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Ulcerative Colitis
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Posted 1/7/2023 1:15 AM (GMT 0)
Hello everyone, I am new to the site and just wanted to pick y’all’s brain.

I was diagnosed with UC in 2006 at the age of 17. Outside of my initial issues I had when diagnosed I have been pretty fortunate over the years. I have had minor flares at different times, typically when I was younger and not taking my meds correctly. I have been on pred a couple times to get things in check but for the 8-10 years I have taken my daily mesalamine and kept things in check.

Unfortunately, in mid-November I began getting that feeling that something was coming on. It slowly kept getting worse and I contacted my doctor and got blood work and they gave me Uceris to try. After about 10-14 days there wasn’t much change. They swapped me over to Budesonide on December 19 and I took it until the 31st without any real changes. Since it was around the holidays she went ahead and sent in Prednisone in case I needed it. On January 1, after holding out as long as I could, I decided it best to go ahead and take the Pred and get it over with in hopes of stopping the flare.

Now here is where my question and why I am here. I am on my 6th day of 40mg Pred and although the urgency is better I am still having diarrhea and occasional blood. I felt it should be making greater strides by now so I contacted my doctor again today. We had already begun talking about starting biologics following the Pred but the process may be moving swifter now. She had mentioned starting Stelara but stated insurance often has issues covering it so Infliximab may be the next choice. In everyone else’s experience, what would y’all be want to do in my situation?

I live in a rural area and my doctor is 2 hours away. Best case scenario is I find somewhere within an hour to get the infusion if I go that route, which isn’t ideal. Obviously, all of my concerns will be discussed with my doctor but I wanted to get some first hand info from others that share the same struggles as me.
Posted 1/7/2023 3:43 AM (GMT 0)
Any time you have a flare after a long time of stability - and any time you have a flare that doesn't seem to be responding to steroids - you should start with stool tests to make sure there aren't any infectious organisms that are causing your problems.

Assuming that comes back clear, then it's a UC flare.

Then you should probably get a fecal calprotectin test (another stool test that looks for the protein called fecal calprotectin, which is released into the stooll when there is inflammation present in the intestinal wall).

When was your last scope (sigmoidsocopy or colonoscopy)? If it has been awhile, it would be a good idea for the doctor to take a look and see what the severity is.

Then you'll have a better idea whether you'd need to proceed with biologics. As you stated, insurance often has a lot of say as to which one you start with.
Posted 1/7/2023 4:09 AM (GMT 0)
Sorry you need to be here, but welcome to the forum.

Sometimes it can take pred a while to kick in. My last flare I was on 40 mg for 2 weeks and it still wasn't doing much. Dr kicked up to 60 mg and it started working almost right away. I suspect I had been using some form or steroids too many times and had built up a tolerance.

2 hours is a long way to drive for a 2 hour infusion (you will be there for 3 hours because they have to mix the med) so hopefully you can find someplace closer. Infliximab works for me. I don't know anything about stelera other than it works for some and not others (like every other med). Did he mention Humira? That is another home self injectable med.
Posted 1/7/2023 5:17 AM (GMT 0)

beave said...
Any time you have a flare after a long time of stability - and any time you have a flare that doesn't seem to be responding to steroids - you should start with stool tests to make sure there aren't any infectious organisms that are causing your problems.

Assuming that comes back clear, then it's a UC flare.

Then you should probably get a fecal calprotectin test (another stool test that looks for the protein called fecal calprotectin, which is released into the stooll when there is inflammation present in the intestinal wall).

When was your last scope (sigmoidsocopy or colonoscopy)? If it has been awhile, it would be a good idea for the doctor to take a look and see what the severity is.

Then you'll have a better idea whether you'd need to proceed with biologics. As you stated, insurance often has a lot of say as to which one you start with.

Sorry I forgot to mention I did get both of those stool samples. There was no infection found and my inflammation was high, not sure the exact number. My routine scope was scheduled for early February so we were trying to just stay with it but we might have to move it up. I have a Telehealth appt next week so maybe I will figure something out.
Posted 1/7/2023 5:41 AM (GMT 0)
OK, good to know they ran those tests. Have you tried mesalamine enemas or suppositories?

Give the pred a little more time, try mesalamine enemas or supps if you haven't already, and see what the scope shows. Move it to sooner if you can.
Posted 1/9/2023 7:03 PM (GMT 0)
Will your insurance cover Xeljanz? It's a pill. I think new FDA rules won't let you start it if you haven't tried something like remicade first though. I live in a rural area too. It's a pain having to drive an hour to appointments, let alone 2. That would suck.
Posted 1/12/2023 6:43 PM (GMT 0)
Update: I was approved for Stelara yesterday. In the process of getting things going to get it started.
Posted 1/14/2023 8:00 PM (GMT 0)
Hope it works for you.
Posted 1/31/2023 9:21 PM (GMT 0)
Update:

Went for my Stelara infusion today and had an allergic reaction within the first minute. Back to the drawing board.
Posted 2/6/2023 8:40 PM (GMT 0)
Sorry to hear about your allergic reaction!

Maybe that will let you try Xeljanz.

Did you consider Entyvio? It's supposed to have fewer side effects than Remicade. On remicade I had to pre-dose with Tylenol and Benadryl just in case, but I didn't have to do that with Entyvio and they didn't even have me wait for observation after my first Entyvio infusion. Entyvio is also only about a 30 min. infusion instead of about 2 hours.

I know you mentioned that distance from infusion center is an issue. Would home infusion be an option? After the loading doses, which were done at the hospital, my insurance actually required me to switch to home infusion. The drugs were sent to my house the day before and a nurse would come to do the infusion. I guess that's cheaper for them.

Hope you feel better soon!
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