Weg flare without any detectible anca markerrs possible?

[Tom]

Eating is one problem. I was a grazer before all of this happened. the worst part was the roid rage. I became aware of the rage when I started cancer treatment in 2006 and in the first week, I wanted to drop the pastor while in church because he said good morning and blessings and thanks for coming. I wanted to hit anyone who got near me. When asked by my oncologist how I did the first week of my treatment I said I was doing well, but the wife said he has been exceptionally mean and aggravated. I denied it in a very terse way and the oncologist immediately lowered the amount of steroid I was going to get. MAN, I'm glad I told my wife how I was feeling. I was mad as hell that they accused me of being enraged! On the pred., I still wanted to eat anything in sight but when they lower my pred and then have to raise it again, I get aggravated but am now aware of the rage and can control it. I am so ashamed, I wanted to take out the pastor for crying out loud. He is a regular friend outside of church but I have never told him but will some day.

[usrgbt]

I've experienced all of the exact things you mentioned,including the emotional ups and downs. Thank you for posting. I've tried to explain it to my wife but I let her read what you experienced and she has a better understanding now. Pred is definitely a double edged sword!

[D.B.]

Eating is one problem. I was a grazer before all of this happened. the worst part was the roid rage. I became aware of the rage when I started cancer treatment in 2006 and in the first week, I wanted to drop the pastor while in church because he said good morning and blessings and thanks for coming. I wanted to hit anyone who got near me. When asked by my oncologist how I did the first week of my treatment I said I was doing well, but the wife said he has been exceptionally mean and aggravated. I denied it in a very terse way and the oncologist immediately lowered the amount of steroid I was going to get. MAN, I'm glad I told my wife how I was feeling. I was mad as hell that they accused me of being enraged! On the pred., I still wanted to eat anything in sight but when they lower my pred and then have to raise it again, I get aggravated but am now aware of the rage and can control it. I am so ashamed, I wanted to take out the pastor for crying out loud. He is a regular friend outside of church but I have never told him but will some day.

dont be so hard on yourself. i, too, experience that rsge. noone can understsnd unless they have been through it. your body is suddenly not your own and that csn be hard to deal with. my BF kinda gets it now and calls me miss prednisone when i get "irratic" and mean (which is nothing like my drug free self)

[Tom]

DB thanks for the support and the understanding. Im past it now of course but I had on event with a truck driver who tooted his horn at me at red light because I wouldn't turn right on the red as I was going to pulmonary rehab. It just so happened that he was going to pick up a piece of equipment at the hospital construction site. I walked across the street and promptly told him that if he blows that horn at the wrong person they shove it you now where! There was a 10ft chainlink fence between us and he spouted some foul language and told his co worker that the dumb S.O.B. just sat at the red light and he could hae gone on it. I informed him that the law I may if the way is clear and not shall or will and I can sit the all day if I want and the light is red. I told him that fence and do the horn thing myself. I finally told myself that I have to walk away from this as there I stood with my o2 tank over my shoulder So that's just what I did. A couple days later I was telling my brother inlaw about it and he said his buddy Joe drives for that construction company and he was the only driver. So Joe got razzed by the BIL and when Joe found out who I was and was told my story of medical problems, he laughed and said he needs to get me a company T-SHIRT. The BIL said they laughed and when he told me how Joe reacted, it became funny. He said Je and I will hit it off good because he has a personality like mine where neither will stand down but will respect each others space. So we will get together sometime and laugh about it Joe and I. But your right, unless you have not experienced, you cant be told to relax or calm down with out getting irritated. But like I said, I recognize it now and I know how to deal with it. I think there is a bit of personality traits that can determine your level of tolerance with the steroid. I was bullied as a kid and early in life I was protected by other bigger kids and in some cases bullies themselves. About the 3rd grade I became the guy who bullied the bullies and looked after other bullied kid and in particular 2 severe downs syndrome kids. I found, or the bullies found that I had a mean streak and short fuse to go with it they left alone and those I stood by. One of the controls I found if I was on a pred increase was if I felt a little edgy I would tell my wife and then head out to the garage and read and build something or she would treat me with kid gloves. She is so understanding.

[Happy Camper]

I'm currently having my 1st flare up. MY ANCA is negative. Its never even been positive. My diagnoses was confirmed by open lung biopsy. My sed rate was a little higher then normal 18. I have nodules on both lungs, again. Hard to know when its active when my blood work basically remains the same. I didn't feel "normal" but I didn't really feel that sick either. LIttle burning of the eyes, lung pains, etc... Not sure how I'm going to tell when a flare is coming in the future. So frustrating!