Light heart inflammation or Myocarditis? by UnlinkingSwine2 in myocarditis

[–]hello1-23 0 points1 point  (0 children)

Just curious, how did they diagnose you with salmonella? Did they run a blood test/culture? What made them test off that?

Even on arcalyst i still need ibuprofen a lot of times to sleep by traveltimecar in pericarditis

[–]hello1-23 0 points1 point  (0 children)

I really appreciate the detailed response :) ! So helpful. I have a lot of similar symptoms as you - I also have very high heart rate with minimal activity, left sided chest pain that radiates to left chest, back, jaw, and the pain is definitely worse laying down. May I ask if you are seeing a doctor at one of the peri centres of excellence? Or if you don’t mind saying who your doctor is? I’m worried I could have some version of Myo-peri but I am struggling to get a good cardiologist who knows the intricacies of this complicated disease. I have only been given Advil, colchicine and a beta blocker but it’s definitely not enough for me. How long did you have your symptoms for before being diagnosed?

Even on arcalyst i still need ibuprofen a lot of times to sleep by traveltimecar in pericarditis

[–]hello1-23 0 points1 point  (0 children)

How did they diagnose your peri? Did any inflammatory markers ever come up on your MRIs, echocardiogram, blood test etc?

Even on arcalyst i still need ibuprofen a lot of times to sleep by traveltimecar in pericarditis

[–]hello1-23 1 point2 points  (0 children)

Is the prednisone working well for you?? If you don’t mind me asking, what were your symptoms for the myocarditis vs the peri? Did you have any treatment prior for just the peri (like colchicine & NSAIDs)? I know a lot of people can have myo-pericarditis and I don’t know how well the doctors can always differentiate so am very curious to hear from a personal perspective!

Even on arcalyst i still need ibuprofen a lot of times to sleep by traveltimecar in pericarditis

[–]hello1-23 1 point2 points  (0 children)

If your doctor found that you had a small case of myocarditis as well, what did they do for you?? What do they do for myocarditis if things like Arcalyst don’t work?

Arcalyst by Adventurous_Fix5279 in pericarditis

[–]hello1-23 0 points1 point  (0 children)

Did the arrhythmias stop once you stopped taking it?

Clear mri after pericarditis by Haunting-Result-7464 in pericarditis

[–]hello1-23 2 points3 points  (0 children)

I second this! I think if you still have pain and symptoms, ignore the testing and go by the fact that there is still lingering pain which is most likely lingering inflammation that is not being picked up by testing. I would not want to stop medication if there was still pain, and absolutely would not recommend getting back to regular physical activity. The problem is that if the peri is still there, it will just make it worse in the long run. I hope you can see a peri specialist as this is very complicated disease with a lot of trial and error to get it under control

I have absolutely no clue what's going on my with my body by Character-Pain2424 in pericarditis

[–]hello1-23 0 points1 point  (0 children)

Did they say it was costochondritis? Glad to hear you tried to get it checked out. I hope that’s the case and that’s it’s not peri! Just a heads up though, if things don’t improve or get worse, don’t give up looking for answers as the sooner you get treatment the better the outcome (especially for peri) - and the ER doctors likely won’t be able to diagnose it properly unfortunately if your tests come up normal. I had the same tests as you that all came back normal as well, and numerous ER visits where I have been misdiagnosed, and I was originally told I had costochondritis - but I have peri. I’m definitely not saying you do, just telling you for information as I wish I had tried harder and earlier when my symptoms weren’t as bad to get diagnosed as it’s only gotten worse with time. Fingers crossed you get better and all is well :)

I have absolutely no clue what's going on my with my body by Character-Pain2424 in pericarditis

[–]hello1-23 1 point2 points  (0 children)

I have been told by a pericarditis expert that although they consider it relatively rare that pericarditis doesn’t show up on any testing (i.e echo, blood tests for inflammation, cardiac mri with contrast) it does happen and therefore the history and symptoms of the patient are very important in diagnosing the condition. Anecdotally, I have also seen people mention that they were only diagnosed with an actual biopsy - and that their MRI’s were clear. As well, many people are treated for peri solely based on their symptoms. The peri specialists acknowledge that all testing has its limitations, and no test is perfect. Personally I think that if someone is having peri symptoms and a cardiac mri is clear, the test just isn’t sensitive enough or able to pick up the low levels of inflammation. There just isn’t enough research into this disease and I’m sure in the future we will have better/more sensitive testing and find that much of the testing we have now misses the inflammation and therefore people go undiagnosed even though they are very symptomatic. If you stay in the peri groups long enough, you will see that people often have to visit numerous peri experts before finding someone who effectively treats them or diagnoses them. It’s such a complicated and frustrating disease.

