Day +167 Progressive

Blood Counts:
HBG:15.5
PLT: 260
WBC: 7.46
ANC: 4.26

Hemoglobin was a little bit high during my last round of tests.  They said that it could be from dehydration, but that it bears watching, and that they will keep an eye on it.

Being on steroids is so hard.  On the one hand, I believe that they do have a positive impact on my joint issues.  They don't eliminate the pain, but I feel like they might help alleviate the inflammation a tiny bit.  (I was also prescribed a topical ibuprofen gel...it does absolutely nothing.)  I was put back on 40mg of prednisone daily at my last appointment, and have tapered down to 25mg.  Don't get me wrong, my fingers are still stiff and sore, and the joints in my toes, feet, and ankles can't tolerate much activity without pain, but I feel like the steroids are keeping it from getting much worse, as I haven't had very much progression into my other joints, like elbows shoulders or knees yet.  So far the pain and stiffness is keeping to the periphery, so that's better than nothing. 

Downsides are that, once again, I can't sleep at night.  I spend hours lying awake, alternately staring at the wall, or the inside of my eyelids, just hoping that I can get more than 4 hours or so.  My face is starting to fill out and look a little jowly and round again (which I hate), and I've gained back one of the lbs that I had worked so hard to lose.  Just trying to remember that they are hopefully just temporary, as my Drs have decided to try to see if Jafiki (ruxolitinib) can help with my joint issues.  I should be starting it in the next couple of days, and I'm hoping that it helps with my chronic GVHD.  If it does, then we can discuss tapering off the prednisone again. 

And by the way, how bummed am I to have developed chronic GVHD when I had literally no signs of acute GVHD in my first hundred days post transplant?  I thought I was home free.  While I'm thankful that the manifestations of GVHD have not been severe, I'm also concerned about progression, as my symptoms literally came out of nowhere, and are not completely alleviated by steroids.

Adding to my medical anxieties, I learned at my last appointment that the nurse practitioner that I have been seeing since I was released from the hospital is leaving UCLA.  On top of that, my doctor just went on maternity leave, and won't be back until May.  So I'm feeling a little bit abandoned.  I have no doubt that my new NP, and my interim Dr will be more than capable, it's just a bit difficult having to form new relationships, and explain all the nuances of my medical history to new people.