Just been diagnosed with myocarditis on top of vasculitis. Feeling vulnerable and scared. Anyone else been diagnosed with this. TIA ❤

[M3LZY]

Myocarditis with vasculitis

[Lone-wolf]

Yes, I wa diagnosed with Myocarditis when I was also diagnosed with Rheumatoid arthritis and vasculitis. The good news is that my myocarditis healed itself and my vasculitis has gone into remission but I am still left with the Rheumatoid arthritis which limits my ability in doing normal activities but I'm still fighting and, hopefully, I will conquer that also.

[M3LZY in reply to Lone-wolf]

Great news you conquered myocarditis I'm scared I won't pull through. As my vasculitis and myocarditis is via covid. I feel such a baby at the moment. Just all kicks off up my neck, arms, hands fingers and chest and upper abdomen. What really helped you.

[Lone-wolf in reply to M3LZY]

Basically, self determination! I absolutely refused to give into the disease. The conditions I experienced was severe pain in my arms and legs. Because the blood vessels in my lower legs were affected I also developed ulcers on the legs and I ended up with having to have 4 layer compression bandages on them. The specialist nurses said that it would take up to 2 years to cure the ulcers and they tried all sorts of creams and lotions on them until I suggested using an alginetic dressing which they did. Also there were few district nurses able to clean and dress my legs so I did it myself, even when in hospital and managed to cure the ulcers in 6 months! but due to the nerve damage caused by the vasculitis I had a balance problem so I set about challenging that by cycling two miles without falling off. to cut a long story short I eventually went sailing, how better to test balance than to stand on the deck of a boat while sailing on the rolling waves, That was done and I'm gardening again but with a little fatigue at times especially if I'm doing hard work. Even planning, preparing and cooking meals can be thought of as a challenge and now i'm known as being a very good cook. As for medicines, I was prescribed Mycophenolate and Prednisolone for the vasculitis but the Myocarditis has passed with just a little bit of scar tissue on my heart wall. I do know a doctor who has long covid and her heart was similarly affected with myocarditis but she too is slowly getting better. So keep your chin up, live for the day and give yourself challenges. It doesn't matter if you at first fail at them, you will eventually succeed, so don't just give up. Good luck on your journey with Vasculitis.

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Good morning can I ask what treatment have you been offered for your latest diagnosis of Myocarditis I find your journey with your Vasculitis diagnosis questionable and vague