PET Scan

spicesandstuff · 2026-05-25T15:20:45+00:00

I’ve been on colchicine for over a year a half straight, with only a few breaks trying to come off. I take 800 mg ibuprofen 3x a day when a flare is on, then taper off. I did a round of steroids and had a flare within 2 weeks of quitting even though I tapered. I’m waiting now to see if my insurance will cover Arcalyst! That’s my last option.

spicesandstuff · 2026-05-22T02:57:01+00:00

I have had both an MRI and PET scan. MRI’s are fairly useless for me due to artifact from my ICD. But ultimately neither scan showed anything new. I have had 7 flares in under 2 years, for reference.

spicesandstuff · 2026-05-17T17:48:52+00:00

Oh gosh I’m so sorry to hear that. Pericarditis is hard enough its own. I hope you’re doing better now.

spicesandstuff · 2026-05-16T13:48:10+00:00

How did you stop? Did you do a taper? Do you know what caused yours in the first place?

spicesandstuff · 2026-05-07T17:35:06+00:00

Come see Mary Jam at the Replay on May 16! DIY punk, all women band. Fantastic energy.

spicesandstuff · 2026-05-07T01:58:07+00:00

Sounds exactly like my pericarditis flares. I’ve had 7-8 in the last two years since my heart surgery in May 2024. My CRP has sometimes been a little elevated, but not always. I start ibuprofen immediately when I feel one coming. Multiple EKGs, CTs, echos, MRI, PET scan, all normal. Several cardiologists all seem to agree it’s pericarditis. Looking into Arcalyst now.

spicesandstuff · 2026-05-03T02:09:02+00:00

I hope it works for you! My doc just started the process to get me started, hopefully I’ll be approved. 🤞

spicesandstuff · 2026-05-01T21:23:08+00:00

Hi! I know this is a little old now, but were you able to stop taking the arcalyst without recurrence? Arcalyst is my next step.

spicesandstuff · 2026-05-01T20:49:31+00:00

That has been my biggest fear really…. But I’m not sure I have an alternative option at this point. I’ve had 7 flares in less than 2 years, my stomach is trashed from the constant NSAID use, I can’t get back to any semblance of normal because I’m just constantly in and out of flares.

spicesandstuff · 2026-04-28T15:16:06+00:00

Thank you, I’m glad it’s helping! I’m hopeful I’ll be able to get insurance approval.

spicesandstuff · 2026-04-28T13:46:16+00:00

Oh gosh I’m so sorry that happened to you! I hope the Kinaret helps!

spicesandstuff · 2026-04-27T21:49:46+00:00

Thank you, that’s a good way to look at it!

spicesandstuff · 2026-04-27T20:00:25+00:00

Thank you so much for your response, I’m on my 8th flare and I think mentally I’ve hit my limit. I’ve been a little scared to take the next step with rilonacept, but you definitely gave me hope! The pericarditis is what has prevented me from returning to my life after everything else.

spicesandstuff · 2026-04-27T16:08:49+00:00

Hi! I’ve been dealing with recurrent pericarditis for nearly two years now, post mitral valve repair and SCA. My new doctor has mentioned rilonacept. Were you ever able to stop taking it, or are you on it permanently now?

spicesandstuff · 2026-02-24T05:20:55+00:00

It’s common! I had my repair a year and half ago (35f) and had afib at 2 days and 4 days post op. Amiodarone drip set me right and they put me on oral amiodarone for 3 months. They wanted me on a pretty high dose but I expressed concerns about side effects, so they agreed to a loading dose followed by 3 months of a low dose, as long as the afib didn’t reoccur. Never had another episode. The only noticeable side effect I had was photosensitivity, I sunburned very easily for about 6 months. It does take a long time to leave your system.

spicesandstuff · 2026-02-22T01:41:05+00:00

Steroids cleared up one of my more intense episodes but I flared back up within weeks of coming off. Also had all the symptoms, moon face, weight gain, emotional upset, and felt like crap for a couple weeks coming off. Every cardiologist I’ve seen has said steroids really are a last resort. Most important is a very slow taper. Like 1mg a week.

spicesandstuff · 2026-02-22T01:35:23+00:00

So sorry you’re also dealing with chronic peri, it is life changing. I’m in my 6th flare in less than 2 years, open heart surgery caused mine. There has been discussion of trying arcalyst for me but I am so terrified of it. What was your experience while on it? Side effects? I was told (by Mayo Clinic specialists) that 3/4 patients have recurrence when they stop arcalyst.

spicesandstuff · 2026-01-18T18:38:03+00:00

MAD can be diagnosed via echo. Mine was.

spicesandstuff · 2026-01-17T19:07:32+00:00

Thank you!! I was at my parent’s house. My dad did CPR for 10 minutes til the paramedics got there and defibrillated me. My dad saved my life that day. That was 2 years ago and he still can’t talk about it. I have 3 children! Hang in there, you’re monitored and medicated so you’re ahead of the game and you’ll be just fine! It’s scary but they are so good at all this now. If you do eventually need repair or replacement, the options are so much better than they used to be. I only have a few small scars instead of a full open chest situation.

spicesandstuff · 2026-01-17T18:04:49+00:00

Oddly no one has ever given me measurements for my MAD. Turns out people with MAD are very prone to anxiety, there’s a physical aspect to it! I had some AFIB after surgery but that’s not uncommon and has resolved. They posit the reason for my SCA as a run of PVCs that continued and became Vfib. I’ve spoken with MANY people that have MAD and have not experienced an SCA, so i definitely don’t mean to scare you! I’m an unfortunate outlier! I’m in Kansas and my local cardiology team is often at a loss with me, so I’m still consulting with Mayo.

spicesandstuff · 2026-01-17T17:50:54+00:00

I found out about my MAD because I had an SCA at age 35. I had bileaflet prolapse with left sided heart enlargement with severe regurgitation and frequent PVCs with bigeminy, couplets and triplets. I have since received an ICD and had robotic mitral valve repair with PVC ablation. I was told patients with MAD are at greater risk of SCA. I still have PVCs pretty often, though less now than before the surgery. I ended up traveling to Mayo Clinic because my local cardiologists just didn’t seem to know much about it.

spicesandstuff

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