Saturday, January 12, 2013

Another new med coming our way

This appointment went a little more like I expected last time would be.  We have three different rheumatologists working out of our clinic.  We have pretty consistently seen the one male doctor the for the past year, mostly because of the days that we have made our scheduling.  We don't play favorites- I think that they are all fantastic.  However, sometimes there are situations that I feel one really needs to see the doctor with the most experience for, or at least get a second set of eyes for. 

This past six weeks Emily just went downhill.  No, it wasn't nearly as bad as 2010 when she was too tired to roll over in bed and crawling to the bathroom, but it was the worst flare that she's had in a while as far as joints and muscles are concerned.  I am just happy that we got her throat stuff under control before this flare hit.  Every day for the past six weeks something new has hurt.  The pain in her hands- most notably her thumbs- has been the most significant.  One of our occupational therapists had ordered her new splints, and started wrapping her in KT tape to give her added support.  She has still felt pain badly enough to want to rip off her thumbs and toes.  Then her ankle, thighs, knee, shoulders, and wrists decided to kick in, with the occasional shout out from her hips.  The month was miserable for her. 

I had hoped that we would see the head doctor this time, but I didn't expect it because she has been doing a lot of research related work.  I was so thrilled to see her come our way!  I have missed her.  :)  She's just so sweet and caring.  (They all are, really.)  She agreed immediately that Orencia isn't cutting it.  We are going to give Actemra a try.  I had expected this before we started Orencia, honestly.  Actemra was first approved for the Still's Disease (SJIA) kids; recently it was proven effective and approved for poly JA kids.  Since Emily is a mix of things, I am hoping that this works well.  She should be set to start it in two weeks.

The hands are posing more than the usual concern.  We had an MRI scheduled for her hands, but they said that it would be 1 A.M.- a day and a half after the order was sent to them.  We stayed all day today waiting for it, but we just couldn't wait for them anymore.  We're already changing meds so it won't affect treatment; they just wanted to see why they are such a mess.  Our other doc says that her hands are much more scleroderma now than arthritis.  Not what I wanted to hear.  It makes sense, I know.  I would just be more comfortable thinking it was "just" arthritis.  

One thing that I found interesting through this is that her labs look awesome.  You would think that as much pain as she is in, as much stiffness as she has, as much as the rash is coming back out in her knees, elbows and around her eyes, her labs don't show it at all.  I asked the doctor if it was just because we were two weeks later on the IViG this time than usual, and he said likely so.  But one would think her labs would show it.  No elevated inflammatory markers, no elevated muscle enzymes.  Weird.  Awesome, but weird.  This is good to know for future reference.  I know that many adult rheumies assume that if your labs don't show inflammation, you don't have any. 

So, we go back in two weeks to try Actemra, and we hope that the MRI works out in the near future.  And for now, I am going to pass out in my own bed.  I have to be at work in a few hours.  I'll keep ya'll posted!

No comments:

Post a Comment