I've gained back about 25 pounds, which is awesome- I'm happy weighing 140 lbs, that's below my target weight when I was in Weight Watchers a few years ago. My hair's growing back quite well, though it's leaving me with all this ridiculous frizz that's a couple of inches long. My cramping is, for the most part, going away.
The bad thing is that I've started getting very severe pains in my lower abdomen in a new spot, and it radiates down into my thigh, and it just drives me up the wall.
I'm on 150 mg a day of Imuran now, but it's still too early to tell if it's working, since I've only been on the full dose for a week or two. I also have to visit the lab to get bloodwork done weekly.
I went to see Dr. Kaplan about the abdominal pain, and he thinks I'm having some more severe inflammation in the area. Like I said earlier, he told me it was a bit too early to say whether the Imuran was a failure, but he did lay out a couple of options for me:
Option A: Go back on a short course of Prednisone, because we know I respond well to it, so I don't feel like crap while we wait for the Imuran to possibly start working. If it fails, then start Remicade or Humira, and if those fail, surgery or experimental therapy. The downfalls to this option are the fact that the side effects of taking Prednisone for a long time are pretty crappy, like losing bone density, for example (I've basically been on Prednisone on and off for a year and a half or so now). Also, Remicade and Humira are more likely to work well (and actually HEAL damaged mucosa- which would be absolutely awesome, no other meds really cause that to happen) if you start treatment early, rather than waiting until the problem becomes more severe, so waiting for Imuran may decrease my odds of having success with Remicade/Humira if I need to take either of those.
Option B: Go straight to Remicade or Humira, and failing that, surgery/experimental therapy. The downfall to this is basically cost. Remicade and Humira are both really, really expensive, and Imuran isn't so bad comparatively, so if we give up on it now, we may be giving up on something cheaper that *may* still work for me. Also, Remicade/Humira both have scary side effects, though they're sort of rare, such as lymphoma or a lupus-like syndrome. (My family's cancer history does make the lymphoma risk something to consider.)
So... that sucks, basically. Mom's out of town for a while, so I didn't really feel comfortable making the choice to go on such expensive medications without her opinion, since she's the one footing the bill if it's not all covered by her insurance. (We're looking at around $30,000 a year for meds here with no insurance coverage, and they may not be covered- don't even get me started on how scary that is for my financial future once I'm on my own to pay for these sorts of things, should I need to take them!!)
So, I've got an abdominal ultrasound booked to check out those cramps, and another appointment with Dr. Kaplan when Mom gets back, to go over these options with her there. Until then, he's started me on the Prednisone, because it would just suck to wait another two weeks with these pains, and because he wants to see if it's responsive to it (if it's not, that would indicate a more serious inflammation, and I'd have to have another colonoscopy to check it out).
That's basically it for this update- Dr. Kaplan had a new baby boy a month ago, so he seemed a bit tired, plus there was a fire drill right before my appointment so everyone had to evacuate the building- just minor chaos.
Here's a couple of random pictures:
Here's a pretty recent picture of me; the moonface from my prednisone has faded away a bit here now (but it'll be back I'm sure...)-
And this is my pretty new pill container- I had one with 4 compartments for each day and it was huge and annoying, this one I can just chuck into my purse. But it's verrry full with all my pills for one day...
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