Monday, July 14, 2008

trying to try something new

This one was sent mid-July 2008.

Hello, friends -

So, just a quick update - Mielle did the IV steroid treatments for a little more than two months, and has improved. Her skin looks better (less red), she doesn't complain of leg pain too much anymore, and her strength and energy have been improving. At the same time, she did seem to "plateau" with that treatment - it was helpful, but she reached a point where it didn't seem to be pushing her forward anymore.

We've discontinued the IV steroid for now, and started her on another oral immunosuppressant drug called cyclosporine. Some patients have had good results using this drug in combination with methotrexate, which she has been taking from the start. She hates the taste of the new medicine, but she realizes it's better than going to Stanford and getting an IV!

We are also considering another new treatment which she would actually take as part of a study. It's another drug that is delivered intravenously, and if we do it it would probably happen in the fall. We are currently trying to taper her oral prednisone (the drug that makes her gain weight and makes her head "feel crazy") because if she does the trial, all her other meds need to stay constant, and her doctor doesn't want her to stay on such a high dose of oral steroid for so long. So it will take some time to gradually reduce that med, while watching carefully to make sure that the disease doesn't break through again as a result. If it does, we may need to re-evaluate. But, we've been reducing for a couple weeks already, and so far, so good.

We're on the books with an appointment in August with a specialist in Chicago, but we are checking with that doctor now to see if it's a good time for us to go - since we are kind of in the middle of trying something new. It might be better to wait until we have a clearer idea of whether it's working.

In happy news, some friends are helping organize a big yard sale to raise funds for us, and for JDM research. It is really taking off - growing by leaps and bounds - and the response from the community has been incredible, to say the least! We are also looking to get media coverage to raise awareness and right now we're pretty certain that the local paper, the Alameda Journal, will feature the story; we're still working on other outlets. We are lucky to have a lot of savvy friends who know how to make this stuff happen.

And THANK YOU to everyone who made a donation to Cure JM in Mielle's honor! It was so great to hear about donations coming in. She has fallen a little behind in making her art pieces for donors, but they will come eventually! And I've just been informed that Mielle has set the Cure JM record for the most donations made in her name. Hooray to everyone!

If you meant to make a donation, but forgot, or want to give more, here's the website again:

I want to set up a blog which I can update more regularly, so loved ones can just go there to read the latest news rather than waiting for email updates, but just haven't gotten to it. Maybe I'll try to have it in place by the time we do the yard sale (July 26) so that I can share pics, etc. more easily.

much love,

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