Round Two

I was pretty bummed the other week when I started noticing a relapse in the works.  As I said, I was pretending to live in some alternate reality where none of this mess had ever happened.  I had stopped being strict with my sodium and sugar especially over the holidays.  So then when I shot up to over 600mg of protein loss in a matter of 10 days, it was back to reality.

I started back on 6mg Prograff and 40mg prednisone on the 15th, and by the time I did labs at Mayo on the 23rd, my protein had already dropped back to 50mg for a 24hr clearance.  That would be 15mg LESS THAN my clearance during July.  WTH!?  I talked with Dr F on Friday at my appointment.  It was good timing as it was a 6 month follow up from the summer.  He was pretty excited that I'd shown such rapid improvement, and ok...so was I!

So he now thinks my FSGS is behaving more like MCD or steroid sensitive FSGS.  I guess that means my FSGS has multiple personalities.  Last year around this time we discovered that it was steroid resistant when the little improvement I'd shown following acute kidney failure came to a screeching halt and reversed.  That sent me down the path of my kitchen sink therapy of plasmapharesis, Prograff, Cellcept, and Acthar while tapering off the prednisone.  Dr F at Mayo and Dr K here both think that I caught this relapse super early, and this is why we whipped it back into shape so quickly.  Score one for my obsessive compulsive dipstick checking, shinbone pressing nature!

I am back in full remission.  Just like that.  Nine days, and it turned itself around again.  This time without having to deal with the catheters and craziness.  I have a new taper plan, and Dr F thinks it is likely I will relapse again when I reach 2mg of Prograff, but he would like to try one more time.  I'm coming off the Prednisone at 10mg per week and then 2.5mg per week until I reach 0.  If I'm still at negative protein loss, I'm going to hold steady on full dose Prograff for two months and then taper again at 1mg/month until I reach 4mg.  This is 1mg more than the lowest dose that held me in remission.  By this time I will be headed back to Mayo for a 6 month checkup.  Dr F is going to make a decision at that time concerning continuing to taper. It's not optimal to stay on the Prograff long term.  It can become nephrotoxic which would sort of defeat the purpose of taking it in the first place.  Talk about an oxy"moronic" circumstance.

There is a drug called Rituxan that has been shown to hold people with both MCD and steroid sensative FSGS in remission long term without the need for additional medication.  This is the route that Dr F feels we are headed toward to keep me there.  I have a lot of reading and research to do on the uses and side effects of this drug, but I do have a friend who has already done the two infusions with very positive results and little to no side effects.  For right now, this is on the horizon but not in my immediate future, so I'm going to sit back and relax, enjoy the reprieve from my setback, and stay on track with diet and exercise to remain as healthy as possible.  The exercise isn't so difficult.  I think I'm as strong as I've been in over a decade.  The prednisone food cravings are the worst!  When I start to eat I swear I feel like a ravenous animal!  We will see.  If I can manage the taper without gaining too much weight, I'll be a happy person :)

Reality Bites

I think I have been in La-La Land for a few months...ok since around May.  My complete and utter turnaround following some intense plasmapharesis back in April made me feel invincible, like this whole ugly mess was a part of the very distant past with only the stretch marks along my calf muscles to remind me of the horridly obscene swelling that wracked my body.  I've been living in denial as I cheerfully stated "discontinued" during my ever dwindling list of medications at doctor visits.  My numbers continued to get better and better as I slowly tapered from 4 to 3 to 2 to 1 immunosuppressant.  Then I continued along and made it to half dose of my final med in December and got the call before Christmas Eve that my latest set of numbers showed protein loss of 12mg!  To put this into prospective, I peaked at 28,000mg, and for this test anything below 30mg is T-totally spot on normal.  It is amazing how wonderful the word normal can feel once your life as become anything but normal.

Then the start of the New Year rolled around, and I could tell that something was a little off.  I got a little sinus infection that wiped me out for two whole days and left me feeling drained the rest of the week.  Then I noticed that my boots weren't fitting quite right.  I checked, and I'd gained 5lbs in just a couple days!  Talk about flashbacks to a really bad trip.  I panicked, failed an at home dipstick, and stopped by the lab first thing the next morning for some real numbers.  I had shot up to 208mg of protein between Dec 19 and Jan 9.  I doubled my current dose of meds, waited out the weekend, and headed back to the lab on Monday.  No joy...now I was up above 600mg.  Just like that and I'm back on 6mg of Prograff and 40mg of Prednisone.

I'll admit that I buried my head for a day or two and felt quite sorry for myself.  It is time to move on though.  I have chronic kidney disease, and that is the reality of the situation.  While it would have been wonderful to go directly to the drug free phrase and forget this all happened, it doesn't look like that is going to be my route.  And honestly I'm ok with that.  I've knocked it down once, and I'm ready to do it again.

So here I sit...back to reality as much as it sucks.  Just keeping on keeping on...