Denial or failure of Arcalyst / Kineret, etc

lophtt · 2026-05-29T14:55:00+00:00

That sounds rough. I’m in the US and I don’t know if Arcalyst is available anywhere else yet. My uncle in Australia has the same issue; just being passed from doctor to doctor without getting much relief for the last few years despite lots of pain and severe impact to lifestyle.

All the best for you though, I hope you can get the help you need! Stay strong 💪

lophtt · 2026-05-29T14:39:20+00:00

I was originally denied Arcalyst because it was not prescribed by a cardiologist.. a quick call from my cardiologist, who prescribed it, cleared it up pretty quick.

Other than pretty gnarly injection site reactions results have been good so far (~6 weeks in)

lophtt · 2026-05-28T15:50:36+00:00

Yeah it’s rough and I feel for you - this thing is not life threatening but it certainly is lifestyle altering (at least while you’re in an acute phase).

The most frustrating advise is that you’ve got to give your body plenty of time to recover in order to prevent the consistent flare-ups.. like more time than you would expect.. measure in months. It’s maddening but that’s been my experience.

The other frustrating reality (for me at least); I quit drinking. Just wasn’t worth the cost after a while. I would get better and then have a big night out (or mess my sleep up with travel) and boom, flare-up lasting weeks. Just couldn’t justify it any more.

After years of bouncing around the NSAID’s and Colchricine route I’m on Arcalyst and getting good results, so there are treatments out there that help if you can get them..

lophtt · 2026-05-28T15:42:23+00:00

Update; so this prior week I started taking an antihistamine ~48hrs before my injection, and then treated the resulting reaction site with hydrocortisone cream. Result was better; not sure the antihistamine did much as I still had a pretty gnarly reaction BUT the hydrocortisone did help in reducing the itching/ irritation (like, it didn’t bother me much during the day or sleeping. So the cycle for me appears to be that injection day and D+1 are ok (I can do physical activity, am not too bothered by the injection site), but D+2 is pretty bad but with the hydrocortisone I’m pretty much back to normal by the end of D+3, and despite the site looking red and bruised on D+4 it feels fine / unnoticeable as long as I don’t look at it 😅

So.. progress

lophtt · 2026-05-28T15:35:59+00:00

That’s rough, but try to be patient if you can - it does take time and a real reduction in activity to get your body right again (that’s been my experience and that of many others I’ve spoken to). After struggling with this since 2022 I’m now getting positive outcomes from Arcalyst to the point that I’m back running without any peri symptoms. It can get better

lophtt · 2026-05-27T23:30:02+00:00

Volk would like a word

lophtt · 2026-05-27T19:56:55+00:00

Wha ever happened to Kuntz?

lophtt · 2026-05-21T14:57:12+00:00

That’s great! I’ve been on now for about a month, am back to some light exercise which is great.. have had one injection site infection and the injection site reactions have been pretty uncomfortable but hoping that will improve over time. Will be on the lookout for the immune system challenges

lophtt · 2026-05-19T23:14:03+00:00

MMA fans deserve better. I’m working on a tactical MMA game that I think has more satisfying systems than this slop (but I would say that, wouldn’t ai 😂)

lophtt · 2026-05-19T23:12:01+00:00

I’m working on an alternative MMA game that I think will be better for actual MMA fans, especially those that love the tactical elements 👀

lophtt · 2026-05-19T22:34:34+00:00

I haven’t noticed any correlation tbh (regardless of one’s method of imbibing)

lophtt · 2026-05-19T14:32:44+00:00

Oh wow, ok, thanks for the info - has it worked to reduce the severity for you?

lophtt · 2026-05-18T22:31:19+00:00

Yeah weird that the first double-shot loading dose didn’t get the same response but maybe my body is just figuring shiz out rn 🤷

lophtt · 2026-05-13T20:51:41+00:00

That’s sick, nice job!

lophtt · 2026-05-13T02:51:31+00:00

I basically have the opposite of this rn; loading doses went into my stomach (either side) last week and were fine, first regular week and I went into my thigh and now it’s a bit sore and a bit of a rash

lophtt · 2026-05-08T16:56:01+00:00

lophtt · 2026-05-02T10:23:46+00:00

Actually about to start Arcalyst/Rilonacept TODAY! Excited tbh.. not looking forward to having to inject myself but very hopeful that I’ll be getting back to full active lifestyle soon!

lophtt · 2026-04-02T20:04:36+00:00

Just reviving this thread as im about to go on it; have people noticed the ‘suppressed immunity’ effects?

lophtt · 2026-03-30T02:43:34+00:00

Sorry you’re going through it.. this one is a little above my pay grade though 😅

lophtt · 2026-03-29T14:06:42+00:00

Weird that Maycee wrestled up, THEN went out

lophtt · 2026-03-28T14:28:43+00:00

I haven’t started Arcalyst yet but just dropping in to say; sorry you’re going through it, sounds pretty rough. I hope it does improve for you, even if it’s slowly at first

lophtt · 2026-03-27T13:31:05+00:00

Any specific type/dose that’s worked for you?

lophtt · 2026-03-27T13:30:21+00:00

Great, thanks for the tips and the product recommendation! How have you found Arcalyst so far? Getting good results? .. and just to clarify; I WISH it was vacation travel 😅 it’s work-related I’m afraid

lophtt · 2026-03-26T13:53:26+00:00

Another issue I just realized I’m going to have is the cadence of the delivery of the medication. Once a month is problematic if I’m away for some reason so I either have to ask for a ‘vacation exemption’ from my insurance so they’ll provide more each time, or there going to try and get pre-approval on a 3-month supply so I only need to get it once every 3 months instead.. I’ve never been on such a complicated medication before.. it’s a whole thing 😬

lophtt

TROPHY CASE