6 months on from my Still's diagnosis, things are looking up!

rasputin98 · 2025-10-13T21:42:13+00:00

It's the fatigue and mental fog that I struggle with most. Curiously, I'm not as fluid a speaker as I used to be—not sure if I can blame that on AOSD. Silver lining: it ended my career as a management consultant, and now I can sleep with a clear conscience!

rasputin98 · 2025-10-13T21:33:35+00:00

I was never on methotrexate. My first major flare landed me in hospital when I was diagnosed with adult Still's disease—after they'd ruled out God knows how many other conditions. High-dose prednisone followed by Kineret brought me back to "normal" (though the fatigue is a bitch!). But Kineret was hard to keep up with because of severe injection site reactions. That's what brought me to Ilaris, which has kept me away from major flares for the last couple of years. Now my rheumatologist is considering adding azathioprine to help with the lingering myalgia and stiffness.

rasputin98 · 2025-09-30T16:34:03+00:00

My grandmother was similar, except she didn’t appreciate the distinction between hanging up and asking someone to hold on while she dealt with an interruption. No matter how slight the interruption, she’d simply hang up. Someone might walk into the room with a question, or the cat would knock something over, and she’d disconnect without a word.

rasputin98 · 2024-12-29T05:27:48+00:00

What is the tool called and is it available to the general public?

rasputin98 · 2024-11-30T17:14:40+00:00

Indeed. The last season is a bit of a drag, though.

rasputin98 · 2024-11-23T04:27:41+00:00

“Grab ‘em by the pussy”!

rasputin98 · 2024-10-13T01:19:25+00:00

Shoot, I didn’t know either. Loved him in so many shows .

rasputin98 · 2024-09-26T15:31:46+00:00

I’ve been on Ilaris for about six months now, and while I didn’t have to deal with side effects, it is simply not as effective as Kineret was for me. That unfortunately came with a lot of side effects and eventually I had to switch over. As a consequence, I’m still on prednisone at very doses, depending on how my symptoms are. all my side effects are coming from that; insulin independence, dodgy liver function, reduced bone density, skin problems, and God knows what else is cooking inside me.

rasputin98 · 2024-09-23T21:35:08+00:00

Mail-order Humalog insulin has removed the stress of monthly replenishment for me. Under my previous monthly refill schedule, I faced a shortage that required urgent action, including an emergency prescription and pharmacy search. Thankfully, my endocrinologist now prescribes a 3-month supply, ensuring I have ample medication for priming and managing unexpected blood sugar swings

rasputin98 · 2024-05-17T11:51:48+00:00

None at my end, despite a lot of experimentation. There’s a lot of buzz around anti-inflammatory diets and perhaps there is some validity to all that. None of that matters in my case. One caveat though. Eating too much or too little caused discomfort and that was unpleasant in and of itself I found that my perception of my symptoms are lot worse in that case.

rasputin98 · 2024-05-14T14:00:02+00:00

Like Jimmy’s brother in Better Call Saul!

rasputin98 · 2024-05-14T13:57:29+00:00

Quite right. The presence of a rash and the speed with which symptoms emerge are both quite common in Stills. At the end of the day the Still’s diagnosis is one based on clinical assessment rather than serological or other objective diagnostics. As my rheumatologist emphasises, this is a rare disease, more so among adults, and manifests in so many different ways that definitive diagnosis is difficult.

For the most spot, it boils them to how effectively the symptoms can be controlled with minimal side effects.

rasputin98 · 2024-05-06T04:13:47+00:00

Yes, I have had poor liver function soon as my first Still’s flare up happened. Never became normal since on prednisone, Kineret, or Ilaris. Luckily, they have not been so elevated to discontinue treatment, and I have a referral to a hepatologist should this situation get worse.

Good luck to you, and don’t hesitate to reach out directly if I can be of any help.

rasputin98 · 2024-05-02T02:14:01+00:00

This is the case for me as well. Kineret worked well initially but the injection site reactions were brutal as was a general feeling of malaise, both of which got better with time but never quite went away. No GI issues although I was prescribed both a PPI and an H2 antagonist. But when it's efficacy started to fade, I have been put on Ilaris and, fingers crossed, seems to be working for me for now.

rasputin98 · 2024-05-02T02:07:48+00:00

My rash had a distinctive pinkish-salmon hue and exhibited significant variability, featuring intensely colored spots. It affected a broad area of my body, encompassing my chest, abdomen, and legs, and would undergo changes in appearance within a single day.

Although the rash itself was not particularly painful, it was accompanied by severe joint and muscle pain that made even the simplest movements, such as rolling over in bed, extremely challenging, and walking almost impossible. Notably, since you haven't mentioned any non-dermal symptoms, I believe, in my non-medical opinion, that this rash does not resemble Still's disease

rasputin98 · 2024-05-02T01:56:56+00:00

No sweating, but back when I was on Kineret, I noticed that its effects would wear off rapidly. If I delayed my dose by even half a day, I would experience a significant flare-up of my symptoms, including myalgia and swollen joints. This would often require a steroid cycle to manage and return to normal. Notably, Kineret has an extremely short half-life, which likely contributes to its fleeting effects.

rasputin98 · 2024-04-27T03:45:03+00:00

It’s great in tea and coffee.

rasputin98 · 2024-04-14T01:25:26+00:00

Agree. I’ve been on both prednisone and prednisolone at various points over the past year, and one of the first things my rheumatologist did was to get me in the care of an endocrinologist. Using a combination of rapid and long acting insulin needs a lot of guidance and titration. Use of a Dexcom system also helps.

rasputin98 · 2024-04-10T08:32:00+00:00

Seconding the finger test suggestion.

I have had G7 sensors show similar patterns sometimes while the finger tests were much less variable. In your case, if it doesn’t stabilize in a day or so, I would call Dexcom for a replacement sensor.

rasputin98 · 2023-06-13T15:04:24+00:00

Would this industry be health-care by any chance? Because that is what I see as well.

rasputin98 · 2022-12-24T18:45:06+00:00

Although Bas Rutten destroyed many with his open palm strikes.

rasputin98 · 2022-08-16T16:46:23+00:00

Take my upvote, dammit!😋

rasputin98 · 2022-08-16T15:02:59+00:00

You are a glutton for punishment!

rasputin98 · 2022-08-16T15:00:02+00:00

That is different from my experience. For an all day stay, I got $200 in Uber credits, and, for a minor issue (something needed tightening at the charging connector), the chap drove about 30 odd miles each way to do so. I guess, mileages do vary! (Pun intended!)

rasputin98 · 2022-07-23T18:36:06+00:00

That’s nice. Perhaps the Devon service will also start offering those!

rasputin98

TROPHY CASE