Another Year Begins

Happy New Year!  We had two whole weeks with the boys over the holidays...we were so happy!  We hope that you, dear ones, had a great holiday season as well!

So.  Did you know that long-term steroid use can cause your eyeballs to retain fluid to the point that their shape actually changes?  Yeah, we didn't either.  It must be one of those details (side effects) that they deliberately leave out of the newspapers.  (Forgive me a movie pun.)  Apparently, and quite logically if you think about it, the eyeball changing its shape negatively affects vision.  Another lovely gift from Prednisone.   

Andy's vision has been getting slowly worse over the last few months, so last week he saw a neuro-ophthalmologist.  She was one of the most patient and kind doctors we've seen yet!  We knew that the disease had caused him to have nystagmus (rapid, uncontrolled eye movement), but she confirmed that he now has cataracts in both eyes.  He needs correction at all three vision levels: near, mid, and far.  He was a bit discouraged because before all of this started, he had better than 20/20 vision.  Still, we are thankful that it is something that can hopefully be corrected rather than the disease itself taking his sight!  While glasses are in his future, they recommended that we wait a few months since he is still on steroids.  As his dose changes, his eyes will continue to fluctuate so if we get him some glasses now, they likely wouldn't work within a month or so.  I guess he's going to have to deal with blurry vision for a while longer.  

This past Sunday, January 2, Andy dropped his daily steroid dose from 12.5 down to 10mg.  This morning he saw his primary neurologist and his physical exam looks good.  Hooray!  His repeat MRIs have been ordered, as well as a repeat bone density test; he is to remain at this steroid level until all of those tests have been completed.  After the team goes over the results, they'll advise us on next steps.  

I'll leave you with one quick prayer request.  Please join us in praying for timely infusion approval.  He likely won't need another one for a few more months, but they are going to start working on approval now since it took three months for them to authorize them last summer.  It would be so nice if it went more smoothly this time.  Here's hoping!  



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