Friday, August 22, 2008


So, I haven't posted anything in awhile. My life has been pretty crazy and i've experienced A LOT of change in the past few months. As anyone with Lupus knows, stress is not good for us and for me, change = stress. My relationshiop with the boyfriend that i've mentioned in previous postings ended after six and a half years together. We had also been living together so the break-up entailed a new apartment for me as well. The song, "Breaking Up is Hard to Do" could not be more accurate. I feel somewhat like the world I knew has been forever altered.

I also started a new job at about the same time we were breaking up - more stress for sure, but I really, really love my job - something I have not felt in awhile. I now walk to work each morning and just not having to deal with a morning commute has truly brightened my life and taken away some work-related stress.

Just to add a little bit more stress, I decided to adopt a puppy to help fill the void left by my ex-boyfriend. I've also ALWAYS wanted a dog. She's AMAZING but is a lot of work. I feel like a new mother, constantly without sleep and making sure she doesn't eat nails or chew on electrical cords - but maybe new mothers don't have to deal with the electrical cord thing :)

In health related news - I had a pretty shitty visit with my nephrologist on Monday. None of the eleven toxic medications I'm currently taking each day seem to be effective in halting my nephritis. My protein loss levels are the same as the day I started taking everything. I'm currently taking two high blood pressure medications, 30 mg of prednisone, 2000 mg of Cellcept, a diuretic, and then all of the usual Lupus meds like plaquenil, etc. My nephrologist seemed really discouraged on our last visit - I know because he told me not to be discouraged.

He's tapering down to 10 mg of prednisone and starting me on something called Prograf - another anti-rejection immunosuppresant. I'm taking it in conjunction with the Cellcept and everything else. The side-effects don't sound so great, but I'd be really like to hear about someone else's experience with Prograf. He said that if that doesn't work, our next step is to try Rituxan - again, side-effects sound HORRIBLE. Does anyone have any experience with that?

When I began seeing the nephrologist, he said my chances of having complete kidney failure were one in ten. On my last visit, he said my chances are now down to one in three. I'm really scared and I don't want to take all of this toxic medication, especially if I'm just going to continue to decline in health. I don't know. Has anyone out there had a similar experience with lupus nephritis? I know I can't know the future, but it would be nice to have something to go on in terms of what to expect.

That's all for now.