Just the Facts, Ma'am

I had hoped to wait a bit longer before posting again, yet here I am.  I'll be quite quick. 
  • Andy had his annual DEXA scan on the 11th and today we got the results.  While he doesn't technically have osteoporosis, he is well outside of normal limits and has "significant bone density loss" compared to last year's baseline scan.  The steroids have done their damage, so now he is to begin regular osteoporosis medication with the hopes of slowing/preventing further loss. 
  • His B-cell levels were checked and he still literally has none, so the Rituxan seems to be doing its job.  They'd originally estimated that he'd needed another infusion in March, but as his immune system is still suppressed, they are going to hold off for now and redo his blood work in May.  
  • Next week he has an appointment with an optometrist to see about getting the long-awaited glasses!  He's at a low enough steroid level that the refractive power of his eyeballs shouldn't change too much as he continues to taper.  Fingers crossed that this works...he would love to see properly again!
As for prayer requests, just the usual few this time...
  • that his steroid taper will continue to be successful (he's at 7.5mg daily now)
  • that his next infusion will be approved (it is still pending)
  • that overall, he'll continue to stay healthy through the cold/flu season (you know, since he has no immune system)
There.  I wasn't TOO long, was I?  Alan Rickman would be proud.  

Comments

Post a Comment

Popular posts from this blog

Did THAT Go the Way You Thought It Was Gonna Go? Nope.

I'm sorry to be back so soon, but there was a hiccup with his LP that I thought I'd share... There is some good news - Andy didn't have a fluid leak this time.  Huzzah!  He had the beginnings of spinal headache (think regular headache but five hundred times worse) on Monday night, but he took the recommended meds and was diligent in staying flat for 24 hours after the procedure and I'm happy to report that he is feeling fine now.   As to the hiccup?  Well, let's just say that it was like he was starring in the movie Misery , and Kathy Bates was his physician.  The doctor wasn't having success in getting his spinal fluid out, so she kept manipulating him, the moveable bed, and the inserted needle itself.  As a result, the needle kept bumping into the nerves and sending terrible, shooting pain down his legs.  Like, really awful.  And it went on for over an hour!  He was quite shaken up when he finally got back to me, and he was literally s...
Read more

Slow and Steady

Since he dropped (his steroid level) to 10mg daily last month, Andy has done quite well; thankfully he hasn't seen any significant increase in symptoms.  Our fingers are still crossed, but so far, so good!  On February 1, he had a repeat set of MRIs and this morning we received great news: Brain:  He still has a few remaining lesions but they are similar in appearance to his previous scans and there are no new lesions detected. Cervical Spine:  There is still one decent-sized lesion, but it is less pronounced than in the last scan.   Thoracic Spine:  There continue to be some areas of demyelination there, but they, too, are less pronounced and decreased in size than on the last scans.  No new lesions are observed.  While we would obviously love clean scans, receiving news like this is very welcomed.  If you recall, before he started treatment, he was losing is ability to walk, see, and having a host of other difficulties.  When look...
Read more

Limbo...Not Our Favorite Place

Last time I wrote, we were praying that we'd get timely approval (from our insurance company) for Andy's new medication.  Sadly, a month has gone by and that hasn't been the case.  We are now on our third appeal, and all of the neurologists on his team have written and asked for a case review by the insurance company's "rare diseases panel."  (At least there is such a thing.)  In case that doesn't work, we've also applied for aid directly from the drug manufacturer, a program that UCSD referred us to.   Hopefully something works out, and soon.  The steroids are keeping his symptoms relatively stable, but the side effects are really getting to him as he's been on high doses now for over seven months.  Keep praying, dear ones!
Read more