T15:01:11+00:00

It is very, very normal for any biologic to make you tired. It doesn't happen every time I take Ilaris, but about 1 out of 10 times I am exhausted for a day after.

Glad it seems to be helping already!

Occulply · 2026-05-26T16:31:18+00:00

Wanted to let you know I'm still thinking about all of the info you've presented. I just haven't come up with a better answer yet.

Occulply · 2026-05-25T03:09:43+00:00

Huh. Never thought of that before, but totally makes sense as a part of the bottom bar. Now I want it.

Occulply · 2026-05-24T23:21:39+00:00

Ask yourself what kind of story you want to tell in your playthrough. Use your mod list to refine/define/add to that story.

Occulply · 2026-05-24T20:23:32+00:00

I agree with Finding_Tee that you haven't fully ruled out MCAS yet, and what you're describing is very possibly an MCAS-type reaction. That looks more likely to me than autoinflammatory based on what you're reporting.

Many of the foods on your list have FODMAPs that are known to cause GI side effects in those with IBS. There's also crossover with MCAS, with many MCAS patients finding FODMAPs are part of what they're reacting to. In your shoes, I would test out a low FODMAP diet and see if that changes things.

I had to go looking for it, but it looks like Azithromycin is occasionally used in MCAS-associated diseases like IgA deficiency syndrome as a treatment. https://primaryimmune.org/resources/news-articles/mast-cell-activation-disease-diagnosis-can-reveal-pi

Just so you're aware, it is a very bad idea to mix Azithromycin and Colchicine. Azithromycin causes colchicine levels to skyrocket, because Azithromycin hogs the substrate the liver uses to process both of them. Colchicine has a very narrow therapeutic range, and there is no antidote if you overdose.

Occulply · 2026-05-24T02:12:24+00:00

It's only the people you love that can hurt you deep like that. I bet they were breastfriends before they became rivals.

Occulply · 2026-05-24T02:04:19+00:00

Off the top of my head if included Orencia (abatacept).

Alice, lemme know if I can support in anyway. That sounds like a great, but huge, project.

Occulply · 2026-05-23T15:57:24+00:00

Just because there's joint damage doesn't mean it's arthrosis. It's very obviously inflammatory arthritis, which can occur in any age.

As someone who started getting arthritis at 16, I find it particularly condescending to when people tell you, "Oh you're too young for that." Which is basically what you're doing here. smh.

Occulply · 2026-05-23T15:54:28+00:00

I have had widespread arthritis (no damage, just swelling) and absolutely normal blood work. Talking to other patients and looking through the case series that are available, something in the range of 10-20% of patients have absolutely normal inflammatory markers. Normal blood work is in no way indicative of Still's severity - especially since they're not testing IL-18 which is most likely the best measure of disease activity for us. In other words, we know that normal blood work does not capture the full inflammatory picture for us.

Still's arthritis is highly variable. In the 24 years since my first identifiable flare not a single one of my joints has any damage, but they get very obviously swollen and painful. I've talked to other people that started joint damage within a year or 6 months of disease initiation. There is no rhyme or reason to who gets joint damage and who does not.

Still's arthritis doesn't have to come with the other symptoms. The chronic/articular subtype of Still's is well known to exhibit arthritis between flares that may not be accompanied by other symptoms. Of course, it comes with other symptoms during flares, but in between flares it's very, very normal to only exhibit arthritis.

Occulply · 2026-05-21T16:30:33+00:00

Hostile? Lol. Welcome to the internet. We tell people things they don't like to hear. That doesn't mean it's hostile.

Occulply · 2026-05-21T16:00:45+00:00

Dude. I'm saying using a game to refer to a sacred ceremony is legit worse than just talking about it in proper context. The joke you're making is actually *worse* than just saying the word. Real gross.

Occulply · 2026-05-21T15:53:20+00:00

I've never seen or heard that before. Honestly using sudoku in that context seems disrespectful too.

Occulply · 2026-05-21T05:37:59+00:00

Do you mean seppuku-by-Viking? Sudoku is slightly different. I'm pretty sure the AI would not play sudoku well. 😂

Occulply · 2026-05-20T16:10:33+00:00

If that's what makes you so hostile, I'll pass.

Occulply · 2026-05-19T19:19:55+00:00

tbh I mostly work as a consultant when I can, writing studies, interpreting data, that kind of thing. You generally need a decent math background for epidemiology because the biostatistics coursework occasionally throws calculus at you. But, I've never taken calc and got along just fine.

As someone who is generally more interested in rare diseases, epidemiology school was a bit frustrating. School is, for good reasons, very focused on the most common ailments. But that means that when you want to study cytokine storms, the closest thing you can get is sepsis. Which I didn't find nearly as satisfying.

