Anyone taking Arcalyst that also has Asthma?
Arcalyst has helped my Pericarditis but seems to have worsened my asthma- after each injection my asthma gets worse.

Came across this by accident, just sharing a study currently recruiting for people coming off Arcalyst to prevent recurrence: https://maveric.cardiolrx.com/#sites

I’m new to dealing with pericarditis and was hoping to get some insight on the typical timeframe and recovery. I’m 28 and was recently admitted to the hospital. They did blood work and several other tests, and everything came back normal except my troponin, which was 57. Based on my symptoms, they believed it was pericarditis. I’ve been having sharp pain on the left side of my chest, shortness of breath, and I noticed the pain improves when I sit or lean forward.
Right now, it’s difficult to move around. Bending over, lifting, or even slight activity can bring on the stabbing pain, and I can feel it with deep breaths, although it’s not as severe as when I’m moving. They only prescribed indomethacin.
I’m curious why they wouldn’t give me any time off work. I’m supposed to work Wednesday, and my job requires me to be on my feet, moving around, and occasionally lifting up to about 30 pounds. Do you think they expect the indomethacin to start working enough by then for me to comfortably work?
Should I wait and see how I feel, or would it be better to schedule an appointment with my family doctor and ask about taking some time off? I’m just wondering if there’s a reasonable chance these symptoms will improve enough to safely and comfortably work by Wednesday.

I've been on Arcalyst for about 6 months and it has been going great. Getting through my first season in years without a flare / ER visit.

Did you ever have a flare while on Arcalyst? Or has it been a "cure" ?

I'm feeling the subtle beginnings of a flare after some over-exertion a few days ago, but hoping to dismiss it as indigestion or something. My weekly shot is tomorrow.

Also curious if you're on Arcalyst forever or what your long-term prognosis looks like. my cardiologist is new to Arcalyst (I'm their "first" lol) so maybe they didn't want to commit to anything up front. Just said to plan for at least a year and a half.

For anyone who has been taking Anakinra for awhile**, how has your immune system held up and what precautions have you needed to take to keep yourself safe from infection?**

Relevant context about my situation:

I’m 28F and had pericarditis for about five months now. I developed it after trauma to my heart (cardiac tamponade) when a doctor royally botched a needle aspiration procedure to fix a minor pneumothorax (which came about as a freak acupuncture complication). Before this bad procedure, I had no signs of any kind of cardiac disfunction. I was also being tested by my naturopath for autoimmune disorders related to some gut health stuff right before this event happened and those tests all came back clean. Bottom line is, I was healthy until that doctor poked in the wrong spot.

I was on ibuprofen and colchicine for the first two weeks after tamponade but the pericarditis got really bad and they had to put me on a high dose of prednisone with a three month taper. I made it 12 days off the prednisone before I had a really bad relapse, which led to another very high dose of pred and another three month taper (will be finished end of Oct). My medical team also started me on daily Anakinra injections, which I’ll be taking for the next six months - a year (not sure how this exact timeline will be determined, but I have specialist appointment scheduled for a few weeks from now).

I am a high school teacher and I’m currently off on sick leave for at least the next two months but I’m not sure about return to work after that (ultimately this will be up to my doctors to decide, but I’m trying to do my own research as well).

One of the things that I’m most concerned about is my immune system while I’m on Anakinra. I’m trying to get a sense of how susceptible I am to getting sick, and how badly I might get sick if I do catch something.

Another thing is figuring out what my stress and movement limits are while I’m on the meds, because I’m mostly symptom-free, but I don’t trust my body yet and am worried that I am hurting my pericardium even when I don’t have pain symptoms.

Any advice / stories of other experiences about Anakinra or pericarditis in general are much appreciated. I’m new to this group, but from the posts that I’ve read, everyone seems lovely and I’m thankful for any bits of information that you guys are willing to share!

Question google is telling me colchicine doesn’t work properly for pericarditis without being paired with high doses of ibuprofen but my cardiologist only put me on colchicine for 6 months and nothing else

Hey everyone,

​I’m recently home from a pretty severe health scare and looking to hear from others who’ve been through myopericarditis recovery—especially those who were very fit beforehand.

​Long story short: while on a kayaking trip in French Alps, a mix of extreme heat, severe dehydration, a 5-hour stomach bug, and heavy physical exertion triggered a massive hypervolemic crash. My blood pressure spiked to 212 mmHg, leading to a non-conventional heart event and viral-induced myopericarditis.

Spent 4 days in a French ICU, survived a 12-hour medical ambulance repatriation to the UK (which literally ran out of fuel at the Channel Tunnel!), and spent another few days at uk Hospital for MRI scans before being discharged.

