I’ve totally neglected this blog, and I need to stop doing that. My problem is that I like to write posts that are somehow useful, and not just complaints or reposts of information that is better found elsewhere. However, I suppose that is how information gets in the hands of the right folks, eventually. Writing is also an easy habit to break, if you get preoccupied with other things.

I will write more on this later, but I wanted to at least get the ball rolling on this topic. We have had a lot of trouble over the last six months with my wife’s lupus medication. She stopped the Cellcept because she was having headaches and problems with acid reflux. Then she moved on to Imuran which we thought was fine, but ended up creating flu-like symptoms that took forever to tie back to the Imuran. We seriously thought she was just getting the stomach flu every few weeks. Very soon after she stopped the Imuran, the vomiting and nausea stopped and everything was fine, except that her counts were all messed up again because she wasn’t taking any immunosuppressants.

So what do we end up going back to?

That’s right, she was put back on Cellcept, which lasted about a month before she couldn’t take the headaches anymore.

There’s got to be something else. Methotrexate was a total disaster, so that’s out. Cyclophosphamide is another option that hasn’t really been discussed. I assume there’s a reason for that. I will have to ask my wife to check with her doctor on that one. But wait, isn’t there some new drug? We keep hearing about Benlysta, but we don’t seem to have any access to it.