I’m taking colchicine twice a day. My doctor also had me take 4 every 8 hours for a week. Then reduce to three pills, then 2 pills than 1 pill.
I’m taking 2 pills twice a day on my last week. 1 pill caused me pain.
Am I supposed to live with the pain while just taking colchicine?
Has anyone that is currently on Arcalyst, experience almost zero effect from previous doses of prednisone and colchicine?
I am 1 year into pericarditis and after 2 tries with prednisone and a year of colchicine, neither had any noticeable effect. NSAIDS reduced pain & symptoms, but never actually got rid of either. Starting Arcalyst next week and wondering if anyone else has experienced this? If so, what is your experience with Arcalyst so far?
So im currently in recovery and was thinking abt smoking. i had surgery 12 days ago to take out the fluid and i was diagnosed with pericarditis. the crazy part is they took out 750ml which as u might know is huge? but anyway i was wondering if it was ok to smoke weed. i know it raises heart rate and things like that but since the surgery no fluid has come back which is a good sign. and honestly im fine with smoking if there is little risk i just want to make sure i wont die or anything. mostly just wondering if anyone has doine it and it turned out fine
Hey,
Has or does someone correlate their pericarditis to gastrointestinal issues or disease ? Especially with rather high calprotectin rate ?
Do you think it may have caused your peri or made it reoccur ?
I’ve researched a little and some studies suggest there are a link, and I wonder now if it’s my case as well (at least it more likely seems to🫠)
Bonjour, je suis allée aux urgences car j’avais des douleurs thoraciques qui irradiaient un petit peu dans le bras gauche ainsi que le dos et la mâchoire. Ils m’ont fait plusieurs examens cardiaques ECG prise de sang et échographie ils n’ont rien trouvé à part un léger épanchement au niveau du péricarde, mais rien de significatif et également le fait que mes symptômes augmentent quand je suis allongé sur le dos et se soulage quand je suis penché par l’avant, ils m’ont dit que cela leur faisait penser à une péricardite, ils m’ont donc traité pour mais depuis je n’ai pas d’amélioration. Est-ce que vous aussi vous avez déjà été diagnostiqué d’une péricardite alors que vos marqueurs sanguins n’étaient pas élevés que vous n’aviez pas de CRP élevé et que vous aviez simplement un épanchement léger visible à l’échographie et non pas d’inflammation visible ?
Depuis j’angoisse en me disant que c’est peut-être un problème plus grave et qu’ils passent
à côté (type infarctus…)
Merci beaucoup à vous et courage si vous êtes touché par cela
Bonjour à tous, est ce que pendant votre péricardite vous aviez des douleurs qui irradiées dans la mâchoire également ? Car ce n’est pas un symptôme que je vois beaucoup pourtant je le ressens énormément
Bonne soirée à vous
60y old male, always have been in good shape, and (used too) exercise regularly. During a viral infection last year, I started having chest tightness/pain, shortness of breath. Weeks after the virus cleared up, I started to experience heart palpitations, and increased pain/tightness. Any exercise would make the symptoms much worse. The heart palpitations got much worse. Every 5 min or so I would feel a skipped heart beat, followed by a giant heart beat that would actually move my body. My wife is a surgeon, so there was no shortage of people to see. However, every test came back normal. No elevated C-reactive protein, chest scans normal, stress test normal, cardiac mri normal. I was able to record some of the skipping / giant heartbeats on my apple watch, and my cardiologist began to suspect pericarditis. 2 different doctors have sworn they heard very apparent heart murmurs, but nobody else did, and they are not persistent. I suspect it was a pericardial rub they were hearing, and my cardiologist confirmed these can come and go and can be hard to hear. He has never heard one while I was in his office.
Went on colchicine and high dose NSAIDS for 6 months, and saw some reduction in symptoms, but never a day when they were totally absent. Tried a 5 week prednisone course, and actually had some increased symptoms at the start, but then towards the end a few days of very low ALMOST gone symptoms. But then they returned again. It has been a full year now without a day of zero symptoms. Normally the symptoms are just a dull ache, racing heart/shortness of breath if I do minor activities, and increased chest pain symptoms - especially lying down - and if I push it too far (heart rate over 130 or so). Very classic symptoms, but no test evidence of inflammation.
I am starting Arcalyst next week, and really hope to see some improvement. Being unable to exercise, or go on hikes, play sports with my teenage son...really just enjoy a normal life has been difficult over the past year, as many of you can relate to. Also getting your head around a condition that doesn't go away on it's own, or with meds.
Is anyone dealing with all the classic symptoms, but without the test evidence? And have any of you had luck with Arcalyst?
I was diagnosed with pericarditis June 2025. I woke up in the middle of the night with stabbing chest pains and could barely breathe. I was prescribed colchicine, and a ton of ibuprofen for around 2 months. I got the all clear (no inflammation) on the final echo. I still notice pain on the left side of my chest a year later. I went to the ER last week and they said ekg/ chest X-ray look normal, and to follow up with my PCP.
It’s hard to explain, but I just feel “off.” My chest feels heavy, dull, like a dumbbell. When I was initially diagnosed a took a 6 week break of no lifting weights. I just lift, no running, some steady state walking indoor or outdoor. I feel like I am going crazy because everything looks “normal.”
Is it in my head? Nerve damage? The current cardiologist I see told my to follow up with my PCP which I don’t want to do. I know this is peri related…
I'm getting ready to start Arcalyst next week and have lots of questions!
1)Does anyone ever hit a blood vessel and have to discard the dose and start over? I travel internationally 3-4 weeks at a time each quarter, and I am concerned about being able to bring enough medication to accommodate a potential re-do.
2) Any recommendations for a travel storage solution? I have looked at this product: 4AllFamily Pioneer (RxCoolers Max) It appears it can hold up to 4 doses. I am usually on long haul 12hr+ flights.
3) How about the injection site inflammation? How serious is it? I see that this is the main side effect of the injection.
Thanks for any suggestions & insight!
Accompanied by crampy pain in neck and mildly restricted breathing. No diagnosis.
My last episode was over a year ago- I’ve been on arcalyst 10 months. My average HRV for the year is 28 ms (according to fitbit). I’m always fatigued. Anyone else? This feels significant
I was blowing up my paddle board today, and the pain came back. Does anyone have a painful chest, like on the outside of their skin, when you poke it?