Interrupted Sleep

Showing improvement is great!

Don't drop from 2.5 to 0. Alternate 2.5, 0, 2.5, 0, 2.5...
I think it's too steep a drop tho...but alternating would be best, then see how you do.

q

Rusty,

Great news!

Sounds like a plan. Remember that the further out from your infusion you are when you taper .. you might struggle alittle.... So you may have to do just what you are planning... Go back up to the last dose that helped.

Did your doctor ever get your new amount approved?

Crossing my fingers that this works.

Clo

Your thread title called me >_>.

I read most of this thread yesterday but then was too tired to reply. Suffice to say, I am very glad for you that you have solved the problem and I hope it stays that way. There is nothing under the sun more tiring than interrupted or disturbed sleep. Dealing with that at the moment. That said, some nights are better than others but even on the so-called 'good' nights, I still feel shattered, so I think there is more to my disturbed sleep than just Crohn's. But urgency and abdominal discomfort at night sure isn't helping either.

Also, reading about some of you people's pred tapers, I'm not surprised I always relapsed on pred! A standard taper was 8 weeks, starting at 40mg and reducing by 5mg each week. In retrospect that was clearly too fast - way way too fast.

Update
I’m doing just great since right after my last infusion of 5 mg of Inflectra March 10th. That afternoon, things got great and they’ve been so since. Thank you Lord!

I am Still doing the slow prednisone taper as well. Right now I’m in the midst of the alternate day 5 mg/2-1/2 mg dosing.

This Friday the 25th I start the…
“full week of 2.5
Next week...try stopping. If it goes well....stop. If symptoms come back go back to the 2.5 alternating 2.5 and 1 for a week.
Next week, alternate 1 and .5. If symptoms return go back to 1 or .5 whichever stops the symptoms. You may have to play around with this for awhile. If your symptoms return you go back up the ladder until the symptoms stop.”

Thanks again for all the encouragement and help here. What a blessing.

Argh. So, Thursday March 24th I started my “7 days of 2-1/2 mg prednisone every day”…of which…the plan was after 7 days to get completely off prednisone.…and…just roll with the 5 mg of Inflectra in me.

The last two days, things have started to loosen up.

Last night I woke up at 2:30 am having to go. Not diarrhea, but loose stools. But still, it’s the first time I have had to get up in the night to go in a long time.

Yesterday, Sunday the 27th, I went 3 times in the morning. Then the middle of the night trip.

Prior to this weekend, since my early March infusion of Inflectra appointment, things have been just fantastic.

So. Not crazy bad. But I’m definitely not feeling the excitement about stopping the 2-1/2 mg of prednisone this week, as I was.

Sigh.

It's either not working (you can't really know if you're on prednisone) or you need a higher dose and/or more frequent infusions. Sorry.

Rusty,

Personally I would increase the prednison for now. Then I would pressure for that higher dose and/or shorter timeframe. Since you are responding I think the medicine is working--you just aren't getting enough and/or the time frame is too short. I think it's both. The timeframe is only about 2 weeks and then it starts to decline..correct?

Hopefully your GI gave you refills on the
Prednisone? (Mine does it for 2 additional refills for a 30 day supply for a period over 3 months--but I have been going to him since 2015. Still--I had to ask repeatedly.) I also refill each of those monthly prescriptions...that way I have them for "just in case" things go south over the weekend.

Your GI needs to fight for the increase dosage. If he tells you he doesn't do that ask him why? It's his job to ensure you have the appropriate treatment plan. You do not want to have scarring in your intestines due to inflammation caused by some GIs unwillingness to perform due diligence. It's also (unfortunately) our responsibility to be our own "advocate" for ourselves and make it happen. (It astounds me the way we have to tussle with some of these physicians just to do their darn job!) You will probably need to reach out to your insurance also. Increases in dosages and decreases in time are things that I have been forced to involve myself in multiple times. Phone calls, written notifications requesting increases/decreases are a must. (If it's in writing via the patient portal or letters to insurance...it leaves a paper trail. You need and want that paper trail)

I hope you get this under control. You are so close... Just alittle more tweaking.

Clo

Post Edited (clo2014) : 3/29/2022 4:23:34 AM (GMT-6)

Let us know how the appt goes! Push for the test right before your next infusion. I suspect you are going to need it for your insurance. Your dr HAS to go to bat for you with the insurance.

