Inflamed
They took me off steroids after 13 yrs. Been 3 months now. Lupus blood work is good. But my body is so very inflamed. Hard to even dress myself. When I first had lupus I had this same thing and the steroid helped it. Now sr won’t give me steroids because like I said lupus blood work is good What to do. In so much pain and so very tired
I know how you feel. Went from prednisone to sulfasalizine. I am having more pain than I have had in the past.
, I am sorry you are dealing with inflammation and pain. I know that prolonged steroid usage is generally discouraged, but did your doctor tell you why he/she recommended this course of action? And, just because your Lupus numbers look good doesn't mean you aren't experiencing serious issues.
I am so sorry you are in this position and I hope you are able to have some more discussions with your physician. Because in the end, you are the one who gets to decide your course of treatment. Hopefully, your doctor is willing to listen or at least gives you some very clear reasons as to why this protocol was stopped. And you can decide whether the risks are worth the benefits, should you go back on prednisone.
Best, Erin, Lupus.net Team Member.
