Tuesday, March 06, 2018

A happy health update

It has been a long time, Gentle Reader, since I gave a health update.  If you are uninterested in details, the upshot is that God continues to be gracious, and we will try to cut down on my medication load.  Hurrah!  Details follow.

After a tough season of struggle on a couple levels, a new doctor was sought out.  The struggles involved not my eyes nor my birdshot-- they have remained very stable.  But the large amount of immune suppressants I have been on to achieve that are taking their toll.  Since October, I have had diverticulitis, a C-Diff infection, a respiratory virus, an eye infection, and a sinus/ear infection.  My current ophthalmologist is a good doc and good guy, but not familiar with my disease, and hesitant to remove me from any more of my medicines.  The time came when I was still stable (and as a matter of fact, there is no sign of birdshot remaining in my left eye, and my vision field test is normal!) to try to rid myself of the immune suppresants, if not permanently, for a time of respite for my body.  So, enter a birdshot chorioretinopathy specialist in Denver.  Perhaps we should have headed in that direction as soon as my specialist at UNM left, but here we are, and we made the move to see him last week. 

I have to tell you, Gentle Reader, that it was such a tremendous relief to speak to someone who knows more than I do about this disease, and who can confidently plot a course for me, who listened well, had a plan with options, and seems to have an extremely friendly and competent staff.  God is so good to us! I was lifted!  And here is our new plan:

  • We will try easing me off the immune suppressants.  I will stay on my current relatively low dose of mycophenylate every day (500 mg  twice a day) and extend my remicade infusions to every 10 weeks for three treatments, then every 12 weeks for three treatments, then stop if all is still stable.  That will be followed by me ending my mycophenylate.
  • I will see the Denver doc every six months for tests and exam, and my ABQ ophtho every 6 months in-between, so they will follow me at every 3 months during this process to watch for early signs of a flare.
  • If a flare occurs, we will discuss options for changing my infusion drug since I am really getting a lot of infections on remicade right now.  
So, I still walk in hope, am seeing well, and rejoice in God's provision!  Won't you join me in rejoicing?!