Ups & Downs of Steroids… & REMISSION!

First off… have I told you how much I cannot stand being on steroids?  I cannot understand how something that transforms you so much into a person that you don’t even recognize when you look into the mirror can also help to save your life.  As evil as steroids are and as much as they have made my life a living hell for the past 9 months, they have also helped to save my kidneys.  Let me explain my love/hate relationship with those nasty, bitter tasting pills.

Dr. G increased me to a 60mg dosage of prednisone in late 2009 when my nearly 6 month long treatment of 20mg left my body laughing at such a low dose of the ‘roids.  My membranous glomerulonephritis had decided to act out as if it were a spoiled child used to getting what it wanted and it was time to show it who’s boss.  A couple of months of 60mg prednisone, and still no signs of improvement, Dr. G decided to get even more aggressive and increased my dosage of prednisone to 80mg.  I began my 80mg regimen and immediately collected just about every single side effect that prednisone offers.

On the 80mg prednisone regimen, my kidney lab work started to show signs of improvement.  I had bloodwork done every 2 weeks with follow up appointments every 3 weeks.  Every time I would visit Dr. G, he would apologize over and over for having me on such a high dosage of prednisone, as he knew that I was starting to become more and more impatient as the weight piled on.  I would go over my symptoms and side effects and he would listen, take notes and reassure me that this is normal for his lupus patients all of these things.  Reassurance or not, it still sucked big time.  I wanted to give up and start tapering.  I couldn’t handle the horrible side effects any longer and I was literally going crazy.

I brought my mother in with me for THE visit that I wanted to tell Dr. G that enough was enough.  It was time to start tapering the prednisone.  When my mother brought up the idea of tapering my steroids, Dr. G came at us gently, but firmly with the reply that we could give up and taper off the steroids but I would run the risk of facing dialysis.  Okay… that was enough to keep me and my mom both quiet.  Dr. G showed us a chart of my lab results, focusing mainly on C-3 and C-4 numbers.  The lab results had improved, however it was very slow going.  He said that it was time to switch from prednisone to the more pure form methylprednisolone.  He said that he hoped that the switch to methylprednisolone would speed up the improvement of my kidney function, thus getting me off steroids sooner.

The switch from prednisone to methylprednisolone was a breeze.  I simply stopped taking 80mg prednisone and started taking 64mg methylprednisolone the very next day.  There was no need to gradually introduce one medication while tapering the other one.  The side effects were the same, however, I did notice that the weight gain was slightly more than when on the predinsone.  Out of all the side effects, weight gain is the one that I have been having the hardest time dealing with.

Okay, lets fast forward… I’ve been on 64mg methylprednisolone for approximately 1 1/2 months and have my normal battery of lab work done on June 3rd.  I know that I will most likely not hear back about my results until Monday, as it was already Thursday and my most important lab work (what determines if my steroid dosage) takes several days to come back.  I sat on the porch with my husband that night and just cried and complained to him.  I told him, there is no way my lab results were going to be coming back with less than positive results.  I had to be near the end of this nightmare as I didn’t know how much more weight gain, sweating, pimples and hair growth my body could handle, not to mention my increased anger and depression about the whole situation.

It was 4:43pm on June 4th when I received a call from Sharon, my friend who is a nurse at my doctor’s office.  She had my lab test results from my drawing the day before.  Yes, I said from the day before… my test results always come back extremely quick!  Sharon said that Dr. G (my rheumatologist) had sent a note to the nursing station and labeled it as critical.  I was to IMMEDIATELY start tapering my methylprednisolone from 64mg to 56mg because my kidney function has FINALLY gotten on the right track!  My C-3 level is NORMAL and my C-4 level is GOOD ENOUGH to consider my lupus kidney disease in REMISSION!!!

As I was on the phone with Sharon, her telling me the awesome news and repeating it twice for me, I started laughing in excitement, and I just couldn’t help myself!  Sharon has been with me through thick and thin throughout the years, before she even worked at my doctor’s office, so this phone call was no regular nurse-to-patient call.  I wanted to reach through the phone and just hug her, jump up and down with her (haha, like I have the energy to do that right now!), and just party!  Well, instead, I got off the phone I text messaged Brent at work and my mom at work to tell them the awesome news and then told them I’d call later because I was going to take a shower.

I hopped in the shower and started to cry tears of happiness and joy.  I had the hardest time shaving my legs through the tears and had a million and one things running through my head.  As I scrubbed my pimple covered back I wondered how much longer it would be before they started to go away.  I thought, how much longer until I would be able to comfortably scrub my body… you know… without having so much weight in the way that it strains my back and wears me out.  How much longer do I have to go until I start to look like me again???  And then…. I started thinking about buying a car and going clothing shopping and getting chinese food.

I got out of the shower, daydreaming away about all of the things that I wanted/needed to buy when it hit me.  I did not win the lottery!  Oh my gosh, I started laughing to myself, feeling a bit silly and stupid.  I had gotten so excited about the news of being able to start tapering my steroids and the idea of being in remission that I felt as if I had won the jackpot.  Well, I did win the jackpot, but it was the health jackpot!  I will take the health jackpot any day over any amount of money (unless that money bought me remission!).  I cannot believe that for a moment I truly thought I had won all of this money.

So here I am today, going on my 3rd week of 56mg methylprednisolone and I have lost 5 lbs.  I am hoping and praying that the weight continues to come off at a steady pace.  Even more than weight loss, I am praying that I will be able to continue to taper the methylprednisolone every month and that my kidneys do not start to flare again.  Dr. G told me that if my C-3 and C-4 labs continue to do well at my next blood draw on June 30, I will be tapering another 8mg methylprednisolone (which is equivalent to 10mg prednisone).   Here I venture on, one day at a time, praying that this is the beginning of finding the old me again.