Calling All Angels

Just like the song by Train, I'm Calling all Angels. It's been a long week and a half for us. Excited with anticipation of dropping prednisone levels again, Eric got his wish. We went down to 5mg! That's pretty close to what your body naturally produces so were almost ready to see if he can begin to start making it on his own and get off prednisone all together.

Just a few days after lowering the prednisone Eric began having severe headaches/migraine and became a little more tired and exhausted easier than usual. So we drank healthier drinks, bundled him up more and hope for the best.

The work week started and the headaches continued. They'd come on strong in the late afternoon and peak highest just about bedtime and would linger all night long off and on, waking Eric every 30-45 minutes. I haven't had nights like that in over 6 months. It was pretty rough.

Eric went to work Tuesday and by the afternoon he was feeling as crappy as the days before. So as we normally do we contacted all his doctors and decided to increase his prednisone by .5 and go back to the usual drop of .5mg every two weeks. Wednesday came and went and the headaches did too. So Thursday I called te family Scott and we were able to squeeze in an afternoon appointment.

Typically most people wouldn't fret over he aches and tiredness, I mean seriously, who can't use a little extra sleep every now and then?

While we were there we took some blood work again to check Eric's inflammatory markers and his cell counts as well as some vitamin levels. He also got a B12 shot which might be a regular regiment after we consult his 4 other main doctors. She put him on Bactrim and Flonase in hopes that this might just be the start of a 'simple' ear infection or sinus infection and nothing worse. The thing is- the simple anything to the average healthy person can become easily more complicated and detrimental to someone like Eric because of all the immunosuppressant drugs and life threatening diseases he has.

So as Eric finally drifts off for who knows how long, I'm calling all ANGELS and PRAYER WARRIORS to surround him with their love and pray for this to be nothing more than a simple cold that passes soon and that the Stills Dragan lay dormant. For more information on Still's Disease visit: www.StillsDisease.org

-Amanda

http://youtu.be/TaG9SDxwPBg

December Labs

The doctors say to take the 'numbers' with a grain of salt. If I'm feeling 'good' or better and not worse --that's most important. These were taken in December but with the holiday Amanda didn't get them updated on our Quest App which is really helpful for any of my fellow HLH family reading this. It's called Gazelle by quest diagnostics and all you do is type in the date you had blood drawn and the doctors name and info and you'll have them on your phone app in just a few days. Then you can view them or fax or email them to another doctor with just one tap!

So my ferritin dropped back down and so did the CRP. They look at ferritin for several things. Ferritin is a measure of iron in your blood and is followed for HLH diagnosis, but my red and white cell counts don't indicate any crazy HLH stuff going on so it's likely attributed to my Still's Disease. CRP is a non-specific inflammatory marker they look at. Last time it was 4 something so this is a step in the right direction.

Just moved down to 6.5mg of prednisone last Thursday an I'm feeling it a little but I'm hopeful it will subside just like it has before so I can move down to 6 next week!