Tapering Prednisone. Maybe.

 Here we go...

Well...my "quick taper" off oral prednisone is turning into a very, very slow taper.  While I'm still feeling a huge improvement, the actual progress isn't quite as impressive (blood loss, etc...you know the deal).  I bet many of you can relate.  My colon just isn't catching on: we're getting better, dammit.

I was supposed to drop from 40mg of prednisone to 30mg a couple days ago, but after still seeing blood daily, my doctor has decided to slow the taper.  I went down to 35mg yesterday and am still using the cortifoam and hydrocortisone enemas twice a day (as well as the Humira: 80mg injected per week). 

Tapering is always scary--I start to see little hints of the flare returning, and it's such a time of "wait and see what happens"; tomorrow could be a disaster or an exciting improvement.  One day can be such a huge turning point when on the cusp of a flare.

At first I really wanted to taper as quickly as possible; the less prednisone I expose the baby to, the happier I'd be.  But as time goes on, I dread a return to the hospital; stable medicine HAS to be better for baby than sporadic high doses right?  So I'm resigned to spending at least the entire second trimester on prednisone.  (That's what it's looking like with the rate of this taper.)  Break out the pill cutter...   

The fun continues!

After 4 days on 40mg Solu-Medrol (through IV), my doctor is having me use Cortifoam enemas in the morning and more expansive hydrocortisone enemas at night.  While I do have pancolitis, these enemas have offered a little relief (at least from frequency).

I also took a double dose of Humira this week. My doctor says sometimes this can "reclaim" patients who've built up antibodies.  Fingers crossed. 

Other than that, just hanging around waiting for something to happen so I can be discharged from the hospital!  Thank goodness for knitting projects.

Drugs, drugs, drugs...

For a typical mom-to-be, the idea of taking Tylenol would make her squeamish.  But for those of us with chronic illnesses, powerful drugs are a necessary evil.  When researching IBD drugs online, "the experts" reassure us that all is fine, but I kept asking myself, "Are real women following this advice or am I the only sucker?"  I couldn't find anyone legit online (besides anonymous forums) that discussed using biologics or immunosuppressants while preg.  

I currently inject 80mg of Humira once every two weeks.  It's not ideal, but I need it.  Both my OB-GYN and gastroenterologist insist that it is safe during pregnancy and even while breastfeeding (although baby cannot have live vaccines).  I was also on prednisone when I discovered I was pregnant and quickly tapered off that same week.  

Should the ever-lurking flare recur, I will be going back on prednisone.  The Docs say the risk to the baby is far greater if mom is flaring than the risk of prednisone's side effects; I'll keep telling myself that.