I had an uneventful appointment with my nephrologist yesterday, and thankfully have no bad news to report, other than the fact that I think their scale has something against me.
I'm going to try to explain what's going on wiht the meds, and why this is all so terribly annoying to me right now. I start taking the new drug, cyclosporine, on January 24th, at 100mg 2x/day, which is pretty much the base level to start out with. At this point, it's all just a crap shoot because there is no approved therapy for what I have (FSGS). Now I have a feeling of what lab rats go through (well, almost :()) Anyway, because of this drug, I have to get weekly and bi-weekly blood tests run. Ever week they check my cyclosporine level, trying to find my "trough" level. So, I have to make sure that I have the blood test done 11 1/2 to 12 hours after my last dose, so that makes an appointment for me every Monday morning at 8:30. My doctor is looking for my trough level to be somewhere between 100 and 200 mg, which is considered "therapeutic levels". The first results came back and my level was <50 (not so good) so my neph upped my dose to 123 mg 2x/day. The last results show ~53, which is clearly still not where we want to be, so now I'm up to 150mg 2x/day. My next blood test is Monday, so we'll see if it's having any effect. I imagine it's going to go like this for a few more weeks until we find the right dose, but hopefully we can keep it low. There's some toxicity concerns with this drug, in that it can actually do some damage to my liver and increase my blood pressure. So, I also have a liver panel done every 2 weeks, and check my blood pressure fairly regularly right now. I'm on a blood pressure med as well that's had some success in lowering protein spillage, but because my blood pressure has alwasy been so low, my neph doesn't want to increase my dose too much for fear of me passing out somewhere along the way (nice, right?). Plus, increased cyclosporing doses = increased risk of side effects = very unhappy me.
Ok, so that's the lowdown. I'm frustrated, truly frustrated at this point. I'm still weaning down the steroids....I'm at 25 mg a day, which is a HUGE step down from 70mg, but not enough for any of these crappy side effects to subside yet. Scary thing is that I don't think my weight budged until I went off of them completely the last time. Since I'm going to have to be on a maintenance level of prednisone for the next couple of years, this FREAKS ME OUT!!!! My neph said that he's going to try to get me to 7.5 mg, so maybe it'll be enough. I'm keeping my fingers crossed. He said that I have the metabolism of a bull (this said in regards to the fact that I'm metabolizing the cyclosporine too well), and I told him that's not what his scale says. What's frustrating is that, since the beginning of January, I've been working out 4-5 days a week, and watching what I eat, and that number on the scale is still going up. Now, I wouldn't say I've gone on a diet or anything, but I definitely feel that I've been more conscious of what I've been eating. It's hard to know if I'm fighting prednisone or if I'm just going to have to work harder. I can see some differences...I definitely know that I'm building muscle in my legs because my jeans fit differently, and I can see some change in my arms, but everything is still buried under a layer of fat. It's frustrating and discouraging sometimes.
I want so badly to go buy new clothes, but it doesn't make sense if I plan on losing this weight, so I keep holding out. But seriously, how long is this going to take? I know it's good that I'm starting now, and I'll have a leg up when I'm down to the lowest level, but man it would be nice to see some results on the scale. We've planned out trip to Sweden for the summer, and I don't want to look/feel this way while I'm there. We're renting a cottage on the beach for midsummer, and I'm soooo excited about it!
I try not to let it all get to me too much, but some days are harder than others. It doesn't help that I've been sick with this blasted cold for the last week or so. I keep forgetting how much I have to watch this stuff. My neph kept asking me about my cold yesterday...how long have I had it, am I coughing anything up, any fevers??? Guess he wants to make sure it doesn't progress to pneumonia or anything, which is something I NEVER would've thought about. I do notice how much more often I get sick and how long it takes to get better. And I'm so inexplicably tired...I mean, I know I don't get enough sleep, but even on the days where I do I neve feel rested. I've already used so many sick days because of Izzy this year so far that I have to be careful. My intermittent leave is up on Sunday, but I've resubitted another request to extend it. Keep your fingers crossed that it doesn't take another 2 months to get this one approved!
OMG...one more thing. These hot flashes can go. Seriously. I'm done with it all. I swear I can work up a sweat just typing right now. It's ridiculous, disgusting and miserable. I have so much empathy for menopausal women everywhere (and I absolutely dread it myself if this is one of the side effects). And sadly, there is nothing that can be done except for a cold shower...not so convenient right now, is it? And I've ALWAYS been the type of person to be cold. It's terribly strange for me to be wearing short-sleeved shirts to work in the winter, but that's exactly what's had to happen. Ahhh...all those sweaters I can't wear because they either don't fit or they make me a sweaty piggie. nice.
Ok, I think I've vented enough to feel better now. Sometimes I just gotta get it out.