Interrupted Sleep

The sooner you can get settled with the new GI the better you will be. Let the new guy know that your old doc says he is submitting paperwork to increase the dose but that he had told you that weeks ago. I just went back and read the text he had sent to you and he said he had already submitted everything but obviously he never did (he even sounded annoyed that you kept calling about it).

If the new guy is willing to go for the increase in dose I think I would let him do it because I am not sure you can trust the old guy. Just not sure the new guy will do it without a scope

This make me angry that you have been treated this way and your old doc is leaving you stuck on prednisone. I have my fingers crossed the new guy is better.

So sorry you are dealing with this doctor!

Thanks. Saw new GI today. The switch is official. To keep seeing the old guy is just crazy in my opinion. The dragging of the feet is one thing. But the lying? I can’t take that. Not acceptable.

So. The new guy is going to send orders over to the infusion center for 10 mg of Inflectra every 6 weeks. He said to follow up with the infusion center in a day and if “you hear anything …like they didnt get my orders, call my office”. “This process can take a while. I don’t want to lose any time”.

So. That’s was encouraging.

He asked me when I had my last colonoscopy. I told him it was End of March 2021. We tried to get on that hospitals portal through my phone so he could review the results. My iPhone was being wonky. We weren’t able to get in. “Do you remember your results?’ I said, “Yes. He said everything looked good. No polyps. And this was the senior GI guy in that practice. It wasn’t my old doc who did it.”

Not sure if the new guy will contact the old guy for the hard copy results. I guess. Oh well. What will be, will be.

He pressed me for why I am switching doctors. I said “ I really prefer not to bash the old guy”. He said, “please tell me, I don’t want to make the same mistake.” So I told him.
Gently.
I didn’t say the old guy was a liar. I just said he was very slow to work with my insurance company. He would say he would get things done with Cigna, tell me he had sent the paperwork over to them …then Id follow up with Cigna, and it hadn’t been done.

So. Well I guess I did say he’s a liar, but it was implied. I didnt directly call him that.

I told the new guy my 5 mg infusion was just yesterday morning. So. Hopefully we can get the new dose through quickly. He said I have to be patient as working with the insurance companies is getting tougher and tougher. I said, I understand.

The big change here with the new GI is …I can tell he is not a fan of prednisone at all. He wants me to start tapering down asap tomorrow morning. Go down to 15 mg a day for a week. Then drop to 10 mg a week. Then 5 mg a week. Then get off. No matter what. He listed all the potential down sides to prednisone. Of which, I know them all from here. But the way he rattled them off….well….I was thinking to myself, I don’t think this guy will be prescribing me any prednisone down the road. I said, “well, what if things start to get bad while I am tapering?” Prednisone has been the only thing that has helped me to live a somewhat normal life when things have gone down hill”.

He said, “let’s cross that bridge when we get there. There are other drugs I can put you on.” “Some of those drugs can be expensive too. And the insurance company doesn’t like me prescribing those. But that’s what we are going to do”

I said. “Ok. Fine by me”.

I have a follow up appointment with him on July 5. Which would be the 4 week mark after my infusion. The last three infusions that’s about when things started to go bad, at about 3-1/2 weeks…so, that’s why I scheduled my next visit for then.

I asked him, “so you think the increase Inflectra dose is the right plan here? And he said yes. Based on what you’ve told me, how it works for 3 weeks, then stops working, that tells me an increase dose will probably get you where we need you to be. That’s the right plan for now for sure.”

So. The old guy was a liar. And a feet dragger. But he wasn’t a total moron. Lol.

Post Edited (Rusty Barr) : 6/7/2022 12:48:04 PM (GMT-6)

If the infusion center could submit to Cigna for approval, why didn't your old doc do that?

My infusion center does not handle getting the pre-authorizations from insurance -- my doc has to do that and once they get the PA only then can they send the orders to the infusion center.

What the new doc said does not sound right, but maybe your infusion does work with insurance to get the PA. Check with the infusion center and see what they say. If they don't work with insurance to get the PA, follow-up with your old doc and see if he submitted the paperwork and then check with Cigna to make sure they got it.

So sorry you are dealing with all of this. I am getting frustrated for you!!

