Rebel

I'm going rouge. I went ahead and dropped my prednisone dose to 30 mg as of last Sunday. I just couldn't find any good reason, in all my research & talking to people, why I needed to stay on 40mg for 6 weeks. I looked on that website I found when first was diagnosed (uptodate.com) and it confirmed that my taper schedule was way slow. It also said the faster you respond the faster your taper can be; they recommend 2-3 months, and/or a 1/3 reduction every 2-3 weeks.

So I'm taking matters into my own hands and reducing 10mg every 3ish weeks (which is still slow). Haven't decided how I'll tell dr. B yet. I don't even see her till June 8th.

This rebellious behavior is not about me struggling so bad on the drug that I can't handle it. Aside from the weight gain, which is annoying, I'm doing ok. But at this point, with me being in remission, I have to consider the long term side effects of being on high doses of Pred. It's just not necessary to do that to my body and I don't feel good about it.

I do, however, feel good about my decision. I feel informed & in control of my health. But I'm scared to tell my doc because I'm a pleaser by nature, especially with so-called "authority figures." We'll see if I can be brave come June 8th.

My next 24-hour urine is scheduled for May 29th. A few days after that I'll drop to 20mg. Wish me luck!!

More numbers

I finally got a call about the lab results from my 24-Hour urine & lab work last week.  My creantanine is down to .87, which is good.  My GFR is 90, which is also good, & my protein is down to 85g which is awesome.  But I'm super depressed because I was hoping to convince her to drop my dose sooner.  But no.  I have to stay on 40mg for 3 more weeks.

So my 6 week mark on 40mg is May 31st, but of course Dr. B is out of the office that week & can't see me CLEAR until June 8th.  So I've decided to drop myself to 20mg on May 31st.  She'll probably not be so happy with me about that but I don't freaking care.  I really like her but I'm sick of how often she is out of the office & unavailable for appointments.  A week may not be a big deal to her but its like 2 lbs for me.

Speaking of... definitely the most prominent symptom I'm having is the weight.  I've gained 12 lbs in 7 weeks.  I am quickly growing out of my clothes.  Of course this is happening right at the beginning of summer, which makes it harder to layer & hide the fat.  I've never been this big except right after I have a baby.  By the time I'm finally off this drug, at this rate, I'll be bigger than I've ever been NOT pregnant.  Its seriously so depressing.

I've luckily been able to sleep better since dropping down from 60mg but the other side of that same coin is that I have really low energy, especially in the afternoon & evenings.

Another lovely physical side effect I'm experiencing is hair growth on my face.  Its growing in blond (thank goodness) but its still awful.  I don't want to get my face waxed because then I'll always have to.  But I might not be left with a choice.  When I went to get my eyebrows waxed, the not-so-tactful Vietnamese salon worker informed me that I need my lip & chin waxed.  Thanks lady.

The most depressing part about all of this is that my actual kidney disease isn't what's causing the problem right now.  That's in remission.  All of this crap is from this damn drug.