Friday, July 15, 2011

Clinic in July

We had our clinic appointment.

Think I shared I had a bit of anxiety with this one due to the last appointment but all went well.  Busy day at the hospital that is for sure.  Our appointment was at 1030 but we weren't seen until 1130.  I don't mind.  As long as when I am late, they extend the same courtesy.  They do! They are great (SCH).  The interns were sent in to entertain us until our main doc could get finished with her last appointment.  I made the mistake of saying that out loud and immediately apologized.  The intern doc giggled and said I didn't have to be sorry because it was true.  It was nice to chat with her because she was the same intern who was in on the UP'ing of Gary's meds.  I was completely candid with her telling about the last appointment.  I told her I went home and cried my eyes out because I felt like I should have been less willing.  She nodded like she knew my pain because she had heard or had the same discussion.  She said she wished I wouldn't feel that way but understands this is all so very important.  We are all working to spare Gary from the uglies of JDM.  Not just following what everyone says is not always easy.

Last month when Cure JM visit our lovely city of Seattle, they brought with them the leading experts.  My little  complicated Gary was discussed!  YES!  I knew it.  I was so happy for that.  I am so happy that they did.  It is so great to be able to get that prespective.  As a result, Gary is starting a new shot.  This is the one that was up in the air with tacrolimus back when we started that.  Enbrel.   I actually blogged it, linked it, and new about it.  Our doctor said she didn't remember talking about it with me but I refreshed her memory.  So battle is on with the insurance company. They will cover it but only through a mail order and it comes with a hefty hefty co-pay.  Our family will not be able to cover it.  But it will work out.  We also talked about starting him back on the tummy protector for acid reflux, why they think his voice keeps going.  We got something strong for thrush, so we will try and get that kicked out as well.  They tried to run labs on us again but I assured them  labs were done at the infusion, dig a little deeper.

Overall, where we have been, he is doing well. I HATE the way the calcium looks under his skin. You can see it around his elbows now.  It seems to be more prominent.  Not bigger, just noticeable.  He has few lesion looking spots on a few of them but no big deal, yet.

Maybe Enbrel will be the answer.  Our doc looked at me straight
and said, "we have just about tried everything now."  Well that is just as fun as hearing he has a severe case of JDM.  The best news however, we are tapering back down off of steroids!  Yes thank you very much!  3ml this week, 2ml next week, settling back into 1ml week 3.     Let out a big sigh for that one : )
Joyfully, give it to God


  1. I gotcha covered on this one! Enbrel was my miracle for awhile along with methatreate it did wonders I was getting back to Sums starting to taper steroids and then my dr. went out of town the nurse didn't check my labs or give my messages to the drs. and when they finally checked my liver shot really high so they lowered my metherexate until my enzymes went down which caused a major flare. So they took me off Enbrel thinking it wasn't working anymore but I still think it was the lowering of methetrexate..anywho I think this will work for Gary and I have another surpise you will Enbrel you can find it online it is called the Enbrel Support long as your copay isn't higher than 700.00 a month they will cover it...and you can sign back up every year and they will send you sharpie container, alcohol swabs, etc. i have a friend who's little girl has ra and I told her about it and they covered it for her and she thanked me through girl call will be one less worry! Oh they are still really scared IVIG for me cause of blood clotting but they are calling Duke they may due this almost full blown chemo drug for six mths they are working on it...yup I am 33 and I have JDM...the hubs said he knew I was juvinelle but sheesh...just kidding...have to have a little humor with all this crapola..

    love you

  2. ps the dr. said that to us too...not fun...oh and Gary is just the cutest ever....

  3. Hi. I am here from Summer's blog. I am really really sorry that your sweet Gary is fighting this terrible disease that I have only learned a lil about through sweet Summer. I just wanted you to know you have one more prayer {daily prayer, that is} going up for your sweet boy. And yoru family too. Best wishes...keep your spirit alive.

    Love, Meli