u/nessipin

Hello everyone,

I hope you all hang on as much as you can...

Rather atypical post and Idk how to phrase everything, but I wonder what was your 'medical follow-up' or your overall experience after the failure of the first-line treatment (ig NSAIDs or ibuprofen + colchicine + PPI), and therefore the persistence of symptoms?
Especially depending on where you come from, and on whether you have clinical elements in your possession (for example: if you still had/have traces of pericarditis or inflammation on imaging / blood tests / ekgs etc)...

As far as Im concerned, Im from Europe (France to be more precise), I was diagnosed in the end of August 2024 given negative T waves (v1-v5) on ekg and cardiac MRI with 6mm effusion (but had my symptoms weeks if not months before but had no luck with doctors).

Got treated with aspirine (1 month) + colchicine (3 months) starting in September 2024. Then, in December 2024, when I told my former cardiologist that I was still experiencing symptoms, she told me ‘there was nothing else that could be done and that as a result it wasn’t pericarditis’ (when we all know there is but Ill spare you the details and just say that ever since I had no luck with other doctors / hospitals and so called specialists or internal medecine, but the medical field is very different here, so yh)…

What about you all ? And regardless did you find your cause (to your pericarditis and / or to what keeps your symptoms going) ? X

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🫠)

Hey, has anti histamines (like bilaska) helped you ?
Do you have allergies (pollen or others) as well ?

This is supposed to be my treatment, as well as saline rinses and nasal sprays (rhinomaxil)…

I started couple years ago but quickly stopped the bilaska bc of the side effects I experienced…

I had turbinate reduction a few days ago and have the same treatment, as well as nasal oil spray…

I figured Id do the full treatment this time for better success but reached a breaking point now, couple weeks after, so Im contemplating stopping bilaska…

But the side effects might also not be related to bilaska (I have other symptoms / diagnoses)…

Hey,

Is pericarditis the same as pericardial effusion in your opinion ? I’ve seen multiple doctors / specialists, researched as much as I can but don’t know what to believe anymore…

What if I do have effusion but I have no inflammation whatsoever (no CRP, no inflammation on MRI, ‘just’ persistent water/ effusion), do you guys still think it’s pericarditis ?

I also have all the typical symptoms and persistent T wave inversion (v1 to v6)… Plus all the subtle specificities (flair up after more exertion, after sickness, high heart rate, menstrual cycle, etc)…

Im only asking bc 3years after doctors / specialists r still going out of their way to keep gaslighting me and minimise everything and not wanting to do the slightest thing for me (not even painkillers, additional testing, nada)…

But Im also from France so no Arcalyst, very very limited & restricted kineret prescription, and A LOT of gaslighting and misunderstanding, minimizing and close-mindedness towards this condition (eventhough not the only one ig)…

For them, except if a miracle occurs, no inflammation means bye-bye, and even on the contrary it’s still a struggle to be heard…

Idk how long I can keep doing this, actually I can’t, tonight is proof, something is really wrong w my body and ER r also HELPLESS… This intensity of pain & symptoms can’t be

Anyways, just wanted to compare this view with other medical systems…

Good luck everyone, this is not for the weaks…

Hey,

Has anyone unfortunately been denied Arcalyst or kineret, etc ?

Or Has anyone had no luck / no improvement with kineret / arcalyst, etc ?

If so, how and where are you guys now ? Not too bad I hope (eventhough that is helluva bad situation to be in, understatement…) ?

Sending hope and support your way🤞💪💕

Hey,

When and how have yall been diagnosed ?

What has helped you / Any advice so far ?

Did it reduce with intermittent fasting and weight loss ? It kinda has for me, at least a little…

I fear my ibs-c is 10y old, and was aggravated with posterior endometriosis diagnosis, as well as long covid and fibromyalgia…

No luck with anything for bloating, but for constipation magrogol can sometimes help, and recently Ive tried sollievo physiolax which helped… No luck with low fodmaps..

Hey, has anyone done a PET Scan ? If so, what was your experience and did it show anything ? Thank you and good luck to us all 💕

Bonjour, quelqu’un aurait un lieu à me recommander pour un TEP / PET Scan du corps entier et/ou du coeur ?

Merci par avance !

Bonjour, est-ce que quelqu’un aurait des conseils et/ou un interniste spécialisé (Paris / IDF ou ailleurs en visio) à me conseiller en vue d’une prise en charge et un traitement (a priori kineret) - Notamment ouverts / laissant le benefice du doute aux péricardites idiopathiques sans inflammation ?

