We had already pretty much decided that Orencia wasn't really working for Emily, however I wasn't expecting our doctor to suggest just dropping it and hoping for the best. Granted, we would be keeping the Rituxan, which she feels is actually helping a lot, but still... I mulled that over for a little while, and decided that with her recent daily thumb and toe pain, that is probably not a good idea. She has told me that they sometimes hurt so badly that she wants to rip them off. I totally love our rheumy's- ALL of them- and I think this was the first time the question seemed completely not aggressive.
The night went by uneventfully, with no visit from the doctors until just as I was about to go down the hall to take Zach to his appointment. Just as we were starting off, one of the other rheumies came over to see us. She asked me how I felt about dropping the Orencia, and I told her my fears about the thumbs and toes. She told me that she was not fond of the idea, enough to have mentioned it to the head of the department. This is part of the reason that I love our team- they actually communicate. I like our other option much better- instead of dropping Orencia, we will spread it out to every six weeks. She also asked when our last Prednisone decrease was. Ummm... long enough ago that I can't remember when. Well, permission to drop 1/2 of a milligram... granted! :) That had me over the moon! I was so excited! No, it isn't a huge drop, but it is huge to us!
So, I left our room extremely happy, expecting an easy appointment for Zach and then on to home. Not so much. While he looks great, our doc noticed that his toes were swollen. And they hurt. And his back has an arthritis spot. Which usually means Spondylitis in a person with Psoriatic Arthritis. So, yeah. Not thrilled. I was very glad that his appointment was today and not yesterday. I like thinking our appointments over on the way home. It's harder to think straight when they keep talking and giggling. It just hurts your heart to hear these things. This is not what you want for your kids. I had really hoped that Zach's would be easier to deal with because we caught it early. He responded so well to Enbrel at first. I really thought that this would easy. He's HLA-B17 positive- that is a psoriasis marker, and it often means a more mild form of arthritis, if I remember right. I thought we were clear. So far, it doesn't bother him too much, so it obviously isn't really bad right now. He has complained of his back once or twice. He complains of the feet often, and on Halloween it was the ankles. No changes in meds yet- we are to just keep an eye out and see what happens. We will go back in 3 months, but call if anything changes.
On a sweeter note, we were asked by one of the rheumies if we were going to be at the Jingle Bell Walk. :) We don't go to that event, only because it is so cold, but I thought it was cute that they were thinking about it, especially since our walk is so far away from the hospital. I really do love our doctors. But I would like to put them all out of business by finding a cure, please. Then we could all just hang out and talk medicine without actually having any medical crises ourselves. On the bright side, we don't have to go back for six weeks. Woot to that!
Oh, and we got a dog! We swore that we were NOT getting a puppy, and we were NOT getting a big dog. You know what they say about the best laid plans, right? We have a shepherd/ husky/ lab mix. He is three months old. We were both thinking that he was six months old, but no, he's three months. His name is Brody, but I swear I may change it to Bitey. He is definitely like a baby, and so cute! Assuming I can get his immunizations tomorrow, we should be good to start him in training classes tomorrow! I am so hoping. We need to get him to stop biting, and so far the tips that we have found on YouTube are not working. He is good with the younger kids; it's just me, Kevin and poor Ash. He especially loves to bite Ash! She'll be just sitting on the couch texting, and he comes up and starts biting her. Poor kid! PetSmart said that they can get him close to therapy dog in training. I can't wait to start! I'll keep ya'll posted!
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