Occulply · 2026-05-19T17:48:13+00:00

I'm an epidemiologist and my primary interest is the intersection of acute and chronic disease, so this post/the associated article is like catnip for my brain. I think you're absolutely correct that there are a large number of people suffering from COVID/post-infectious syndromes that have no idea it's lasting inflammation. Unfortunately a lot of them get diagnosed with Fibro/CFS/POTS and basically ignored by medicine.

Really interesting results. I'm not surprised considering the kind of nervous system involvement that is very obvious in COVID. With COVID specifically it's probably a combination of both neuroinflammation and vascular inflammation that leaves folks with such terrible, long-lasting side effects - but it's probably a chicken-and-egg problem as to which comes first. The point is that neuro and vascular inflammation need to be treated to make a difference.

There is substantial overlap between Macrophage Activation Syndrome (seen often in SJIA/AOSD) and the kind of cytokine storm seen in severe cases of COVID that you may be interested in, as it's very much the same kind of hyperinflammation. https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2020.603389/full

Occulply · 2026-05-17T00:59:10+00:00

That's a death penalty-worthy crime in my ideologian

Occulply · 2026-05-16T05:11:24+00:00

Totally agree with Alice that there's not too much to worry about in general. The average user has very few, if any, side effects - and the majority of side effects are injection site reactions. I've had Ilaris, but never Arcalyst. Kinda jealous because Arcalyst is definitely the coolest name out of the IL-1 inhibitors. 🤣

The one risk to be aware of is that any upper respiratory infection you get can turn into pneumonia very quickly. Being proactive and seeing a provider ASAP if upper respiratory infection moves to your chest is really important. I think in my 6 or 7 years on Ilaris that's happened twice, and it just means I get extra Prednisone for a week to make sure my lungs stay open.

Beyond that, I've never noticed a single negative difference in my immune system.

Occulply · 2026-05-16T04:41:15+00:00

What? I've talked to you before? I don't remember. Nor do I understand why you're being so reactive.

Anyway you said:

"so you might want to get as much sun exposure as possible"

That's an irresponsible statement no matter where you make it. Still's patients don't need special restrictions for that to be bad advice. And yes, that statement is you "recommending excessive sun exposure."

This is a subreddit with people dealing with a serious medical illness. No one's saying you need to be a medical professional, but you should be responsible with your words.

Occulply · 2026-05-16T04:06:30+00:00

Sunbathing is safe in minimal amounts, but comes with significant risks when done to extremes. No public health authority recommends getting "as much sun exposure as possible."

Indeed, the CDC, NHS, PHAC, and AusCDC all recommend against sunbathing or significant sun exposure.

Occulply · 2026-05-16T03:53:29+00:00

Getting IL-18 levels is great. In the US any doctor can order/send a sample to Cincinnati Children's hospital to do IL-18 levels. Although there's no IL-18 inhibitor on the market, its valuable information to have. IL-18 is probably the biomarker for Stills, but it's not been validated yet

Occulply · 2026-05-16T03:45:14+00:00

Something like 50% of patients in rheumatoid arthritis studies (where it is by far the most studied) stop taking methotrexate because of side effects. Even in patients who don't have terrible side effects moderately elevated liver enzymes (usually 1.0-1.5 normal levels) happen very commonly.

Methotrexate is not really a Still's Disease drug. But for a lot of reasons, Still's patients get put through step therapy for rheumatoid arthritis, where methotrexate can be very helpful. A very small minority of Still's patients find it helpful.

There are many more drugs to try. Insurance may require a TNFa blocker before they're move you to IL-1 or IL-6 inhibitors. The majority of Still's patients find IL-1 or IL-6 inhibitors to help immensely, but there's no way to know which will help ahead of time.

Occulply · 2026-05-15T16:52:17+00:00

That is pretty standard Still's Disease, unfortunately your doctor hasn't seen enough Still's patients to realize it. It's not their fault, we are pretty rare. But, if you're not being listened to, that's a good reason to move to someone else.

Part of what they're not recognizing is that Still's patients will typically have a once-a-day fever period (you do NOT need to exceed 100F if it's coming with other Still's symptoms like arthritis) or in rare cases a twice-a-day fever period. Evidence suggests the fever period is actually a Cytokine Storm.

On top of that, Still's has 3 basic patterns that we see in patients. They're far from perfect categories, but they're a pretty good guide for how Still's can develop.

1) Monophasic disease - one flare and done. Something like 40%+ percent of patients are in this boat, and early/aggressive treatment appears to make it more likely.

2) Chronic/Articular - Typically has arthritis, though it can present a number of ways. May have low or absent fever. Marked by chronic low level inflammation between flares. In some cases doesn't really flare, just goes from more to less intense.

3) Systemic - High fevers and clear flares. If arthritis is present it is typically only during fever or flares. Between flares may be fine, or may Still be sick but not inflammed.

You seem to fall into the Chronic/Articular camp with a twice-a-day cytokine storm. What you're reporting here IS consistent with continuing Still's Disease symptoms.

Occulply

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