good biopsies, but inflammation...trying Uceris.

My GI just called with the results of my chromoendoscopy last week. The good news: all the biopsies were fine, no dyplasia.
But the pathology showed more inflammation further into the colon than in the past. He suggested an 8 week course of Uceris and then an office visit to figure out how to proceed in the future for maintenance.

I am not thrilled to be on any kind of oral steroid, having been on prednisone for 2 years a few decades ago and having developed full moon face, weight gain, etc. But, whatever, I will give it a try. (I know it's supposed to be a lot less systemic than pred.)

He threw around a lot of different med names for possibilities in the future. I mentioned the 6-mp and similar (having thought that would be the next step) and he started talking about TNF, Humira, Remicade, etc - I said to him, gosh, it's hard to even think about what I consider "the big guns" when I don't even feel sick! So.... we'll see. I have only been with this doc a few years and we have not faced any big issues/decisions yet. This bump in the road may tell how we work together.

He says that he thinks I should have annual colonoscopies (which is what I've been doing, pretty much) and that he would recommend chromoendoscopies here on out.

While I had him on the phone I mentioned that I went online to reorder a refill of Lialda and the cost came to $2,643! (for 3 months.) He said his office would call me to help with an assistance card. I am not sure if that or a Canadian pharmacy would be cheaper....

Somehow I knew he would call on Ash Wednesday. I am glad the news is as good as it is!

Your doctor's office might have lialda savings cards, if not get one online. /www.activatepharmacycard.com

Immunomodulators are next, imuran, 6mp, or aza. I'd try those before biologics.

I didn't find uceris anywhere near as horrendous as prednisone. I don't remember getting any weight gain or moon face from it either. I hope it works out for you. I would hold off on the "big guns" if you are not experiencing symptoms.

It sounds as though the offer of the Uceris might help you. If you have side effects, then they can be revisited.

Thrilled to hear no dysplasia!! Any hyperplasia in that inflammation?
The yearly c-scopes seem the way to go.

Is it possible to try another oral 5ASA such as Pentasa? Would that help cost-wise?


q

I am happy you got good results from the biopsies. I am not sure how I would feel about moving forward with steroids if I weren't having symptoms. Taking the uceris is going to provide what benefit? elimination of inflammation that isn't causing any symptoms? Why not just start 6mp or something to try to get things managed for the long-term and avoid steroids?

If you were miserable with moderate symptoms, I could 100% see good reason to take a course of steroids to try to get things to a manageable state while moving forward with additional treatment, but in the case where you don't have symptoms, I am not sure there is a point. I hate steroids...

What about entocort if Uceris costs so much? yikes.
I sure hope the doc can help with the cost of meds....wow, that's a lot of $$.

Hyperplasia...I realise means excess of cells, but not in the direction of cancer. My polyp has hyperplasic...I guess that's a good thing for now.

Keep us posted regarding what med you end up taking.

q

So glad to hear you had no dysplasia! I can understand why you hesitate RE Uceris, having insurance uncertainties & no obvious change in symptoms. It's so outrageous what these meds cost ... wish you good luck reviewing your options. / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)

I got the Uceris for $25. My local grocery store pharmacy, where I tend to go for non-long term meds, was on the list at the Uceris site (thank you, folks who put together the Resources section above!! xo) so even though I forgot to print out the card I got a month's worth for $25.

Something in the US system is very weird if an individual with medical insurance is given the option to pay $1,500 or $25.

And so I took my first of the Uceris just a few minutes ago.

I have given a lot of thought in the last week to no symptoms/microscopic inflammation/are meds necessary. As I went through the week I talked to someone with divertic. who was having the slightest of symptoms and was put on nasty meds for a month, and another friend who has HIV, no symptoms, and must take meds for the duration. I thought, "yeah, well. Grow up, Song. The meds are to prevent things from getting worse down the line!" And so I am taking them.