Friday, September 30, 2011

Clinic Check in Sept. 2011

Our clinic check-in went pretty good.  Doctors were running behind.  We were greeted by a new fellow who only knew of Gary by his name.  She didn't introduce herself.  She just began chatting.  I have to admit I wasn't in the mood to chat it up with a new doctor.  But I do like to hear myself talk.  Especially about a subject a know extensively.  As I updated her on the latest and greatest, she responded with, "I know you have struggled to get this under control."    It struck me I am don't favor the speaking with the fellows first.  I often tell them things, then forget to repeat them to our Doctor when she comes in.  Yesterday seemed rushed and chaotic.  I think it was because they were running behind, I needed to get back to work, and Gary was in no mood.  The fellow began the strength test.  As Dr. E entered she took over with the tricks she had established with him. He still was not cooperating which is frustrating.  I get distracted by his behavior, rather then going over the important things.  There were a few spots on his skin that I discussed with her.  She wasn't concerned.  The fellow repeated a few times about how difficult his case was and is.  We talked about his hoarse voice.  I think we are satisfied with trying to get it to resolve itself.  I guess.  Capillaries on his fingers,  a few fingers are almost normal.  I few are far from it.  I asked the doctor if that is common.  She said  yes.  One finger ok, the next not.  Don't bother with the why.  Strength is near 100%.  Gary was saying ouch here and there with his leg strength tests.  I told them I don't think that is a true pain.  Gary was giving there chains a yank.

Our doctor wasn't as excited as I was.  Pleased yes, but seemed cautious.  I am glad for this.  I appreciate her conservative approach.  Our first wean started last month.  The wean off was her.  Instead of every 4 weeks, we are not checking in every six weeks.  Our new taper is the small amount of steroid we are on.  We are going to rock that between 1/2 ml and 1 ml for the next six weeks.  In two weeks we have IVIG and lab checks.  She will also be checking T-Cells.  If they are back, we will run Rituxan again.   I felt like her head was full yesterday.  She seemed distracted and very busy.  She always expresses her confidence in me.  How they trust me and how in tune I am with him.  I appreciate that, but there is an immense fear.

So here we go with continuing the great taper.  We tried this taper last year.  It didn't last long.  Do things feel different this time.  I am not sure.  I think they do.  With methotrexate, cellcept, tacrolimus, enbrel, ivig, and rituxan and plaquenal on our side, just maybe.

Protected from JDM.  I make him wear this everywhere.  Protects him from injury and germs.  Just kidding.

1 comment:

  1. Hi Erika,
    Hoping and praying this tapering goes smoothly and you can get him off the prednisone. When I tapered off of preds it was such a slooooow process. My doc is very cautious and he made me taper .5 ml every month. I thought it would take forever to get off the stuff, but it worked!

    Praying and praying for Gary.