Sunday, July 13, 2008


This one was sent around mid-April 2008.

Hi,there -

I apologize that I haven't sent out a report on Mielle's condition for a while. I was having a hard time sitting down to do it, even when things were progressing well, because it's all so very difficult and complicated and emotional... and then, just after I finally wrote an update and was about to send, things changed.

After about 4-5 months of steady progress, Mielle is currently suffering a relapse. It's not as bad as it was in the beginning, but the muscle weakness and pain is definitely back.

Although we previously had a lot of confidence in her rheumatologist at Children's Hospital, we'd begun having doubts and now that she is having this setback, we felt he wasn't being responsive enough to her condition. We decided to seek a second opinion at Stanford. We took Mielle there yesterday, and have decided to move her under their care. We agree with their assessment that her relapse indicates a need for more aggressive treatment. She's still on the oral steroids, and a few weeks ago we switched to giving her the methotrexate (which also suppresses the immune system) weekly by injection. (Previously, she got that orally, as well).

In addition to this, she'll be having intravenous infusions of steroid, hopefully next week (IF she can get on the schedule). Initially, it will be a series of three infusions on consecutive days. Then one infusion every two weeks for 2-3 months. Then, spacing out to every 4 weeks, and so on.

We'd hoped we wouldn't have to go to this more invasive treatment, but the disease is obviously not being controlled with her current regime. I read that one dermatomyositis expert said something to the effect that if the oral steroids are a handgun in the fight against this disease, then the iv steroids are a bazooka. We need a bazooka.

"The experts" also indicate that early, aggressive treatment is key in achieving remission. The idea is to slam the, uh, heck out of the disease at the outset. If treatment is not aggressive enough, it can actually sort of "train" the immune system to continuously flare up again whenever the meds are tapered, and create a situation where the disease becomes more chronic. We don't want chronic, we want remission.

There are other things that can be tried, if this doesn't work as well as it needs to. But we are hoping this will be as extreme as we need to get.

Attached are recent pics. You can obviously see the physical changes that the steroid has created in MIelle, but I feel like you can also really feel the turmoil and struggle that is going on in her body, when you look at her photographs. It's heartbreaking. But her spirits are good. We still have some issues with the steroid-induced rage, etc. but it hasn't been nearly as bad as in the beginning. The second shot is with Uni, Mielle's rock-star friend who was kind enough to come over and spend time with her a while back.

Lucien is just dreamy, a little angel whom we all adore. He's doing a lot to help all of us through this hard time. We are grateful.

Please continue to keep us in your thoughts and prayers.

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