heart inflammation out of the blue for 2 and half years and counting

[Cardiacmyositis]

I’m a 26 year old male that was in the army and became ill at 24 years old with myocarditis and LVEF reduced to 10% and experienced complete heart block and needed emergency pacemaker fitted(now have an ICD fitted). LVEF has fluctuated massively through 2.5 years of intensive treatment and now sits roughly at 35% with my Troponin sat at about 200 currently (when I have a flare up Troponin has been up to 4000).

-I have been on large dose of steroids/methylpred (currently down to 10mg daily of prednisolone)

- I have had 10x1g infusions of cyclophosphamide may 2023-March 2024

- I take tacrolimus daily for a tac level between 6-8

- I started Rituxan June 2024 2x1g infusions

- I’m now approved for IVIG if I have another flare up . But hoping this might be a permanent treatment?

So just wondering if there is anyone out there with a similar condition to myself. Who has tried different treatments to myself and if they worked.

My working diagnosis is cardiac myositis with a heart biopsy which just showed regular myocarditis inflammation.

I’m obviously struggling with my life changing on going condition so any help or advice would be amazing!

[Padparacha]

hiya saw you are new and wanted to welcome you, you’re obviously a strong brave guy re the army, I don’t have the same as you but 35%EF when I was diagnosed with heart failure in April but after the correct mix of drugs my recent MRI shows my heart has reversed to normal, feels like a little miracle, the cardiologists are incredible they will look after and support you, hang on in there mate xx