I was asked a question about remission and CSS in a FaceBook group and I’d thought I would re post my answer here so everyone could see it — it may not be the popular answer and I base my answer on my research and personnel experience and those CSS patients around me who I have the privilege to know for the past 8 years.
As a precursor to this answer I have to say I believe acceptance of having a Vasculits and autoimmune disease is VERY, VERY hard. When I was first diagnosed I fought it.. kicking and writing… I read but did not listen to those with more experience who preached their quiet acceptance of CSS… I hated them for accepting being on pred for the rest of their lives. With time comes clarity and understanding. so here is my answer to the question about my views on remission.
My views on . “time to remission” may not be what people would like to hear. In personal experience, I have had CSS symptoms for 8 years now and was Diagnosed 7 1/2 years ago.. I have NEVER been in remission…. Because I am considered, ‘highly refractory’ I may never be in remission… So I may have a rather dark attitude toward the term remission.
Too many Vasculitis patients consider remission to be off all meds (especially pred) and that just isn’t the realistic case in most patients — Most CSS patients will find they need a daily maintenance dose of prednisone to keep their illness from flaring (a maintenance dose of prednisone is considered anything under 10mg from my understanding). Inflammation of our vessels is the danger zone we live in — prolonged, uncontrolled inflammation will cause permanent damage to blood vessels which in turn causes damages to organs. After years of fighting prednisone and some of my other meds I have finally accepted the fact that prednisone is NOT my enemy — it is my savior… Without it or with insignificant amounts of it I would have major organ and maybe irrecoverable organ damage.
My doctors have always ‘hit’ my CSS with large amounts of prednisone to quiet the inflammation ASAP so it did not cause any organ damage. I have been on 80mg and more of prednisone more times than I care to remember. Remission is a word I really do not like anymore…. I prefer the term of quiet… under control…. no active inflammation at this time. I resent the fact that when we are first diagnosed the word ‘remission’ is put out there and then doctors give unrealistic timelines… that we hang on to because we really want our old lives back, we just want to return to who we were with all the boundless energy. How can a doctor say, “9 months to remission” when they really have no idea… there is no medical definitive for Vasculitis clinical remission and the doctors can’t even agree on the definition of remission for Vasculitis.
I can look back in my notes over the past 8 years and see where the definition for remission in Vasculitis has changed again, and again… I think the cyclical nature of Vasculitis is the best diagram that I have seen and the most realistic in terms of the cycle patterns of our illness. I also think every patient is different and how the inflammation affects us is different (along with the how effective certain meds are on different patients). I really believe there are sub-classes of CSS…. not just ANCA positive and Negative and with more genetic testing and realizing how our CSS became activated we may get a better understanding in the future.
Hope this rambling of an answer helped…
Posted in CSS by karen in wonderland with .