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Lowering Budesonide Dose

I started taking Budesonide in May 2021, three capsules a day.
I also started Methotrexate and Folic Acid in May 2021.
I had my Stelara Infusion in Oct 2021.
I did my first Stelara injection at home in Dec 2021.
There is a 6 month gap between the Budesonide and the Stelara because I had to find financial assistance for the Stelara.
[ My Health Insurance Company and my Specialty Pharmacy were all on board and ready by June 2021, but my co-pay would have been $2,800 per injection and I didn't have that money ]
I just saw the NP at my Gastroenterologist office today.
Based on my current symptoms and how much better I am feeling, she wants me to start taking 2 Budesonide capsules a day starting January 12th, 2022.
Today I only had one BM and it was "normal."
Today I ran errands and had an appointment with no worries about having "emergency" diarrhea while driving and being away from home, which was great.
[ A year ago I actually pooped in my pants in the hallway at my Pulmonologist Office, that is when I knew I was in a Crohn's flare.]

I just wanted to know everyone's thoughts about the NP reducing my Budesonide after me only receiving the infusion and one injection ?
Is my NP lowering my dose too soon ?
I am 61 years old. Diagnosed with Crohn's in 2018. I was taking Humira for 3 years. Started a Crohn's flare in 2021.

Thanks for your input.

🙂
 
Hi, my son was on Budesonide as well. Because it is a steroid, you will find that it will take a few days for your body to adapt to the reduced dosage. The same thing happened to my son - everytime he dropped the dose, the next day, he would see a change in his washroom habits. It should get better. Typically Budesonide is taken for 3 months in total, so I think it's not a bad idea to follow your doctor's instructions. If things don't get better in a few days, then you might want to make a call. You are still on a maintenance dose so you're not totally off it which will act as a bridge until your Sterlara is working fully.
 
Location
San Diego
I just wanted to know everyone's thoughts about the NP reducing my Budesonide after me only receiving the infusion and one injection ?
Is my NP lowering my dose too soon ?
I think it's worth a try. You know you are going to have to go off that budesonide sooner or later. It's milder than predisone, but it's still a strong steroid with high risk of bad side effects. And even though Stelara has a reputation for taking a long time to kick in, there are some patients (including me) who responded to Stelara quickly - within a few weeks.

So given your improvment on Stelara coupled with the need to reduce and eventually get off the budesonide, I think your NP is on the right track.
 
Thank You for your input. 🙂

I felt really confident going out of the house yesterday, to go to an appointment and to run errands, because I didn't feel like I had to drive real fast to a mini-mart restroom because of 'emergency diarrhea." The more times this happens, the more confident I will feel about going out of the house [ I am retired / disabled, so I do not work anyone.]

I am so afraid by lowering my Budesonide that I will start having "emergency diarrhea" again while driving and socializing. But it IS a steroid and I need not be taking it any longer. Everything about this Crohn's / Crohn's treatment is so unpredictable. And you can tell I suffer from severe anxiety from it. 😳

Lynda 🌻
 
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