Interrupted Sleep

I just snorted out loud, clo. That's amazing.

poopydoop said...
Tip for next time: when i have an appointment with my doctor I make a list of questions beforehand so that I do not forget something.

I do the same. When I don't I forget.

Ok. So. Good news. Sort of.
GI just called me on his cell phone. He had the peer to peer with a doctor at Cigna this morning.
That’s the good news.

The bad news in my opinion.
He said he tried hard for 10 mg of inflectra. Was on the phone with their doctor in the peer to peer for 21 minutes. They are willing to go to 5 mg every 6 weeks instead of every 8 weeks. And the Cigna doctor gave him their cell number. So. If that doesn’t do the trick than I am to get a stool test…then he is to call them back and they will approve an increased dose.

I asked. “Didn’t you tell them that I am having to take 5 mg or 2-1/2 alternate days of prednisone plus the 5 mg of inflectra?” “And once I drop down to 2-1/2 every day of prednisone …I get all loose?”

He said this is the route they will approve. So. He said. One step at a time.

Sigh.

Is there a chance moving to 6 weeks of infectra will do the trick?
I’m thinking…no. Because if it was frequency, then 3 weeks after my last infusion I drop down to 4 straight days of 2-1/2 mg of prednisone and start to have issues. Right?

I mean, if he told them accurately what’s going on, why would the Cigna doctor say let’s try 5 mg every 6 weeks on the infectra?

Your thoughts?

Post Edited (Rusty Barr) : 4/1/2022 8:23:25 AM (GMT-6)

It's possible just moving to 6 weeks might help, but it will take a few infusions to find out. Sounds like you are at the mercy of Cigna. The reason why is money -- 10 mg is going to cost them almost twice as much as 5mg:
10 mg x approx 7 treatments/year (52 weeks/8 = 6.5 infusions/year @ 8 weeks) = 70 mg total.
5 mg x approx 9 treatments/year (52 weeks/6 = 8.67 infusions/year @ 6 weeks) = 45 mg total.

Not sure that the doc can appeal an appeal. Keep communicating with him about exactly how you are feeling. What are your symptoms right now? Are you better than when you first started inflectra? If so, that's a good thing. You just need to get to the right combination for you to get to complete remission.

This UC is some kind of crazy thing to have.

Throughout all of this, (what I am about to type below), I’m on the Inflectra 5 mg every 8 weeks.

So, last weekend, I tried to taper off the prednisone. I was doing 5 mg and 2-1/2 mg alternate days and everything was going great. Many of my daily movements were solid soft normal stools.
Then I went to 4 straight days of just 2-1/2. On day 4 I started to get loose…Started to have to get up in the night to go…went from going just 2 or 3 times a day…to 5…no more normal stools…always loose or somewhat diarrhea. I thought, “uh oh, not good”. So, day 5, I took 5 mg and this week I’ve been back on the alternate day “5 and 2-1/2 plan”.

UC says “nope. Ain’t going for that now”.
Things not improving

So, now today, I’m going to start 5 mg every day for a bit to see if I can get back to “doing great”.

I really hate UC.

Post Edited (Rusty Barr) : 4/2/2022 12:36:55 PM (GMT-6)

clo2014 said...
Rusty,

I would go back up to the 5. Send a message to the doctor that you have to increase. You are trying to build a paper trail showing that you need more meds or a shorter time frame. Monday I would be reaching out to the insurance company. .

I'd try a different approach on the tapering. Go 5 for a week then decrease by .05 mg a week. It's easier to do if you received the different size dosage pills--if not get your doctor to call in a bunch of them. I have had to go that route before. It's a pain but doable. Also if you see that your body is resisting the taper...you really need to taper very slowly....or you'll have to go up and up on the dosage. One time I ended up back at 20 mg after I had tapered to 5 and had trouble with the rebound.

I am sorry you are going thru this. Hang in there!

Clo

Thanks so much!!
After doing 5 mg two days in a row, I slept through the night last night. Very loose D first thing this morning, but sleeping through the night without having to get up and go is a step in the right direction for me.

BTW I have plenty of prednisone in stock at different mgs.

Thanks so much for all your suggestions!

I’ll try 5 mg for 7 straight days. (5 more days consecutively)

Yikes. This is what happened to me. I had to go up to 7 and a half and then up to 10... And then start back down. I eventually had to wait til the week after my infusion to lower my steroids. Then I would try to lower one more time by .05 mg and pray alot.

You are probably right around your time for your infusion? A couple of weeks away?

Clo

Loose again today. 1 morning. 1 late morning. 1 at around 2 pm. And 1 at 9 pm. 4 movements so far today. All loose. Watery. Hopefully not one in the middle of the night.

Should I go up to 7-1/2 on the prednisone tomorrow?

Oh.. and if you have to do a stool test... Do it right before your infusion... Not right after. Timing is everything for me and that's when my numbers are higher....but others might have a different experience.

Clo

Rusty,
I would probably try to go up just a tad on the Remicade. The 7 and a half would probably do it. (I wonder if 6 or 6.5 would do it but.... I don't know what mg pills you have so it's hard to tell you what dose to try to go to. I had my doctor call in some 1 mg tablets so I could taper in a more controlled fashion. Then he called in some 2.5 mg and 5 mg also.)

I would also send your doc a message, get him to call in those other tablets if you don't have them...be prepared.... insurance might not want to pay for them. I used Good RX or something similar. And check in with insurance again. I am dumbfounded that they are not working with you better. I swear that insurance companies mistake kindness or someone's busy lifestyle and inability to call them for an excuse to roll right over a person. 👿

I usually try to go down .05 mg every 5 days if possible. If you have a hard time go back up .05. Please remember...the closer it is to your infusion--you may not be able to taper.

Let us know how it goes. 🤞

Clo

Personally, I wouldn't mess around with prednisone like this. You could end up getting your body so used to these low doses that you could have an extremely hard time getting off of it and do some lasting damage to your body. Rather than slowly increasing, discuss with your doc what dose to start with and slowly decrease from there.

Have you ever tried Uceris (budenoside)? That is an oral steroid but it doesn't release until it's in your colon so it's not as systemic as prednisone -- more like a topical for your colon. That might work better for you though it can take a couple weeks to kick in. The first time I took it it was like a miracle drug, but it didn't work as well the next time I took it.

I forget -- are you on any rectal meds? If not, unless there's a reason you can't use them, they really work wonders. My doc had never mentioned them to me, but when I read about them here (thank you Quincy) he prescribed them after I asked for them. For some reason a lot of docs don't prescribe them unless requested.

Plus the messages put your doctor on notice that what he is recommending is not working. And they provide that paper trail for the insurance company.

In the past when I have contacted my insurance and I have specifically stated the dates of correspondence to my doctor... They have approved my dosage change. One of the insurance reps said that without those messages the insurance company might think your symptoms aren't that bad-because if it really is an issue people will make those messages and calls. (That statement bothered me... But it gave me insight into what the insurance company was looking for)

Absolutely on the Imodium. And remember that when you start having issues to contact your doctor to see if he wants you to go up incrementally or increase to 10 or 20 and start coming back down. On weekends when you might not have access to your doctor get clarification on how he wants you to handle this flare until you can get with him.

I have done it both ways. I prefer going up to 10 or 20 and then try very slowly coming down. (Gosh I wish doctor's could experience what we experience. They'd fight much harder for us if they just understood...although they do help more if you are the noisy wheel...)

Let us know how it goes.

Clo

Post Edited (clo2014) : 4/6/2022 11:26:11 AM (GMT-6)