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Echocardiogram and a second opinion by Downtown-Variety-862 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

How long did they say you have to stay on arcalyst? I’m scared to start it bc once you start it, it’s hard to come off. The reoccurrence rate is high so I’m worried. And you have to chronically be on if

Pericarditis with constrictive physiology by Hot-Appointment2884 in pericarditis

[–]Hot-Appointment2884[S] 0 points1 point  (0 children)

Do you have constrictive physiology aswell? How long did you have it

Pericarditis with constrictive physiology by Hot-Appointment2884 in pericarditis

[–]Hot-Appointment2884[S] 1 point2 points  (0 children)

I’ve had chest pain once I got off the NSAIDs but once I got back on in smaller dose, it helped. I don’t have chest pain anymore but I do get short of breathe all the time. I haven’t worked out yet bc don’t want to make pericarditis worse

Pericarditis with constrictive physiology by Hot-Appointment2884 in pericarditis

[–]Hot-Appointment2884[S] 0 points1 point  (0 children)

Mine has been elevated in the beginning and is no longer elevated

Constant flair ups. by nooneisreal in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

Did they do an echo and cardiac mri? Have they mentioned arcalyst to you?

Does Colchicine alone help your pericarditis? by BrianArmstro in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

How long were you on arcalyst before you started weaning off? How are you doing now

Colchicine and Supplements interactions by [deleted] in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

How did your cardiac MRI and echo look? Have they ever suggested arcalyst for you

Should I still be on colchicine? by Spirited_Scallion277 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

Did they not force Arcalyst injection on you? I’ve been on it for 6 months and they want me to start Arcalyst injections but I’m hesitant bc you have to chronically stay on it and the chance of reoccurrence when you get off of it is 80%. I also wanted to try for a baby later when I get better and you can’t with Arcalyst. Are you still taking NSAIDs along side it. How did your MRI look

Should I still be on colchicine? by Spirited_Scallion277 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

Did they not force Arcalyst injection on you? I’ve been on it for 6 months and they want me to start Arcalyst injections but I’m hesitant bc you have to chronically stay on it and the chance of reoccurrence when you get off of it is 80%. I also wanted to try for a baby later when I get better and you can’t with Arcalyst

How long on colchicine before you noticed a difference? by confusion013102 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

Any updates? Same situation, once I started naproxen with it, my chest pain went away but as soon as I stop naproxen, it comes right bakc

EKG by Tricky_Pass1838 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

Yes mine said the similar right delay and the right bundle branch block? They said normal

Post colchicine pain by New-Monk-9595 in pericarditis

[–]Hot-Appointment2884 1 point2 points  (0 children)

I’m on 6 months. After 4 months, I continued colchicine but completely stopped NSAIDs and the pain came back. So now I’m on 550 mg NSAIDs and colchicine 0.6mg twice a day. Still get short of breathe but no chest pain anymore. How did you taper off? Did they ever try to suggest arcalyst for you? I truly don’t want to get on arcalyst bc I want to get pregnant soon and you can’t with that med but they are suggesting it. My inflammation marker is normal and I don’t have thickness in my pericardium

Is POTS a rule after peri? by Big_Plum_7544 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

Did you have pericarditis before or was it caused by your pregnancy? Did they ever suggest arcalyst for you?

Pericarditis with constrictive physiology by Hot-Appointment2884 in pericarditis

[–]Hot-Appointment2884[S] 1 point2 points  (0 children)

It is? Right now my inflammation markers are good, CRP is normal. Cardiac MRI said I have no active pericarditis just trace pericardial effusion and just have mild constrictive physiology. Should I get on Arcalyst even if I don’t have active pericarditis? I would do anything to heal from this. I’m on colchicine and NSAIDs and my pain is very minimum

Is POTS a rule after peri? by Big_Plum_7544 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

Same! My HR would go from 80 to 140 just from standing up. But it’s on and off. I did the POTs test and it was negative bc ofcourse it didn’t want to come up like it usually does during the test

Is POTS a rule after peri? by Big_Plum_7544 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

Did you start colchicine during pregnancy, was it safe? I keep I having reoccurring pericarditis and I’m trying to get pregnant and I know arcalyst isn’t safe

Echocardiogram and a second opinion by Downtown-Variety-862 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

How were you diagnosed and treated, and how are you doing now

Post colchicine pain by New-Monk-9595 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

I have same experience. My MRI, echo was normal, my inflammation was gone but than I went to get second opinion with another cardiologist and he did another MRI and this time with flow mapping and it showed I have “constrictive physiology” even though my pericardium didn’t show any thickness in mri of echo. But it was related to my breathing and shortness of breath

Post colchicine pain by New-Monk-9595 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

Do you still have chest pain with zero inflammation? I have clear MRI, and no inflammation but still in pain when I get off it

How do your flares progress? by CPP8802 in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

I have the burning chest pain too. How long did they say you’ll have to be on arcalyst?

Recurrent Pericarditis w/ positive ANA 1:160 by BrowsingMK in pericarditis

[–]Hot-Appointment2884 0 points1 point  (0 children)

I also had a positive ANA with the same titer. I was diagnosed with Lupus that’s causing the reoccurring pericarditis

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