So, since my last post, it’s been so crazy! Phone calls back and forth between me, doctors office and insurance appeals board. No one can figure out why my IVIG was denied for round 2, when all agree that there’s no way anyone can know whether it’s working or not after 1 round. What a mess!

The insurance appeals board wanted me to go see my doctor, since it’s been 3 months since last visit. I told them that I have an appointment on August 22nd, and that I would’ve had at least 2 rounds done by that appointment. They said they wanted me to go see my doctor before they’d even consider approving me for more rounds of treatment. They called doctors office, who in turn called me and made me an appointment to come in and to get lab work done before I came in.

I went into the doctors today and saw my doctor. He thought this whole thing was crazy. He knew I wouldn’t be able to tell if it’s working for me. He even knew he wouldn’t be able to tell. He said he was going to recommend to the appeals board another 5 rounds, for a total of 6 rounds, and that by then we should have a good idea whether it was working or not. He asked me how I was doing otherwise, and I told him I’m no longer able to climb stairs or walk very far without my legs giving out. The myopathy in my arms and legs is so bad. It really sucks because I live in an upstairs apartment. He also took me off Plaquenil. I’ve been on it since 1995, and he doesn’t think it’s doing anything for me. It feels weird being off it, as I’ve been on it so long.

Right before 5pm, I got a call from the appeals board telling me everything had been approved. They were just waiting for the authorization number to give to my doctors office and the infusion center doing my infusions. I’m hoping everybody has everything by tomorrow, and that I get a call to set it all up for next week. I’m also hoping I’m still able to do them at home, instead of spending 8 hours at an infusion center.

So, that’s it. I’ll post another update as soon as I have everything set up!


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