I've been dealing with this disease for a little over two years. I've been treated by my Rheumatologist now since December 2012. Mainly because my Pulmonary Dr. on post referred me to her.
My last flare was in August 2013 and took Solmederol infusions for three consecutive days before being started on a maintainence dose of Rituxan. Saw Rheumy in early December and was still having some issues so she had me do another maintainence dose as a precaution. One on Dec.26 2013 and the second dose was Jan. 9 2014. I should mention that I've been off Prednisone since the first week of November 2013.
Every time I'm taken off the Prednisone I experience horrific joint pain. Mostly in my hands and feet. From what I've read on this forum it seems a lot of us experience this.
In November I begain having issues with my lower back. I've had a history of lower back issues since my 30's. This episode in November was by far the worst that I've ever experienced. I had muscle spasms that locked my lower back up like it was a piece of armor. Long story short, Had MRI and referred to neurologist. I have four bulging disks from L1 - L5, severe scoliosis, and osteoarthritis. I took an MRI from '08 just as a reference to the MRI done Dec. '13. The thinning of the vertabrae was the most startling.....most likely from years of heavy lifting and of course the long term, high dose steriod. I'm currently in PT twice a week.

I have to be honest in saying that my Rheumy hasn't been forthcoming in giving me technical information on my labs. Other than telling me my Anca level. Which is why I'm posting today because I was so angry and upset when leaving her office this past Tuesday that I was ready to never go back and see her.
I'm sitting there in her office and I was about to ask her if there could be anything else going on to cause the joint pain. I've already test neg. for RA. She literally snapped at me by saying "No." Several moments of silence pass and then she is smiling and telling me that my anca is 148. Compared to last November at 190 that's a very good number. So good in fact that I will do labs again in May and when I see her in May if the number is the same, then she will give me an open date labs sheet and she will be done with me. In other words.....don't come back unless you're sick.

My question is....am I wrong in being appalled that she would consider 148 a low number? Or that she wouldn't even say the word remission?? I just feel like after nearly a year and a half, she can't get the disease under control and now doesn't want to have to deal with me.

Sorry for ranting. I'm just really lost as to why this Dr. feels that she shouldn't have to see me unless I get sick. I still see my Pulmonary Dr. every two months so that he can keep tabs and see how I am doing. And he's seen me since I was first diagnosed.

Thank you for any feed back.