No hope for me, thanks


We found out for sure today that the Enbrel isn’t working for Marty. Major downer for sure, but the worst thing I heard today hasn’t even hit home yet.

Before I even had the chance to give him the bad news, he told me he wanted to go back to the Kineret. We discussed it for a few minutes before I told him the rheumatologist also wants him to switch back. He said part of the reason he didn’t like Enbrel is that it gives him hope.

After a few more minutes of discussion I found out the source of the problem. He doesn’t like being disappointed when he doesn’t feel better like everyone had hoped. My teenage son would rather stick with a treatment that sort of works than to risk being let down thinking it might get better but it doesn’t. How sad is that?

I am waiting on a callback from the nurse who had instructions to work us in ASAP. With a little luck that will be before the rheumatologist wants Marty to actually start back on the Kineret.

I’ve had enough. I’m just numb.

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About juvenilearthritis

A single mom raising a son with juvenile arthritis and a daughter with a big heart.
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2 Responses to No hope for me, thanks

  1. Anna says:

    Stumbled upon your blog from twitter.

    Oh, that’s so sad. 😦 Did you hear back?

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