HealingWell
Search Close Search
☰

Interrupted Sleep

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2 3 4 5 6 7 8 9 10 11 12 13 14
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/7/2022 7:16 AM (GMT -5)
Today is day 1 of 5 mg of prednisone. New doc said to do this for 7 days then off all prednisone.

I’m still taking budesonide. 3 capsules each morning.
Tomorrow I drop down to 2 capsules a day.

Avg of 2 BMs each morning…soft stools mixed with mush. Some days I have another BM in the early evening. But this is the best I have felt in a long long time. No urgency moments during the day. Which is huge. Hallelujah.

Still waiting on BC BS to approve the new doc prescription for Inflectra. 10 mg every 6 weeks. Hoping to hear from the infusion center today that this has been approved. They are the ones chasing BC BS on my behalf.
Posted 7/8/2022 4:19 PM (GMT -5)
Fingers crossed! So glad you are feeling so much better!

But not so sure about dropping the budenoside while tapering off prednisone. Watch that closely.
Posted 7/8/2022 5:00 PM (GMT -5)
I agree with Flowers about the budesonide.
Posted 7/8/2022 5:47 PM (GMT -5)
Me too. Priority should be to get off pred...
Posted 7/8/2022 7:54 PM (GMT -5)
I agree about staying on the budenoside. I have used that for months at full dose with no issues at all.

Check in with the infusion center about the dose increase. I have BCBS and they approved all my increases within 2 weeks, That was a different plan than yours, but still shouldn't take too long once they get the request. Seems odd that the infusion center is doing this and not the doc. As I recall when my doc did mine he had to explain why I needed the increase.
Posted 7/9/2022 10:57 AM (GMT -5)
Today I dropped down, per the doctors instructions to 2 capsules of budesonide (from 3 a day).
He said do 2 capsules a day for 14 days. This after 3 capsules a day for 14 days.

I’m still doing pretty well in my opinion. Usually 2 or 3 morning BMs that are combo soft stool/mushy. Then good the rest of the day until the next morning.

I’m still at 5 mg of prednisone. He said to come off that after 7 days, from 5 mg to 0. The 13th of July will be my last day of prednisone.

The infusion center here in South Carolina has always submitted my inflectra dose prescription for approval. They did it with Cigna. Initially after the loading, I was getting 5 mg every 8 weeks. It would work great for 3 weeks, then not so great. Old doc said he wanted 10 mg every 6 weeks. Cigna denied the old doc’s request for 10 mg every 6 weeks. So old doc did a peer to peer with the Cigna doc, (after constant follow up and begging of old doc), and the Cigna doc said (according to old GI doc) they would only approve 5 mg every 6 weeks. Still. 3 weeks, very good, then not so good.

After totally losing faith in the old GI doc and his ways I Switched GI docs. New GI doc wrote prescription for 10 mg every 6 weeks. Also, he put me on budesonide. The addition of the budesonide has been a great thing for me.

Infusion center said it’s still waiting for approval from PEBA Blue Cross Blue Shield. I am due for my 6 week infusion in the 18th of July so I am praying this approval comes early this coming week, so I can relax about it.
I’ll contact infusion center again Monday morning and see if there is anything I can do to help expedite this.

Post Edited (Rusty Barr) : 7/9/2022 9:01:22 AM (GMT-7)

Posted 7/10/2022 1:54 PM (GMT -5)
So. This is week 5 since my last infusion of Inflectra 5 mg every 6 weeks. This is a week I have always been struggling in. This is why new GI has put in a prescription for 10 mg every 6 weeks.

Next infusion would be Monday the 18th. If it gets approved. Still waiting on blue cross blue shield. Sigh.

I dropped down to 6 mg on the budesonide yesterday the 9th. And already I can feel things starting to slide.
The 9 mg a day worked great for 14 straight days. During the 14 days I was typically going twice a morning. That’s it. Today, I was loose/mush at 4 am, 7 am, 9 am and 10 am. It’s 12:30 pm now. Not sure what this afternoon or evening holds.

I have another appointment with new GI on the 19th.

My question:

can I go back up on the budesonide to the 9 mg until I go see him. Or am I forced to stick with the 6 mg until then?

?

Post Edited (Rusty Barr) : 7/10/2022 11:58:34 AM (GMT-7)

Posted 7/10/2022 4:11 PM (GMT -5)
I would go back on 9 mg/day of the budenoside. That's the only dose I was ever on and is safe long term.
Posted 7/10/2022 6:59 PM (GMT -5)
Go on 9mg and stay on it till your infusion
Posted 7/11/2022 12:05 AM (GMT -5)
Agree with poopydoop.
Posted 7/12/2022 9:44 AM (GMT -5)
Jumped back up to 9 mg of budesonide in the morning. Immediately. I’m back to where I was. Much better. 2 or 3 mush BMs a day.

Thanks so much for your help here.

I now understand why it’s taking blue cross blue shield to approve of the Inflectra.
Infusion center sent over the prescription from my new doctor July 1st.
Called BCBS this morning. They said they haven’t approved or denied it because they want to do a peer to peer with the doctor.
He’s only in on tuesdays. He does procedures all the other days of the week.

So. I’ll be bombing his office today to get him to do that peer to peer.

I have hope because this new GI seems to be on the ball. If I was still with the old GI, forget it. He was a slacker when it came to stuff like this.

Post Edited (Rusty Barr) : 7/12/2022 8:27:15 AM (GMT-7)

Posted 7/13/2022 9:50 AM (GMT -5)
Hallelujah. Got a call from BCBS/PEBA yesterday morning. The new GI did the peer to peer yesterday morning and got the 10 mg every 6 week dose of Inflectra approved.

I think the old doc started the process to get the 10 mg every 6 week dosage approved with Cigna back in January. It’s July 13. Ashamed of myself for sticking with the old GI doc for so long.

I’m on the schedule at the infusion center for Monday the 18th. 10 mg of Inflectra.

Back on the 9mg daily of budesonide. 2 or 3 mushy a day. But that’s a heck of a lot better than I have been during weeks 4 and 5 of Inflectra in the past. The 9 mg of budesonide has worked great for me.
Posted 7/13/2022 10:50 AM (GMT -5)
Great news! Rusty, would you mind starting a new thread now that you are with a new gi & will be getting your infusions increased. This thread is so long it's getting hard to navigate, lol.
Posted 7/13/2022 12:48 PM (GMT -5)
Ok. Sure

This thread officially closed

smile
✚ New Topic ✚ Reply
1234567891011121314