Well, I hope all is not doing too bad,
This is a rare disease so I thought I would post a little info to let anyone outhere who has it or gets it...some of my expierience with it.
I went to my cardiologist appt. today and she said that I still have the myositis on the heart. She said it is a waiting game now..to see if there is any damage to the heart muscle. I am still having symptoms. She said it's like a cut that heals, some heal and leave a scar, and some don't. She said it could take a few more months before I actually find out the outcome. I have been having heart palps everyday now since the beginning of getting this. They get up to 154 a minute. In the meantime she wants me to wear a heart monitor for a week to see if the arythmias(Spelling) are normal or not. She can't put me on any meds for it right now, because my blood pressure is too low. But if there is abnormal arythmias (spelling...brain fog) then she will have to put me on something. Another bummer is my cholesterol levels have been so high. She put me on a med to lower the cholesterol back in December that caused me to have myositis in the other muscles. Every muscle in my whole body was affected. So out the door with that. Then I did my own research and found out that the steroids can cause a rise in your cholesterol levels and in a very short time. I have been on them for a year now. But I have to be on them until I get through this nasty flare. Rhuemy wants to put me on Methrotrexate along with the enbrel I am already taking...I hope he hurrys up because I want off the steroids.I really think that they are affraid to treat me, and they don't know what to do. I am tired of them sending me these letters telling me to WATCH YOUR CHOLESTEROL DIET. I have been, that's what made me research. If anyone has any questions I will be glad to answer. I won't pretend that I know everything thing about it, just MY expirience with it.
Anyway thanks for listening to my rant.
And Blessings to you all,