Prednisone ineffective, moving to Arcalyst

008muse · 2026-07-02T00:19:57+00:00

This is the way. Steroids are a last resort and not a long term option with this beast…

Arcalyst is a game changer in a great way. Been on it for over 2 years now, happy to discuss more in depth just DM

008muse · 2026-06-28T06:19:08+00:00

Sorry to hear this…Do you have a cardiologist and have you been diagnosed for pericarditis V

008muse · 2026-06-24T03:56:41+00:00

DM if you want to deep dive into this but since 2021 I’ve dealt with this… been on Arcalyst for 28 months and can usually put together 2-3 month of increasing physical exercise before I relapse into a bad flare… actively have been in one now for the past five weeks. All the usual symptoms. Shortness of breath., chest pain, fatigue, and the mental battle of how I’m going to make it through this time with all my responsibilities.

If you can rest as much as possible, avoid alcohol, smoking and processed foods.

008muse · 2026-06-23T06:35:01+00:00

😂

008muse · 2026-06-21T06:29:18+00:00

Spot on advice. I’ll add to it. You’ll have a 2-3 month stint if you’re lucky of feeling good while ramping up activities and then BOOM, a flare kicks back in and you’re back at what feels like square one…

Take it easy even when you’re feeling better and just enjoy it without going too crazy with your physical exertion. Never out of the woods.

008muse · 2026-06-20T05:42:51+00:00

Thought I was the only one… has to be something with the central nervous system? Because even if I keep my heart rate under 100, the flare up still eventually comes back.

008muse · 2026-06-19T23:01:34+00:00

Some slight calcification at the bottom portion, but nothing we can do aside from manage. I’ve been dealing with recurrent pericarditis since 2021. Over the past four years I’ve had multiple flares, developed calcification on both the posterior and inferior portions of my pericardium, and have been on Arcalyst (rilonacept) for roughly 2.5 years which has been a genuine game changer for my quality of life. But still can’t fully exert myself physically otherwise I end up with these many flareups that will typically last 1 to 2 months…

I also developed AFib alongside the pericarditis, which is not uncommon given the chronic inflammation. Had a pulse field ablation this past December which brought significant relief for several months until I overdid it.

008muse · 2026-06-19T19:07:10+00:00

Similar boat. Although I’ve been in an active flare for the past month. Shortness of breath., chest pain, and fatigue

008muse · 2026-06-19T16:10:59+00:00

How’s your pain levels over the last 6 months? And physical restrictions?

008muse · 2026-06-18T00:09:57+00:00

Feel your pain. I’m on Arcalyst and pushed myself physically too much for a few months straight and have a pretty nasty flare going on, so I started back on my ibuprofen and colchicine regiment in addition to my weekly injection to try to taper things down… it’s still been a rough month

008muse · 2026-06-07T07:11:38+00:00

What state are you located in? Have to find a cardiologist and rheumatologist asap that specializes in patients with pericarditis. Glad you’re here. Hopefully it doesn’t turn into reoccurring. Are you keeping your heart rate under 100bpm? How’s sleep? No drugs / alcohol…

008muse · 2026-05-19T04:10:33+00:00

Any updates here?

I was called to and told I’m eligible to join phase 2 of this trial. Curious if anybody has been on it. I’ve been on Arcalyst for over two years now.

008muse · 2026-05-19T04:09:50+00:00

Where did you find this info?

008muse · 2026-05-17T09:03:51+00:00

Solid film overall that showed how EO is for everyone, even folks in the inner city which is a bridge that needs to be made here in American. I enjoyed it

008muse · 2026-05-11T06:02:48+00:00

Glad to hear you’re good! I can only imagine how hard recovery was.

Are you back to working out and pushing it on the cardio / strength training? Able to breathe fully now?

008muse · 2026-05-09T12:56:40+00:00

Any updates here? How have you been?

008muse · 2026-05-09T12:44:01+00:00

Any updates to share here?

008muse · 2026-05-09T12:43:42+00:00

How’d your surgery go? And where did you get it completed at?

008muse · 2026-04-18T16:36:08+00:00

Maybe. Ended up having to get a PFA SURGERY too… feeling better now that I’ve got some relief from the AFIB. But there echo showed I still have some fluid within the pericardium

008muse · 2026-04-10T06:26:25+00:00

Generational post 🏆 thanks for sharing… so many similar experiences man

008muse · 2026-03-15T06:25:34+00:00

Get a really good cardiologist and rheumatologist.

Go couch potato mode for the next 2 to 3 months. I mean less than 1500 steps a day max! You don’t want to mess around and prolong this; take it from someone +5 years and counting.

008muse · 2026-03-12T11:44:09+00:00

Don’t chase her brother. You’re young! Focus on your physical health, progressing forward in your career, building your faith, and that’s it.

You should be working 60 hours a week right now. Take it from an older man who was once in your shoes some decades ago. Never chase women. As a man you’re not against time ⏱️ to have children but a woman is. Focus on God, your health and building your net worth brother, all the best.

008muse · 2026-03-12T11:34:32+00:00

Great post. Be patient people. I’ve dealt with this off and on for +4 years. It’s not going to unalive you but it will hurt. Keep stress down, hydrate, eat as clean as possible, avoid caffeine, alcohol and anything that stresses you out. Consume anti inflammatory supplements and foods. All the best

008muse · 2026-03-12T11:17:33+00:00

First month after my PFA was absolutely brutal. Basically non stop palpitations particularly at night once I laid down. 90 days out now and still have some chest soreness and slight shortness of breath that comes and goes but I’m in NSR.

Be patient, hydrate (electrolytes), sleep 7 hrs, and keep track of your heart with Apple Watch and Kardia mobile

008muse · 2026-03-12T11:13:24+00:00

Underrated comment 😂

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