My worst fear has become my reality. Back in July when I was contemplating what to do with my kidney disease, my absolute worst fear was that the treatment wouldn't work, and I'd end up in the same place only 6 months later, with 6 months of wasted time behind me. That's where I sit today, 1 year later. I did 6 months of prednisone. I gained 30 pounds (putting me above the IVF weight I need to return to). I missed a lot of work and felt miserable. When I first stopped the treatment things were looking good. My creatinine and urinary protein had both decreased dramatically. Today, while my creatinine is still OK, (it went from .95 - 1.03, which is within the margine of error for the test) my protein has gone from 1670 to 5700. Proteinuria in this range is called Nephrotic Syndrome, and increases risks during pregnancy. So now I'm faced with choices again:

1. Take anti-rejection drugs. These increase the incidence of cancer, and aren't proven to really have a benefit. Other side effects include hair loss and complete immuno-suppression. They cannot be taken during pregnancy
2. ACE inhibitors. These did not seem to decrease my protein by much the last time I was on them, and my creatinine still increased. They cannot be taken during pregnancy.
3. More Prednisone. This did help while I was on it. I was on an extremely high dose, but only for 9 days out of the 6 month period. The rest of the time I was on 35mg every other day. Protein decreased by 3000mg. I probably can't take the IV dose again, but this is the treatment of choice for nephrotic syndrome. I could try it in a long-term smaller dose. This may or may not help. It greatly suppresses the immune system. It is pregnancy category B, and the benefits of taking it will probably outweigh the risks, since proteinuria can effect a fetus as well.
4. IVIG therapy. This is an extremely expensive therapy requiring 6 IV doses of immunoglobulin G given over 3-6 months 12 hours at a time. This therapy has not been studied well, but 1 study indicated a great improvement in 10/11 patients. It is for people with severe/progressive IGA. This medicine is actually given to women with recurrent pregnancy losses to prevent miscarriage. Side effects are very minimal.

These are my options!?? 1 & 2 are out. I want to continue to persue a pregnancy, and I do not want to take anything that could cause cancer. Not yet, anyway. I'm excited about option 4's potential and am interested to see what the Dr. says. I'm not psyched about #3, but I know that it helped last time, and I have a feeling that a lower dose would still provide some benefit. All in all, I responded well last time, and I feel that with a careful eye on my diet I can keep from gaining weight.

My high risk OB seemed very concerned about beginning a pregnancy with nephrotic syndrome, so I do want to do something to help. The good side is that my creatinine is still good and my BP isn't high, and pregnancies with kidney disease have a "Favorable outcome" with creatinine under 1.4 and no high blood pressure. The proteinuria does add another factor, but without the high blood pressure my outlook is still good. Still, I want to get my proteinuria as low as possible, so I feel I have to try something. I am hoping my doctor will go for one of the treatments I want, though I know he wants to push Cellcept, the anti-rejection drug. I'm just not at a point where I want to take those risks, and the course is for over a year, which means no baby for over a year, and if it didn't work, I might not have a chance at all.

Honestly, I'm devastated. I have no interest in being at work. I want to go home and watch TV all day. I don't have a choice but to be here and do my best, but it's hard. I don't want my kidneys to fail and I want to have a baby. This is a very trying time for me... especially when I thought I was ok. I thought my kidneys might really be getting better. I was so scared to get my results and this is why. I just hope we can do something and I can bring a healthy baby into the world and remain healthy myself.