C’est vraiment urgent, 3ans+, symptômes +++ en permanence, et je ne tiens plus du tout, aucune prise en charge, aucun traitement ni anti-douleurs, je suis à bout…

Merci et bon courage au besoin :)

Hey, I hope you are all doing as well as possible…

Has anyone found the root cause and / or cure for their NAR ?

Has anyone experienced one of the following problems : allergies including pollen, IBS-C, dental radicular cyst, long covid…

What treatment or other approach have you tried ?

Has radiofrequency laser for turbinates done by ENT helped ?

Thanks and best of luck to yall 💕

Hey, I hope you are hanging in there…

Has anyone had pericarditis and / or costochondritis as well as fibromyalgia ?

How do you differentiate fibromyalgia chest pain vs. costochondritis vs. pericarditis ?

Thanks and good luck to everyone x

Bonjour, est-ce que quelqu’un aurait des conseils et/ou un(e) interniste spécialisé(e) à me conseiller (Paris/ IDF/ visio) en vue d’une prise en charge et un traitement (a priori kineret) - Notamment ouverts / laissant le benefice du doute aux péricardites idiopathiques sans inflammation ?

C’est vraiment urgent, 3ans+, symptômes +++ en permanence, et je ne tiens plus du tout, aucune prise en charge, aucun traitement ni anti-douleurs, je suis à bout…

J’ai quasiment tout fait, urgences, médecine générale, cardiologues, internistes, rhumatologue, pneumologue, orl, allergologues, psychiatres, medecins de la douleur et centre de la douleur (viennent de me lâcher et n’ont pas accepté de me donner des anti douleurs, cherchons l’erreur…?)

Merci et bon courage au besoin :)

——

Contexte :

-24F, antécédents endométriose (2019) + covid long et EM (2020) + péricardite (2024) avec fibromyalgie subséquente (2025) + (2026) suspicion POTS- recherche prise en charge spécialisée en médecine interne Paris / IDF

• Traitement => septembre 2024 : aspirine + omeprazole (1 mois) + colchimax (3mois) => légère amélioration pendant ce traitement (mais effets secondaires donc toléré - - -)

• Éléments cliniques :
-ondes t négatives v1 à v6 (premier ecg juillet 2024 et dernier février 2026)
-2 irm cardiaque (sept 2024 : épanchement 5-7mm et sept 2025 fine lame d’épanchement résiduelle)
-1 coroscanner (mai 2025 décollement péricardique 5-7 mm)

• Symptômes principaux :
-Douleurs et oppression thoraciques qui irradie jusque bras, mâchoire, nuque, épaule, & Pression poitrine (pique, serre, tire), fortes palpitations ;
-Difficultés respiratoires voire dyspnées : essoufflement même au repos ;
-Fatigue excessive, faiblesse physique, vertiges / étourdissement ;
-Douleurs de dos derrière le coeur (haut à gauche) & douleurs musculaires ;
-Transpiration ;
-Maux de tête, toux

Hey, has anyone never seen their pericarditis (or myocarditis) pain gone (so always a first layer of quite intense pain and symptoms), and in addition to that, have a second / other layer of pain that can constitute a flair up ?

I don’t know how to explain, but when I got treated with aspirin (1 month) and colchicine (3 month) couple years ago, my original symptoms never went away (and no doctors whatsoever cared lol)…
So I just rested but, In addition to those initial symptoms (quite intense to say the last), I had / have random flairs (for example : when I get sick, or in relation to menstrual cycle, or when I have to do a random effort like shower or dishes etc)…

As a result of all of this, Ive been in pain and bed bound for like 3 years, every single day… I just noticed that during the month of March 2025, I felt better, less pain and mainly discomfort - and sometimes, randomly, I would even noticed that I wasn’t in pain for few minutes…

After that month, I flaired up very badly and still haven’t gone out of that last flair yet…. 🫠🥲

Is anyone like me ? What has helped you ?

Hey,

Have some of yall noticed a link / correlation between their menstrual cycle and peri/myocarditis pain ?

Where are you now and what has helped ?

Has arcalyst or kineret helped with both symptoms (related to menstrual cycles and heart symptoms) ?

I suspect some auto inflammatory process that still causing my peri pain 3 years after… Still looking for treatment…

Good luck to us all <3

Hey, has anyone done a full body and/or cardiac PET Scan ?

If so, did it show something non visible with other tests like MRI or regular scan ?

Thanks and good luck to yall !

Hey, has anyone improved their symptoms (high heart rate, heart pain, shortness of breath, etc) using any or both those medications ?

If so : what did it improved, when & how long did you take it/them, and any side effects ?

Tysm, good luck to yall x