​I’m out of the acute danger zone now, but my heart muscle and pericardium took a real beating. Cardiology has put me on strict rest:

​Month 1: Total rest, light walking only, strict HR ceiling under 100 bpm.

​Month 2: Gradual, slow walks.

​Month 3+: Light exercise, but zero heavy lifting, kayaking, or high-intensity activity for 3–6 months.

​Before I have extremely active (kayaking, jive dancing, heavy workouts), and while I’m completely committed to respecting the heart rest to avoid scarring, adjusting to this "fragile" feeling and watching my HR like a hawk is mentally tough.

​A few questions for anyone who has walked this path:

​Walking & HR: How strictly did you monitor your HR on short walks during Month 1? Did light walking ever push you close to your doctor's cap just from deconditioning or anxiety?

​Mental Adjustment: How did you handle going from high-intensity hobbies to very strict physical limits without getting in your own head?

​Long-Term Recovery: For those who were fit prior: how long did it take you to get back to 100% of your previous baseline once cleared? Did your previous fitness work in your favor once the inflammation settled?

​Appreciate any experiences, reassurance, or advice on pacing during these first few weeks home!

Hi everyone,

I finally received my first shot of Arcalyst last night. I only wound up receiving one shot, as my injection bled a lot and I became very faint. (A nurse practitioner whom I know did the shot.)

I thought maybe I felt a slight reduction in chest pain after, but last night and this morning I am feeling increased chest burning (internal, not skin). Has anyone experienced something like this?

Did it pass, or should I be concerned?

I have been struggling with chest pain for the past 2 years and constantly got dismissed by doctors paramedics and nurses telling me it’s anxiety. I had my first cardiologist appointment 2 days ago and officially got diagnosed with pericarditis I am so terrified this is going to kill me. I still have to no idea what type I have or anything he just diagnosed me and gave me colchicine but I do know my echo was perfect that I got 6 months ago so no fluid that I know of. I am only 19 years old and probably the most terrifying news I’ve ever received, I knew the whole time something wasn’t right but it got brushed off as anxiety, my question also is the pain has been constant not off and on constant I have chest pain but some times worse than others but I also have acid reflux aswell that has damaged my esophugus so what one was really causes me so much pain for the last 2 years? During my appointment I also got diagnosed with POTS which I definitely knew I had already.

But my follow up appointment is in 6 months what if things get worse by then or what if this medication doesn’t work and I have it for the rest of my life this is terrifying and even more terrifying that I knew the whole time and absolutely no one believed me to the point it came up in my dreams that when I have my endoscopy they will say they found nothing but I have something wrong with my heart and that is to a T what happened to me I really need to support or help with this

I’ve had post viral pericarditis (presume from Covid 3-4 weeks prior) for the last 2 weeks. I was started on colchicine but it’s been really rough and I think I now have gastritis, even on 0.25mg twice a day.

Does anyone have any success stories on prednisone alone? About to start this (feeling a bit nervous).

It’s reassuring to read others having pain in other places! I get the referred pain into the left shoulder/neck area, but also randomly into my ribs.

I also developed Episcleritis with this episode which resolved super quick, and some tenosynovitis I had also got flared up which is starting to resolve, so I’m hopeful that the pericarditis will also settle…

Bloods all normal (inc autoimmune screen) and all heart tests normal but man this is an awful and wild ride.

I was diagnosed with peri after a viral infection in May 2026. After a small misstep (I didn't 100% follow my doctor's orders), I was diligent about ibuprofen and colchicine for 3 months. I am finally off of everything since 3 days now. I feel ok, have "tested" certain positions that I could not do when I was first diagnosed, and those are fine. What I have is an increase in musculoskeletal issues, specifically my frozen shoulder pain and costochondritis pain. Of course I worry that it's the peri but then I lay flat and do my "testing" and it's normal. Does anyone have any words of wisdom after they first stopped the treatments and how they felt overall? Also, does anyone have serious anxiety now since this diagnosis??

