Cardiac sarcoidosis and SVT / VT - Methotrexate not working?
Hi, I write this to seek an advice from ppl who share the same issue than me. I have cardiac sarcoidosis and was diagnosed via PET-CT a few years ago because of a 3rd degree heart block. It showed granulomas and inflammation in the middle of my heart. First I was on prednisolone 40 mg and the 3rd degree heart block disappeared. My prednisolone was gradually reduced. At the beginning there was no SVTs / VTs and I didnt noticed my heart beating. When I was at 25 to 20 Mg prednisolone I startet to feel my heart more and some palpitations / heartbeat. It turned out that I have 2500 VT / day. I dont know if they were before and I didnt noticed, or though prednisolone reducing. I managed to live with it and it was ok for me. Sometimes they are, sometimes they disappear. When I got to 5 mg the 3rd degree heart block came back and I got another PET-CT. It showed, that I have inflammation in the middle of my heart and added to this - in the tip of my heart now plus in bones. So the prednisolone was increased again and the 3rd degree heart block disappeared again. But then I noticed very unpleasant palpitations and it turned out that this are SVTs - 2500 / day. Now I am reducing prednisolone again and started methrotrexate.
I am feeling like, the more I reduce the prednisolone, the worse and more my VTs / SVTs get. Did someone had this too? I cant judge, if its the inflammations coming back, or its maybe the scarring in my heart that causes this, because it works? And I guess the methotrexate isnt working, it feels like, but I cant say. I had no other PET-CT yet. It feels like the line is at under 20mg prednisolone where it starts to feel unpleasant and the VT / SVT starts. Methotrexate changed nothing. I must say that I had never experienced any adverse side effects of prendnisolone or methotrexatre. I am a bit unsure about my situation because my quality of life is slowly getting worse and I get more and more symptoms and it feels like the sarcoisosis is slowly approaching. Is it possible, that methotrexate isnt working on my cardiac sarcoidosis? I think I will know, if the 3rd degree heart block comes back. Thx for you answers and big regards on all who fight against this desease.