May 27, 2009

Bad News....


Ayla's lab work came back today and it wasn't good at all. This is the first time we have had it drawn since she has been off of her steroids (prednisone). While she was on the prednisone, her sed rate was normal which is 0-10. We had high hopes that it would still be normal today. As it turned out, that was not the case, her sed rate today was 69. Just a reminder, the sed rate is an inflammation marker that is used (in our case) to see how well the arthritis is being controlled. With a high result of 69, it is obviously not well controlled as of now.

Of course we have seen a difference with her being on prednisone and now that she is off, but it is always in the back of your mind, "well maybe she is not that bad". I guess denial still creeps in every once in a while.

The biggest difference we have seen in the last couple of weeks is her not being able to turn her head to the right. Her left knee and right elbow are still swollen as well. She also has arthritis in her jaw that has caused her to have TMJ and that is still pretty noticeable. Since she has been on injectable Methotrexate for a couple of months now I am almost certain that her Rheumatologist will want to start her on Enbrel, which is another injection. We have talked about it in the past so it is not a complete shock. Of course I am not happy with the idea, but I have had time to prepare myself...somewhat...Anywho, we are driving 3 1/2 hours on Friday to see her Pediatric Rheumatologist, I will keep everyone updated on what our next course of treatment will be.

1 comment:

Jacob's Mom said...

sorry to hear the news Lesli! I think a lot of the kids JRA is controlled pretty quickly on the pred. As you know they can't stay on it very long though. It does sound like she needs to move ahead with the other class of meds. When they are used with the MTX they work great!I was a wreck when Jacob started on Humira, but it just works so amazingly well it is so worth it. She will be under control quickly. Sorry again to hear she is still struggling.