I got my latest test results back, and while there's been improvement (5800 mg/24hr to 4900 mg/24hr), it's not enough. So my doctor and I've decided to stop the cyclosporine at this time. What's great about this is that there's no weaning, so I took my last dose Friday morning. Hopefully this means that the tiredness and headaches will go away (but MAN, did I have a whopper of a headache Sunday/Monday!).
So, what does this mean? Well, I've got 3 options at this point:
1. Discontinue cyclosporine (which I've already done)
2. Start taking Cellcept (another drug with MUCH less severe side effects, but also little chance of actually working...there isn't a lot of data to back it up. It's more of a 3rd line of defense, after prednisone and cyclosporine).
3. Take a break from all meds, talk to Joacim, and figure out what we want to do, then discuss with my neph at my appointment on the 27th.
Yeah, not such great options, is it? And my biggest concern, in this whole thing at this time, is being able to have another baby. When I got pregnant with Izzy, my protein was well controlled and in the normal range, with no residual issues from the disease or the meds. THIS time, however, is a different story. Since we can't get my protein down, my neph is not recommending me getting pregnant. When I asked him if he was concerned about me or about the baby, his response was, "Yes". Ok, that hits hard. I told him that I feel like he's telling me that I won't be able to have any more kids and that we're just going to wait until my kidneys fail, and he pretty much agreed. Of course, I could stay like this for quite a long time. My kidneys, at this point, still function perfectly. Unfortunately, there are long-term effects with the protein loss I'm experiencing...long story short, it's not going to get better.
I'm not ready for another baby..not quite yet, but I know it's coming. I want Izzy to have a sibling. I think Joacim and I are great parents, and I think we've got a lot more to give, and it terrifies me that the option may be taken away from us.
From what I understand, I'd be at a higher risk for pre-eclampsia (which I was with Izzy, but never had any issues), but I'm not sure what else. In regards to the baby, there's concerns of low birth weight due to malnutrition from my protein loss and premature delivery. Now, granted, this is what I've gleaned from my very limited reading.
I've got an appt. with my ob/gyn on Thursday, and I'll use this opportunity to discuss with him what my options are. I mean, if my ob/gyn is supportive, then I'm confident that my neph will be. Of course, I don't want to do anything crazy and irresponsible, but I want to know what all of my options are. I've not given up hope yet.