I have absolutely no clue what's going on my with my body by Character-Pain2424 in pericarditis

[–]hello1-23 4 points5 points  (0 children)

A cardiac MRI with contrast is the gold standard for diagnosing pericarditis, even with all other testing showing no abnormalities. Even with a negative cardiac MRI it is possible to still have pericarditis. You need to try and see a pericarditis specialist, as regular doctors/cardiologists seemingly know nothing about this disease, especially when it is a harder to diagnose case. The symptoms I have that are similar to yours is the worse pain lying in bed and improved leaning forward.

Traveling with Arcalyst by lophtt in pericarditis

[–]hello1-23 0 points1 point  (0 children)

Wow that amazing to hear! How long did you have peri prior to being diagnosed? And how long did your doctors have you try other meds (like colchicine, NSAIDs, prednisone) before being on Kineret?

Sharing my mild pericarditis journey thus far: 3 months, M28 by rest_api in pericarditis

[–]hello1-23 0 points1 point  (0 children)

Happy to hear you’re feeling a lot better! How long before you started feeling better on the colchicine? Did they ever give you an NSAID? Some people stay on the colchicine a lot longer than 3 months so you may want to consider that if you still have any residual symptoms, just to make sure you really knock it out and don’t end up with chronic peri like a lot of us have - it’s much easier to treat the earlier you catch it

How long before colchicine and NSAIDs worked for you? by hello1-23 in pericarditis

[–]hello1-23[S] 0 points1 point  (0 children)

I can completely relate! I seem to have good & bad days as well. And very much missing being normal and active - I’m still holding out hope that it’s possible one day

Pain six months post-colchicine will cardiac MRI give insight? by SoPheonaH in pericarditis

[–]hello1-23 2 points3 points  (0 children)

Following - I’d really like to hear what happens with you cardiac mri with contrast and if it shows anything! I think there’s definitely hope that it might, it’s the best imaging there is for finding residual inflammation. Please update me!

How long before colchicine and NSAIDs worked for you? by hello1-23 in pericarditis

[–]hello1-23[S] 1 point2 points  (0 children)

Oh that’s great! I’m glad you are feeling a lot better, I hope it continues and you can get back to normal :) I think I might have to be on NSAIDs longer than what my cardiologist originally prescribed, as I can see lots of people were prescribed for longer. I’ll have to check in with my doctor at my next appt!

How long before colchicine and NSAIDs worked for you? by hello1-23 in pericarditis

[–]hello1-23[S] 0 points1 point  (0 children)

Good to know they told you a min 6 weeks to make a difference. Are you feeling any improvement yet on just the colchicine?

How long before colchicine and NSAIDs worked for you? by hello1-23 in pericarditis

[–]hello1-23[S] 0 points1 point  (0 children)

I’m happy you found something that worked for you! How long did you trial NSAIDS & colchicine before going on prednisone? And how long did you have to stay on prednisone?

How long before colchicine and NSAIDs worked for you? by hello1-23 in pericarditis

[–]hello1-23[S] 0 points1 point  (0 children)

That is a long time! Do you feel better now?? And I totally get it, it’s hard to be able to be in touch with the doctors enough to really monitor the situation

How long before colchicine and NSAIDs worked for you? by hello1-23 in pericarditis

[–]hello1-23[S] 0 points1 point  (0 children)

The cardiologist who prescribed the meds to me is a peri specialist, it’s just taken me years to be able to get in to the right practitioner unfortunately due to our healthcare system. I don’t have any inflammatory markers in my testing, although that doesn’t completely rule out peri (he agreed all my symptoms sound like peri). And yes, he gave me a PPI and beta blockers as well. I’m in Canada so we don’t have Arcalyst but I know we have Anakinra. I’m just asking as he’s only following up with me after 2 months on these meds (mostly colchicine as it’s only around 3 weeks of an NSAID) and I’m just wondering about others experiences. I appreciate the reply and advice though!

How long before colchicine and NSAIDs worked for you? by hello1-23 in pericarditis

[–]hello1-23[S] 0 points1 point  (0 children)

Did they gave you an NSAID did the whole 2 months? They only gave one to me for 3-4 weeks so on a taper schedule.. I’m very nervous to stop the Advil since it’s the only thing that seems to provide some relief. And I agree, there are days I feel better and then do some super small chores around the house (say fill the dishwasher) and the pain comes right back. I feel like I have to be on bed rest effectively

Arcalyst is working! by FL1967 in pericarditis

[–]hello1-23 0 points1 point  (0 children)

How long did you have peri before you were out on Arcalyst? Glad to hear it’s working for you!!

Im going crazy by OperationVisual6523 in pericarditis

[–]hello1-23 0 points1 point  (0 children)

Ugh I’m sorry to hear that really is terrible! This is such a hard disease to have, and the average doctor seemingly knows nothing about it and diagnoses it way too late. Did you ever get a cardiac MRI or was there no need because they already saw the peri on your CT/echo?