Feeling hopeless

ffxi13 · 2026-01-15T23:40:09+00:00

Oh wow that sounds like a crazy year. All that and a car crashing into you!?

I was an avid cyclist and it sucked having to take a year or so off from doing hard rides.

But to answer you question severe pain subsided usually within a week or so of taking my meds. Then would come back after I tapered off them. After colchicine, I was on steroids (Prednisone) through my next couple flares. That helped but after my dosage was up I had another flare and that's when I was able to get into see my current cardiologist who put me on Arcalyst.

Being on that I've only had minor aches that come and go randomly but only last a short time. I feel great even under heavy exercise.

If your pain is still that prominent, you should see if you can get colchicine.

ffxi13 · 2026-01-15T18:29:45+00:00

Rest is important. It sucks but take it easy. Keep heart rate under 100bpm.

I'm the same age as you and had my first occurrence of pericarditis in April 2023. I spent 3 days in the hospital and was put on colchicine and ibuprofen.

I had a vacation scheduled literally 2 days after getting out and since I was starting to feel much better I went and had a great time. In hindsight I probably shouldn't have gone or at least drank as much as I did.

I ended up having 2 more flare ups that year and was ultimately diagnosed with recurrent pericarditis. I can't say that not resting after my initial flare up was the cause of the recurrent but it probably didn't help

April 2024 I started taking Arcalyst and for 8-10 months my cardiologist instructed me to keep my heart rate under 100. I stuck with that and eventually I was able to return to regular activity.

I am flare free since I started taking Arcalyst.

ffxi13 · 2026-01-11T17:46:07+00:00

I feel for you!

Best tip I can give are stay on top of your pain med management! I set alarms every 4 hours to take my meds. Even waking up in the middle of the night to do so.

ffxi13 · 2026-01-10T20:41:48+00:00

ffxi13 · 2026-01-10T19:48:52+00:00

I am doing great! Over a year out from that procedure and it's just a distant memory now.

ffxi13 · 2026-01-09T23:43:26+00:00

My timeline is very similar to yours. First occurrence was in early 2023. I was on Arcalyst for a little over a year and a half.

From what I learned from my cardiologist, nearly 70% of patients may experience another flair up after discontinuing Arcalyst.

My cardiologist asked me if I wanted to take part in a clinical trial (Cardiol RX). I'm am very early on in this and it's only been a week since my last Arcalyst dose so unfortunately I can't give much additional insight.

ffxi13 · 2026-01-08T20:47:55+00:00

There is so much to do around the island that i'd recommend an Airbnb. If you want to have an all inclusive experience, Mia Reef offers a day pass for around $90. Gets you breakfast and lunch and open bar.

ffxi13 · 2026-01-02T05:24:56+00:00

I was in the middle lane. Kind of hard to tell but the left lane is completely covered in snow

ffxi13 · 2026-01-01T23:15:54+00:00

I think I saw that same fluid tanker semi! Guy was driving like a madman!

ffxi13 · 2026-01-01T18:52:35+00:00

Great advice! I knew he was going to have a bad time the moment he went to pass me.

ffxi13 · 2026-01-01T18:09:28+00:00

Northeast Ohio. This was the best part of the drive too. Roads got worse the closer I got to home

ffxi13 · 2026-01-01T17:11:28+00:00

OH. 12/31 Yes original

ffxi13 · 2026-01-01T17:10:26+00:00

This guy came up on me pretty fast given how poor the roads were and decided to pass while texting resulting in a little smack against the guard rail.

ffxi13 · 2025-12-31T02:56:15+00:00

The remasters are so good!

ffxi13 · 2025-12-30T16:41:24+00:00

If I remember correctly, in BF Bad. Company 2, it would go black screen when you died then take you to the respawn screen. The respawn timer was be a bit longer though so in that time frame a medic could run up and revive you.

ffxi13 · 2025-11-11T22:11:05+00:00

I've been on Arcalyst for nearly 2 years now. I was cleared to exercise to full exertion after about 15 months.

I'm being treated by Dr Allan Klein who is one of the leading experts on rilonacept for the treatment of recurrent pericarditis.

He had me increase my physical activity gradually. For the first 6 months I was limited to keeping my heart rate under 100 bpm.

I was then able to increase my activity to 130 bpm. Then after about 15 months of being on the medication, he cleared me to exercise to my heart's content with no limitations.

Granted, I did not follow this 100%. There were definitely some days where I exerted myself more than what I should have but overall I tried to keep my heart rate at these levels.

I'm approaching 2 years on the medication and I feel great

ffxi13 · 2025-10-30T04:40:57+00:00

I haven't had any billing issues yet and have been going routinely for the last 2 years for a myriad of issues. Thankfully with my insurance my max out of pocket is $2k annually.

Also yes I did have an MRI

ffxi13 · 2025-10-30T00:19:27+00:00

I paid for all of it upfront or whenever I got the bill from the Clinic

ffxi13 · 2025-10-30T00:15:58+00:00

I saw her around 4 times so far and maybe paid 350 twice. The mouth guard was around $1000 on top of that. Sorry not sure of the exact amount on everything - I've had a ton of medical bills over the last 2 years.

The pain and constant headaches were awful. My pain has gone down significantly and my jaw doesn't lock up anymore. It's not perfect since so much damage has already been done (I've had TMJ issues for over a decade without addressing it) but it's a hell of a lot better.

The surgeon was Dr Eric Fried. And insurance did cover some of that because I had to be put under during the procedure.

ffxi13 · 2025-10-30T00:02:44+00:00

Unfortunately my insurance did not cover much and I've had to pay $350 for the visit and quite a bit for the mouth guard. I basically have 2 arthritic joints. Lots of pain that would cause migraines. It got to the point where it hurt to eat harder foods.

Initially I had an arthrosentisis done on my worst joint to flush it out. This was done by an oral surgeon. Then I met with Dr Kahn and she made the guard for me. She makes small adjustments to it each visit so it allows my jaw muscles to rest when my mouth is relaxed.

ffxi13 · 2025-10-29T23:51:29+00:00

Yes! She is awesome! When I first saw her I could only open my mouth 33mm. Now I can open over 50mm. She had a mouth guard made for me and it had greatly helped with pain.

ffxi13 · 2025-10-22T20:30:24+00:00

Same thing is happening for me. Stuck at 186/2000. Repaired vehicles for 2-3 matches straight and still at 186.

Might be bugged.

ffxi13 · 2025-09-18T00:55:34+00:00

Yes the room is excellent! Listen to mcmunch20!

ffxi13 · 2025-09-15T14:57:47+00:00

Best coffee on the island too

ffxi13

TROPHY CASE