That's good news!! Check back with them in a few days to see if it was submitted to Cigna. This is sounding more promising, but stay on top of it. You really need that increase.

Don't feel too bad about sticking with the old doc -- we've all been there. Sometimes it's so hard to believe that the person (doc) who has your life in there hands is not doing what is best for you that we stay with bad docs longer than we should. I keep reminding myself that a med student who passes at the bottom of their class is still called "Doctor". All docs are not created equal -- some are so bad I suspect they barely passed med school.

I’ve made another appointment with the new doc on Tuesday the 21st. I’m on my prednisone taper…been on 15 mg. I drop down to 10 mg in a few days. Last Monday the 6th I got my 5 mg Inflectra dose. I’m doing ok but not as well I expected. Usually after I get that 5 mg on Inflectra in me, I’m “normal” for three weeks. That’s been the pattern. I want to see the doc to see if there is another drug he can put me on to help me. I’m currently going 3 times a day. Brown Mush/loose is what I would call it.

I’m sleeping through the night, getting up only once in the dark for a quick Pee, then back to bed and asleep. Averaging 8 hours of sleep a night for a long time. That’s a huge blessing.

I go 2-4 x a day even in remission

Good luck Rusty....on both the new med and the tapering.

Hope you get the help you need with this new doctor.

Please let us know how it goes.

Clo

Hi. Went to new doctor. He’s trying to help me in getting insurance to approve the new higher dose of inflectra. Currently I’m getting 5 mg every 6 weeks. He wants 10 mg every 6 weeks.

Next week is week 4 since my 5 mg infusion. This is when things usually start to get lousy for me.

He is wanting me to get off the prednisone ASAP. But agreed with my taper plan of going down 2-1/2 mg every 7 days. This morning I took 12-1/2 mg. Tomorrow is day 1 of 10 mg.

He gave me a prescription to start budesonide. The first week on this he’s got me taking 3 pills a day.
He said we are going to use this drug as sort of a bridge to try and get me more firm stools (I’m currently going 3x a day on average …what I would call mushy/very loose)…until we get to the new higher inflectra dose.

I went online on drug interaction checker and they say not to take more than one steroid at the same time.

Your thoughts?

Post Edited (Rusty Barr) : 6/25/2022 4:49:54 AM (GMT-6)

My thoughts: your doctor knows what he's doing. Budesonide is mostly absorbed locally (90%) so it doesn't come with the same risks or side effects as prednisone.

Im hopeful for this treatment to help you through the pred taper and cessation.

q

Sara14 said...
Did he instruct you to start the budesonide before you're off the prednisone?

I always felt budesonide could work for you because your symptoms are on the milder side. I thought you tried it in the past and it didn't work though? That's not to say it won't work this time. I just thought I remembered you telling me that or posting it here a year or so ago.

I might have tried it before. Not sure. I think maybe the old “bad” GI did prescribe it once before and it didn’t work. But, THIS I DO know for sure…if the old doc did try me on it…I didn’t take it the way this new doc prescribed it…starting off with 3 capsules a day in the mornings for two weeks. I am 100% sure I never took a drug this way before. Not shocking to learn that the old doc was (once again) not up to speed. Sigh.
(The sigh is because I stuck with that old GI for so long. Argh)

My taper is down to 7-1/2 mg starting today on the prednisone. The 9 mg of budesonide is working great. I’ve been on it less than 7 days. Started that on 6/25/22. I’ve read where budesonide usually takes two weeks to work.

Well, for me, I felt almost an immediate positive impact. Same day. Will it get even better as I move toward the end of week 2 of it!?

Feeling better than I have in a long time. On average 2 “pretty normal for me” BMs now every day. Sometimes 3. Usually soft stools mixed in with some mush…but I’ll take that any day.

My insurance has changed from Cigna to PEBA Blue Cross Blue Shield. The infusion center has submitted the new GI prescription for 10 mg of Inflectra every 6 weeks into them for approval. The infusion center says that BC BS is MUCH easier to work with than Cigna. Praying for a quick approval. I’m do for my next infusion on July 18th.

Post Edited (Rusty Barr) : 7/3/2022 5:38:05 AM (GMT-6)