Advice Needed Please - Taper and Symptoms/Worried

I started remicade three weeks ago, and have completed my first two loading doses. My energy level, mood and sleep have improved, and we have restarted my prednisone taper (now at 15mg and due to taper down again tomorrow). GI also instructed me to taper my Cortifoam from 2x daily to 1x per day which I did on Tuesday of last week. He also said I could slow the prednisone taper if needed from 7 to every 10 days. Tomorrow would be 7 since my last reduction.

My UC symptoms were improving with the addition of more fiber to my diet and the remicade. This past week the bleeding has almost completely stopped. What did happen after this last taper is that I got a bit lax with my fiber intake last week, which caused constipation (which has ALWAYS been an issue for me) and then I ended up straining on Saturday which then led to about 24 hours of painful tenesmus, 5 trips to bathroom which has normally been 1-2.

It resolved as I "emptied out" and then yesterday and today were much better, but since Saturday am having some urgency when I do have to go, and that tenesmus "spasming" when I am going.

Would you all bump the Cortifoam back up? I do not want to increase the prednisone again. The remicade has vastly improved my CRP and ESR levels (very high to normal now) and there are definite improvements in mood, energy and sleep. My abdominal pain is gone too, and my stools are formed, but it seems like the prednisone/Cortifoam taper is bringing back some rectal pain and urgency as well as some crampy feeling gas. Thoughts? I will email my GI as well today.

Thanks, iPoop - that is my inclination, too. I hate the prednisone and really want to get off it as quickly as possible - I was on 40mg for about 3 weeks from Feb. 10 to early March, and then stuck at 25mg for about a month. It's been causing some side effects for sure, so I am eager to get off it.

Hugo18, this is literally identical Always so helpful to know you are not alone!

So I just re-read my symptom journal and it seems the urgency also slightly returns when I have this constipation/tenesmus issue (has happened twice before).

I just heard back from my GI, and he said that it's okay to go back to 2x daily Cortifoam as needed for now, but to keep tapering the prednisone as he is concerned about getting me "off the steroids ASAP."

My CRP also went from 8.8 to .1 after my first loading dose of Remicade, and my ESR from 44 to 2, so that is evidence that the Remicade is helping. Also, prednisone helped my urgency but never stopped the bleeding or passing blood by itself, but Remicade did. My GI also doesn't think the prednisone has done much good for me. The Cortifoam, however, seems to be a huge help.

Please keep us posted on how you do after the third loading dose! I have heard that people continue to see results gradually from Remicade so hoping the best is yet to come ;)

Thanks, Hugo18. I started having symptoms last year (and maybe even the year before a bit) but chalked them up to IBS and frankly was afraid of having a colonoscopy, which I now realize was foolish. I had been bleeding since the late summer. I continued getting worse until February of this year when I finally went to see a GI, had a colonoscopy and was diagnosed Feb. 8.

We started the Rowasa enemas right away and once I was able to retain them overnight, I had diarrhea and more bleeding. We stopped the enemas for a couple of weeks then added them back along with balsalazide. The same reaction happened with the enemas after a week. I stopped the enemas but continued on balsalazide, and started having progressively worse bloating, pain and discomfort. After about two weeks on balsalazide my UC symptoms worsened very suddenly, going from 1-2 bathroom trips per day to 10. We stopped the balsalazide and added Cortifoam - things got better after about 3-4 days.

I started Remicade early April and things have been steadily improving since then, other than this little blip this past weekend. No urgency today so far but still the crampy gas. I am wondering if the Sunbutter I've been eating is contributing to that.