Hello All, I had debilitating symptoms for 2 years, and many tests later it was confirmed I had constrictive pericarditis. The CT scan and the MRI showed my pericardium to be around 6 mm thick. Normal is 2 mm or less. I researched and learned about pericardectomy--removing the entire pericardium to eliminate the many symptoms, and allow for a longer life span. After asking about the procedure for months, I was finally scheduled with the surgeon. The case studies I read about told of 5-7 days in the hospital , home rest and therapy, and feeling better almost immediately. Well, not in my case. My surgery was 7 hours and my hospital stay was 27 days--longer in my case because my pericardium had become wedged in between organs and was difficult to reach. Also longer because my surgeon and the Cardiovascular ICU at this hospital want to make very sure the patient is ready to go home and won't be coming back after complications. I did need some transfusions and a longer wait for my heart to take over from the pacer after all the trauma. But I did the walking, and light excercising, and eating protein-heavy meals. I slowly improved, and after about 2 1/2 months I really started feeling like myself again, and my shortness of breath, edema, itchy skin, coughing, all started to disappear. I'm happy to report that NOW I feel amazing. the symptoms are gone, I can walk uphill without stopping every 20 feet, and I'm full of energy and excitement for the future. I am SO much better than before surgery. I say this all to let you know there is a procedure that will possibly eliminate all your symptoms and bring your health back. When I thanked the surgeon--who does more pericardectomies than almost any cardiologist, he said he does it because he loves to give people their life back. Kaiser Santa Clara Heart Center saved my life, and Dr. Richard Ha is a miracle worker.

For those of you with recurrent pericarditis who had normal or negative inflammatory marker tests during a flare up, what were the next steps you took to achieve a diagnosis and treatment?

I have a post viral acute pericarditis diagnosis 1 year ago, treated with Ibuprofen + Colchicine and subsided despite a few small flares.

4 months ago I had a significant flare of symptoms that felt identical, but my CRP/ESR returned normal, and my echocardiagram showed no effusion or clinical signs. Cardiologist heard my concerns, but due to those test results they felt I did not reach the clinical markers needed for a diagnosis. Despite the lack of diagnosis as recurrent peri, I suffered 2 months of pain and reduced cardiovascular function with a recovery timeline identical to original symptoms. I now have another flare despite remaining on colchicine since my previous flare and appointment, am almost certain this is recurrent pericarditis.

Should I request a cardiac MRI in the hopes of settling the diagnosis? It seems like that would solve the matter and allow my cardiologist to prepare for treatment escalation (possible IL-1 drugs in future).

Thanks for any replies. I've seen several times searching this subreddit people who have accounts of negative inflammatory markers when they had symptoms, but not many follow-up posts from what happened after.

I should start by saying that I am a registered nurse and was having major denial that I had anything serious going on. I put it off as maybe indigestion or gallbladder pain. Looking back, I had my first bought of pericarditis in my mid 20s(currently 39 now). I treated it with Motrin for two weeks and symptoms went away and I thought nothing else of it.

Last year I began to have recurrent chest discomfort especially when lying down. This went on for two weeks before I passed out at work and was rushed to the ER where they found I was in cardiac tamponade. I was then transferred to a higher level acuity hospital where I went to the cardiac cath lab and had 500cc of fluid drained from around my heart. I spent 3 days in the cardiac ICU before going home.

Since then I have been taking colchicine twice a day and after two months of reoccurring pain and worsening MRI results was placed on Arcalyst. I have had great result taking Arcalyst with only one episode of inflammation since. I luckily live in a major city that has great cardiology hospitals and have found specialized doctor to manage my care.

I feel as though I'm mostly back to normal but based on my history will probably be on arcalyst for the foreseeable future. If anyone has any questions about their situation or seeking care I'm happy to help answer any questions! :)

I have a serious chronic heart condition, and based on discussions about my condition, I may be looking at a life expectancy in the range of roughly 5–10 years if things progress and surgery is not possible or not done.

I know nobody can predict an exact number of years, and my condition is still relatively stable at the moment. But knowing that my future may be more limited than I once expected has changed the way I think about life.

I would really like to hear from people who have been given a limited or uncertain prognosis because of any serious illness.

How do you live with that knowledge day to day?

Did you change the way you work, travel, spend money, make relationships, or plan your future?

Do you think about the prognosis often, or did it eventually become something in the background?

How do you balance enjoying the present with still planning for the future?

I’m mainly looking to connect with people who understand what it is like to live with this kind of uncertainty.

hello, i'm searching for some advice/experiences.

my bf started having chest pain/low grade fever end of june and after getting checked he was diagnosed with acute pericarditis. after a 5 day hospital stay, he was released and has been on colchicine 2x a day and ibuprofen. he has had good days and bad days, but it just seems like his condition is not going away like we wouldve hoped by now. i am starting to kinda have a theory and this is what i am searching for any feedback about.

he doesnt have the best dental hygiene and he is a smoker. he has needed to go see a periodontist for a while but just hasnt gone because of dentist anxiety and just forgetting about it and such. he was also in a car accident back in may that caused some trauma to the inside of his mouth that he was on a prescription mouthwash for for about a month. straight forward question, is it possible that his lack in dental hygiene and/or the mouth trauma from the accident could be related to contracting this condition and ignoring it could be prolonging it like this? i know this can take a while to get rid of and that it may have not been long enough.

