New Doctor, New Drug

Yesterday was my appointment with my new doc, Dr. R.  He was really nice.  I really like the Baylor Clinic where I saw him-- everything moved quickly & everyone was super nice.  That means a lot to me.  Its almost more important to me that I like the office staff than it is if I like the doctor.  Almost.  Anyhow, Dr. R didn't say anything new or mind blowing-- just stuff I already knew; whatever the research says.

To back up to yesterday morning, I got my latest results from my 24-hour urine collection-- I'm back up to spilling 3 GRAMS of protein.  WOAH.  I totally didn't expect that, especially since I'm back on a higher dose of prednisone.  But it was good to have that information going into my appointment because I am sure the prednisone isn't working like it did the first time around.  My only other option with the prednisone, besides to get off of it, is to go back up to 60mg, where I started in March, and start over.  Uh, no thanks.

So the next drug you try is called Cyclosporine.  Its the same drug most transplant patients are on.  It totally kills your immune system, so that sucks.  But it seems to work for a lot of people with FSGS.  The benefits, as compared to prednisone, are that there are fewer side effects.  I should be able to loose the weight I've gained, won't get moon face, mood swings, hormonal changes, etc... but Cyclosporine is known to mess with hair growth. Some have reported loosing hair & a lot have a reported more hair growing on face, arms, back {awesome}.  It also can cause severe tremors in your hands, GI problems (burning in your stomach) & weird tingling sensations in your hands & feet.  There are a lot of other reported side effects but those seem to be the main ones.

Dr. R said once you go on it, you stay on it for a year or two.  This is bad because I really want to have another baby & while there are many people who have had babies while on Cyclosporine, its considered a "Class C" drug for pregnancy, which means its not desirable to take it while pregnant.  It does cross the placenta.  I've read a bunch of studies & the findings are that it doesn't cause birth defects but can contribute to low birth weight & premature birth.  Prednisone is only slightly safer for pregnancy so I wouldn't necessarily want to be one that either.

I'll see Dr. A (my high-risk OBGYN) on November 8th & go back to see Dr. R on Nov. 13th.  So by then, I'll be completely off prednisone & I'll have been on Cyclo for 2 months, so we'll be able to see what's what.  It'll be very interesting to see what Dr. A will say.  I was really hoping to be in remission & off drugs completely when I see her but that's clearly not happening.  I'm sure Dr. A won't be thrilled about me wanting another baby.

So now to how I'm feeling... I've noticed a pattern in all of this.  Whenever I get bad lab results, a change in medication, doc appointments, etc... I go through a day where I'm ticked off all over again that I have this freaking disease.  I mean seriously... I'm 30 years old.  I eat healthier than most.  I exercise 6 days a week.  I just want to be HEALTHY!  This is a chronic illness; one I'll deal with forever.  There's a chance I could have a great life (health wise) but it seems like I probably won't.  It'll probably get worse.  Regardless of what the doctors say, the pattern seems to be that if prednisone doesn't work, you start on this list of drugs & treatments & never really get off that train.  This all just really blows.  I'm young.  I should be able to just have another baby if I want one & can afford one.  I shouldn't have a pill box like some 70 year old.  Its ridiculous.

I'm still kind of in that ticked off mode... I'll be over it soon.  I have a lot of anxiety about starting Cyclo but at the same time, I'm really REALLY excited to get off prednisone.  It'll take about 5 weeks.  CAN'T FREAKING WAIT.  It better be worth it.