Tuesday, February 28, 2012

TSC Tuesday - Have you hugged your Pharmacist today?

The quest for a topical ointment to treat R's facial angiofibromas has taken  a positive turn. Thanks to a kind pharmacist in Edmonton at the Strathcona Prescription Centre. Oh, if it wasn't a 3.5 hr drive I would hop in my vehicle, race up there and hug her!

{For all you Calgary readers....maybe Edmonton isn't so bad? (There's always been a rilvary between the two cities, you see.) The Calgary compounding pharmacy did NOTHING to help us. NOTH-ING. Anyway.....}

Miss R, who has never met us, went above and beyond by researching TSC and Rapamyacin (or Rapamune).  Because the Rapamyacin ointment is extremely expensive....uh, $3000 per month based on the prescription and strength that the dermatologist wrote.....Miss R researched other comparable meds that are not so cost prohibitive.

Can you hear the angels singing? Hallelujah Halleeeeeluuuuuuujah!!!!

Based on Miss R's findings IF the med alternative is appropriate it, the cost would go from $3000 per month to $400 per month. Hot damn!! It's still a lot to swallow, and our little family may be eating less coconut ice cream and more home made stuff, but oh well. Bup's cute little face will benefit from it as will my tucas.

So, what is the other med compouned into an ointment options?
Tacrolimus or Prograff

NOW....to meet with the dermatologist for a rewrite and another consult.

1 comment:

  1. Pharmacists are the unsung heros of the medical world! I hope it all works out for you.