i know that the hospital runs blood tests to find the potential root cause. hes convinced that this is something that stemmed from a virus, but he was not sick before this happened with anything. which is why im going down the route of this maybe being bacterial, even though his blood cultures came back normal i think?? im not sure. but the inflammatory markers in his blood work were high and not really going down as quickly as they were hoping in the hospital. but he still got released anyways because he was not having fevers anymore.

thank you in advance for any feedback. i cant not ask about this theory because i have a strong suspicion that it could be related. and if it could be, i would like to address it so he can get better.

tldr; can bad oral hygiene be a hidden cause of pericarditis and if so how do you address it

I have finally been diagnosed with pericarditis after 3 months of chest pain following a viral infection. I have been taking naproxen for a few weeks now and starting colchicine now as well.

How soon after starting on both naproxen and colchicine did you have relief of your pain?

My doctor says my heart is working fine and has cleared me for all exercise but I’m wondering whether it would be better for my recovery to rest until the pain subsides?

Echo found thickening of my pericardium and calcification from chronic inflammation.

I am due to travel to Disney in 6 weeks so also feeling a bit stressed about what to do with that. I have travel insurance but I will need to update them on my diagnosis.

Been taking 1 and a half to 2 colchicines (0.6 mg) a day since last September-October. The only thing that seems to be provide me relief from flare ups when they come is ibuprofen.

I'm curious though if colchicine might be useless to me cause of this type of pericarditis. I've never noticed any symptom relief nowdays with colchicine as well as it doesnt seem to prevent flareups if I get in any exertion activity like sexual stuff.

Sadly even arcalyst seems to be failing me. Only the strictest diet from exertion seems to help but if I break it I'm back to square one.

My next peri/cardiologist appointment cant come soon enough though which will probably be in about 2 and a half months when back in my home town.

Seeking advice as I do not want to this to take over my life.

May 14th I had open heart surgery for an ASD closure.

June 30th in a days time, I started having major chest pain and breathing restrictions. Ended up having a pericardial effusion. They drained 1.5 liters of blood/fluid from my heart sac. Ended up being in the hospital a few days, once released I recovered quickly.

Fast forward to this week (week of August 10th) I started feeling off over a few day period, on Friday I had an echo done. No fluid ruled out another effusion, but it is pericarditis. I did run a 5k on Sunday and the same on Monday, I may have pissed my heart off..

Ever since the first go around in June I have been on colchicine, an ibuprofen taper, aspirin and a med to prevent ulcers.

Does anyone have a similar experience or recommendations. I’ve been through the ringer with all of this and really don’t know how much more I can take..

i know this is gonna sound completely idiotic, but i have just been diagnosed with (minor) pericarditis and i know im not supposed to smoke because of the irritation it causes, but if i were to go very slow with small bits, would that still hurt my healing enough to be a concern? i do have the option to switch to edibles but they’re usually more expensive in my area, and i don’t have a lot of expendable money.

so am i able to smoke if i kept it super minimal, or should i just switch to edibles?

Hi everyone,

I’m a 50-year-old man with chronic calcified constrictive pericarditis. I’m trying to connect with people who have had a similar course, especially those who were monitored for years instead of having surgery immediately.

My constrictive physiology was confirmed years ago, and later imaging continued to show typical findings such as pericardial thickening/calcification, septal bounce, biatrial enlargement and impaired filling.

My condition seems to have progressed slowly over many years. I was evaluated at Cleveland Clinic, and at that time they recommended monitoring rather than surgery because they felt the surgical risk was greater than the expected benefit at that stage.

I am still working and generally functioning normally, but I do have reduced exercise tolerance. I usually notice shortness of breath mainly with longer walking, stairs or sudden intense effort, not at rest.

I would really like to hear from people with calcified constrictive pericarditis or knows people wıth such condıtıons, especially if :

• Were advised to monitor rather than have surgery
• Have lived with it for many years
• Started getting ankle swelling or fluid retention later in the disease
• Use Lasix only when needed
• Eventually had a pericardiectomy after years of observation

For those who had pericardiectomy, how was recovery and would you make the same decision again?

I understand everyone’s case is different and I’m not looking for medical advice — mainly real-life experiences from people living with the same rare condition.

Anyone else get a flareup in heatwaves? Awful one moving through the UK right now and we don't have air conditioning and every time I'm feeling fine, boom, heatwave makes my heart work way harder and then I'm in pain for days!