Monday, June 24, 2013

Steroid Taper: Ready or Not

Summer is here.  Kindergarten has been completed.  It definitely was a rock n roll kind of year but we muddled through somehow.  Gary finished out the year amazingly well.  We did get to the end of the year only to find out there was some error in communication.  He was under doctors orders to have sunblock applied mid day, everyday.  Not sure what happened but that stopped happening.  That is ok though, well, it is unfortunate but since he will be going to school full time in September, I will drive there myself at noon to apply it.  I put it on in the morning but it needs to be applied again.  So.

Gary is doing pretty good.  I am really sick, and concerned about too much steroids.  Last week at our monthly admission of IVIG and Orencia infusion I let it be known.  We are not sure if his disease activity is off but trying to figure out if his body is just steroiding out (red skin, muscle irritation) or if the steroids are holding JDM and it is still getting through.

The first bold attempt we made was holding off on his Rituxan treatment.  We are in and have been in the war of what is working and what is not.  So in May I was schedule for surgery.  I had to call and delay the treatment until I was better.  We had already talked about not giving it.  Well I had said (before I even knew about my surgical future), what about not giving it to him?  The doctor shrugged and said, "oh yeah, why?" and "ok/".  We are all really at this lets cross that bridge when we get to it in his treatment.  I think we all know that we need to make a move.  We need to see what his body does.  It is like playing Texas Hold Em.
I know this can get dangerous and only end in a monstrous flare.  The old me would have been on the NO WAY train but I really want my little guy to have a normal life, or something that resembles it.  He sported the moon face the entire kindergarten year.  I hope we can start first grade with no cheeks, and no flares.

What starts to stop me in this is his calcium deposits.  Some have gone way.  Some have shed out.   Some are large.  Some are angry.  Some are staying the same.  What I haven't noticed is any new ones.  It is often hard to tell because he has so many.  Trying to figure out if something is new, is next to impossible.

So the taper.  The doctor decided to first mess around with his home dose.  We are going from 12mg to 10mg, to 8mg.  Meaning this week he went down to 10mg.  In two weeks we will try to nudge down to 8mg.  So no Rituxan, and tapering steroids.  Told you we are getting bold.  He will still get a weekly pulse of 350mgs at the infusion center.  Sure it is nerve wracking.   Two weeks ago his ast and alt popped up but came back down on there own.  So my theme for this summer is, "On Your Own".  Come on Gary's body, do this on your own.

I had a salpingo oophorectomy on May 28th.  It is the first time I have ever had surgery.  There was a large mass on my ovary (10cm).   I got to experience the weigh-ins, height measurements, temperature readings, arm huggs, shots, pokes, prodes, medicines, ect,.  Everything my little man goes through.  I am still not over the shot of heparin they gave me in the back of my arm.   They did an excellent job with my iv's. I had a total of three.  But the big one, the man nurse did amazing.  I didn't even feel it.  It was on the top of my hand too.  However, I have had IV's started when having the babies, and those did burn and hurt.  Not trying to take anything away from Gary by saying that.   The month of May for our family was pretty stressful.  Walking around not sure if you will get to grow old was hard to take.  I went from running 50 miles a week to a stand still.   Like hitting a brick wall.  My family did a wonderful job supporting and nurturing me through it.  Recovery has been good but a little hard.  My diagnosis ended up being benign but I did have endometriosis.  I get the pleasure of taking birth control pills to stop it from happening again to my other ovary.  I am post op 4 weeks tomorrow.  I am still uncomfortable at times, working my way off of narcotic pain relievers.  I am having a really hard time sleeping but as soon as I can get back to my regular exercise it will be better.   I can sweat this stuff out of my system and get back to me.  Did I tell you I got a shot in the back of my arm and there is still a big knot.  I don't know how these kids do it.  My favorite was when they took my temperature.  They handed me the thermometer.  I was use to having to watch Gary have it put in his mouth for him for the past four years, I opened my mouth and waited for the nurse to put it in my mouth.  When I realized she was handing it to me, I blushed. LOL.  I also gave Gary's date of birth a few times because I am in such habit of saying his numbers.

My next challenge is a 1/2 marthon in Chicago on July 21.  Yep, it should be interesting.  As always I am excited to here about the lastest and the greatest in the world of JDM.

Well, Gary does.  Think I have mentioned my liking of her before but I'm back to praise again.  Dr. A is amazing.  She took on a huge project.  She charted and graphed Gary's care since diagnosis.  I myself had attempted it.  I had put it into a timeline app.  I had it all finished when the app crashed and I lost it all.  But I was moved to tears.  She handed me this 27 page packet.  It has a summary of every visit.  What is symptoms were, what he was on, ect,.  She also graphed it!   She got graph paper and was making a visible timeline.  They are in search of a connection.  TEARS  They often asked me has there ever been a time when you thought Gary was JDMless.   Like what medicines was he on when I felt like that.  My answer has always been, "I don't know."  We have always been on so many things at once.  Like cell cept and tacrolimus.  I think his skin was good back then but he had this under lying muscle weakness that I failed to see until JDM finally took over as the calcium developed and everything was abruptly changed because he was going over a cliff.  He had good skin for a short time but had a lot trouble with stairs, getting up on beds, into cars.  We always just dismissed it away or being on eveything he was on you completely rationalize it.  Now, if I could go back and whisper to myself, I would have said, "get off this train, its goes nowhere".  But just like we are right now, its the same predicament.  Do I feel like he is good enough to taper steroids.  It is hard to tell.  It is hard to say.  I am not sure.  I do know at this point in time we are ready to see what happens.  My biggest fear is getting him a path that we can't get him off, waiting for something new to kick in.  Or going back to what worked before, but didn't fix it.  Cytoxan, only got him so good.   Rituxan,  fine and dandy, but it didn't turn it off.   That is our ultimate goal.  A cure.  A cure is our ultimate goal.  

Thank you Dr. A!  We love you!  That packet is tough to read through.  It is like reading a story from the -Horror/Fiction section.