Further adventures in chronic illness, or, a health update

It's been a while since I posted a health update, so following this last week's adventures, I thought I would catch everyone up to date. The short version is this: I will go off the cyclosporine in January, stay on the cellcept, and add IV- infusion treatments with Remicade to try to quell the disease in my eyes.  If that is enough info for you, feel free to skip the details below...

The last month on my higher dose of cyclosporine has resulted in rebellion by my body.  My kidneys are angry (creatinine levels up more than 50%, BUN numbers rising), my cholesterol is skyrocketing, my blood pressure is erratic, I am dealing with a stubborn virus that won't go away, and I developed a painful mouth ulcer with lots of swelling.  All these taken together mean my body is giving cyclosporine its marching orders.  And my tests (here and here) at UNM in ABQ yesterday showed that  my left eye is mostly quiet, but with some leaking from the blood vessels around the optic nerve still.  The right eye is more stubborn, and while it has improved some with the cyclosporine, it is still leaking.  So, since the cyclosporine is both wreaking havoc and not pushing the disease into remission, we must move along to try something else.

That next-best something is Remicade, along with cellcept.  Once we get the insurance on board and the details worked out, hopefully after the holidays, I will begin with three "upload doses", given every two weeks by IV.  After that we will begin infusions every 8 weeks.  We can increase the dose or the frequency as needed and as I an tolerate to try to force the birdshot into remission.  Once I hit remission, we will continue the infusions for two years, then try reducing and weaning off the drug, and hopefully staying in remission.  Obviously there are many unknowns here, and birdshot is so rare that you won't find the protocol for treating it without a lot of hard searching.  Every drug I use is used "off-label", or for something other than what the label says it can be used for.  So the great adventure continues...

If you have made it this far, let me give you a few specific prayer requests:

• Please pray for the details of where, when, and how for the infusions to be worked out quickly and definitively between multiple doctors at different institutions and the insurance company.
• Please pray that this would be an effective combination and God would use it to bring healing to my body.
• And most importantly, please pray that I would keep my eyes fixed on Christ, who does all things well and never wastes one bit of our suffering, but works it for our good and His glory.  Pray that I could rest under His frowning providence in this, and know His love and care even as I walk places I didn't want to go.  

Thank you, Gentle Readers, for your love and support and prayers!  My adventure with chronic disease continues.  I pray it pales in comparison to my adventures with a good God who has a bigger plan than any I can imagine.