Question on Prednisone management

Flaring on Prednisone feels very different to me. I am not losing weight, having severe weakness, or bleeding like I would without. I dropped to 15 mg 15 days ago, and went back up to 20mg per docter 8 days ago. Upping to 20mg made no change to my bms that had increased to 7x. I have since increased to 9x a day. I know I am going to be on Prednisone for a bit longer as I just had my second Entyvio infusion on Friday. As a rule of thumb, as long as I am not bleeding or getting very weak, does it matter how many times a day we go? Sleep is probably the hardest thing as some nights I have to get up every two hours. Just checking to see if there is anything I need to know about that merits upping the steroid.

I was leaning towards just dealing at this point, but I also sometimes endure things longer than I should, so I appreciate your response. I am ineligible for mesalamines now, and had the bad reaction to Humira. My doc has not mentioned 6mp. I want to switch docters, but am reluctant to since I am still in the loading dose for Entyvio. I don't quite feel ready to talk to a surgeon. I feel like I just got over my hurdle about Biologics. I go back to the GI on the 24th of February. Have my third Entyvio dose the same day. No recent stool tests, but the increase in going does directly correlate to decrease in Prednisone.

I dropped from 20mg pred to 15mg and started having bloody D, ended up having to go back up to 30 to get it under control. I have since got down to 10mg by going very slowly, like dropping only 2.5mg every 2 wks or longer.

Do you take it in the morning or at night? I take it only in the morning and don't have too many troubles sleeping (at least that can't be attributed to something else!)

I think another opinion is warranted at some point, but I understand it's a lot of time and energy to get that going, especially when you're not feeling 100%. You should be able to get your PCP or GI to call in stool tests. it's actually a good idea to get a calprotectin in addition to c dif and pathogens checked. The FCP can help with monitoring. If it's consistently decreasing, that's a good indication things are improving. it's not a scope, but it's so much easier to check more often & it can give an idea of how much inflammation you're dealing with.

Seeing another GI doesn't mean you have to stop your current plan. You can just consult, explain what you've done, and how your symptoms are, and see whether you feel like you're being offered any additional helpful information, or it may give you more confidence in your own GI's path. Same for a surgeon, a consultation only gives you the information, it is in no way committing you to having surgery. I started consulting with surgeons when I was on Entyvio, I knew I didn't want to waste any more time with trials, or worse, steroids. I met two surgeons, when I was ready (it may never come to that for you), I was able to schedule and I was ahead of the game because I had a surgeon I felt confident about & i had already done the legwork of figuring out some of the financial impact and timing. I was more informed. If I never needed surgery, it was really just an hour wasted between both meetings.

I broke down and called and asked to up my Prednisone. I kept feeling worse. More pain, having a hard time eating, starting to forget things, ect. He put me back at 30 mg. It's too early to tell if it is enough to make a difference. Good news is my GI nurse friend personally asked a GI docter she likes to take me on as a patient. He had his office call me, and I have an appointment for next week. They were going to book me for Wednesday, but I was afraid I couldn't get all my medical records to them that quickly. She (my friend) kind of freaked when she found out details of what is going on with me. I feel nervous about changing, really just because it's new. It's closer, but parking and traffic are much more challenging at this place than my other GI.