Update on the now 18-y/o

Hi all, haven't posted in awhile. The 18-y/o DS has been on a slow taper of prednisone for awhile now. Originally he was on 40 mg, dropped to 30 and got to 20 mg, all too fast apparently as he was back to what had been his regular self, having about 20 BM's a day. So, we started back over at 40 mg and this time we've tapered him more slowly. He was on 40 mg for a month, then 35 mg 2 weeks, 30 mg 2 weeks, 25 mg 2 weeks, and next week down to 20 mg and so on. In the meantime, he had a CBC with a differential. His WBC count is up 3 points from July, when he had diarrhea so bad he could hardly stand it. At the moment, BTW, he is having formed BM's, maybe once or twice a day, and he's just thrilled that they're formed! Anyway, back to his CBC....neutrophils are up, lymphocytes % are down almost double to below normal, Hemoglobin is up from 12.2 to 12.6 but still low and Hematocrit is up from 37.6 to 38.1 but still low.

My question to all you long-time UC'ers out there....this elevated white count. There's still inflammation there is what I'm thinking. So, are we just prolonging the inevitable here? I guess to get down to the heart of my question....is the prednisone just covering his symptoms right now and taking care of the inflammation to a degree that he's somewhat normal, but the more he keeps tapering the worse it's going to get (based on the fact his WBC's are elevated)? Clinically, he appears to be a normal kid with normal BM's right now on this slow taper....I'd love to hear your thoughts!!

He is taking Lialda 2.4 mg daily along with a potent probiotic, and he also takes Strattera 60 mg daily (nothing to do with UC, obviously). He has been on Lialda since the colonoscopy in September.

You're right soystud, I didn't explain myself....originally they were going to hospitalize him and watch his progress (I believe Humira or Remicade was in the works) but we tried this taper instead. I guess by "prolonging the inevitable", is the current prednisone just getting him by for now? I see this elevated white count (which to me is inflammation) and I just wonder if we're not as close to remission as I thought....I was hoping that this prednisone taper would put him in remission. Was that wishful thinking?

I know it won't cure anyone, I just was hopeful that this would be enough to put him into remission and he could just be on Lialda and move along normally, if there is such a thing....I guess only time will tell if it works. We still have a good ways to go to finish the taper!

Hi colbran
I looked up the side effects of Strattera. I don't know why he's taking this but the side effects look pretty serious.
May not be related but made me curious.

I have avoided prednisone and other "heavy duty" drugs during the past 10 years because of the potential side effects.
Have stayed with oral and rectal mesalamines for the most part. Also tried enemas containing cortisone for a short time.

You don't mention if he's tried diet restrictions. I found a big improvement when I eliminated lactose and gluten and any other foods that seemed to be an irritant.
Also am a big fan of supplements like slippery elm that I take nightly. (Soothes the digestive tract and helped to eliminate the feeling of urgency.)

Over the years I have gone from having a completely inflamed colon to a small amount of inflammation near the rectum. For that reason, I recently went back to using mesalamine enemas and, in just a few days, have noticed a difference. My goal is to eliminate all inflammation.

Some have experienced success using LDN which has virtually no side effects.
See the tab U. C. Resources...about the 12th or 13th post for lots of info provided by InSoFla.
Hope this info is helpful.

Elevated WBC count is often a side effect of the prednisone itself and should never be used an indication of inflammation while one is on a high dose or taper. It's important to watch for physical signs of inflammation (cramps, D, blood, etc.) and react accordingly (slow down taper or add in other meds) but try not to get caught up with too many indirect markers of inflammation in the meantime. Often it's the case that CBC, stool lactofarin, and c-reactive protien tests are not helpful in diagnosing colitis. I was in a classic flare complete with blood, D, and cramps (albeit relatively minor/moderate by textbook cases standard) last fall and had completely normal bloodwork and stool samples.

All we can do is our best - pick medicines whose risks you're comfortable with and always try to maximize periods of remission by staying on maintaince meds. Make sure that if you use pred you use it well, and take full advantage of the resulting remission.

Best of luck and happy new year!