If I were you I would call your insurance today and ask why they refused the increase and what you need to do to get the increase. Explain how sick you are and see if whoever you’re talking to has some compassion. If you get nowhere ask for a supervisor. The squeaky wheel gets the grease. Since you improve so much right after the infusion I suspect the inflectra will work for you at a higher dose/more frequent — I have no clue which tho. But hoping your dr will and will work with your insurance for you.

Called Cigna this morning. Before my GI appointment today. On hold with Cigna for a long time. Sigh.
The initial Cigna representative said the denial letter on 2/3/22 came from the “pharmacy department”. So, the long hold time was him trying to get someone on the line from that department. The letter I received says the doctor or me…can make an appeal. The “run around” on the phone with Cigna begins. The “Cigna pharmacy guy” gets on the phone and says he’s having trouble finding any information related to the denial letter.
Then, after a long hold, He says I need to work with the “medical team department”, that’s where the denial came from.

I’ll post more details as I proceed here. Maybe this will help someone on a similar quest some day.

poopydoop said...

Also I don't entirely follow the comment about burning out your adrenals. Prednisone shuts down the adrenals, so they need to reactivate as you wean off it. The dose at which this happens is around ~7.5-10mg.

So. If I’m alternating my prednisone dose daily, between 5 mg one day, then 2-1/2 mg the next…(this is what works for me)…that’s “ok” to do that for another 5 or 6 weeks or so?

My next infusion is early May. Bugging the GI to up the Inflectra to 10 mg….From the 5 mg every 8 weeks dosing like I’m on now.

I saw him again a little while ago. I tried to “nicely/but aggressively” express my frustration that he said he would call Cigna in my last appointment to get the 10 mg Inflectra dose approved and …he didn’t do it.

(In a weird way, I was actually hoping he would say…”i tried, but they shot it down over the phone”.

But. Nope. He didn’t even try. Or at least that was implied by what he said in the conversation.

Today he promised me he would get it done. Sigh.

“I’m calling them this afternoon for you. I will make it happen”.

I could feel my blood pressure being up from that point on. Argh.

Also, before everyone here (you are all fantastic btw) …but before you start telling me I HAVE to find a new GI. Trust me. I have asked around. Even got a Referal from my family doctor. He gave me the Referal. Then I spoke with a nurse who works in that office…she said this guy only works mondays…the other days he works he’s doing procedures in the hospital…And he is constantly slammed…And his bedside manner is awful.
So. To me. That is way worse than my current guy. So I have backed off the search. For now.

(Oh. And. Apology in advance if my “length of time on prednisone question” is repetitive. I know I’ve asked before. I’ve just heard so many horror stories about long term prednisone use…it scares the crap out of me. Pun intended.

Post Edited (Rusty Barr) : 3/30/2022 12:05:00 PM (GMT-6)

HaleyA said...
Did you not discuss continuing taking prednisone with your doctor at your appointment today? What did he advise?

Bad me. I didn’t bring it up (sort of) and he didn’t either. Whether this was ok to stay on prednisone this way or not.
Alternating days of 5 and 2-1/2.

Why I say, “sort of” was because, when at first, the nurse came in to take my blood pressure, before he came in, I told her how I was taking the prednisone, alternating the 5 mg and the 2-1/2 mg every day. She wrote that down on my chart. Then, before he came in to the room, I heard him outside my door reading her notes outside aloud. He was talking in a low voice, probably didn’t think I could hear him through the door, but I could.

Then when he came in, I immediately attacked him (nicely) on Cigna and Inflectra. To me that what was the most important thing today... Me finding out if he called Cigna and did the peer to peer, since my last appointment (he hadn’t), and me asking him nicely but aggressively why he needs to do that. Because I may be very wrong here, but I think the increase dose of Inflectra, if he will get that approved….I think that will get me off prednisone and in to remission.

Then in my frustration, learning that he had not called Cigna last month…and my frustration with him over that. I forgot to ask him about the way I have been taking the prednisone of late. If that’s ok.

But I did show him my diary. How, on the day I got my last infusion, while I was on 5 mg of prednisone the 7 days before that, how immediately, that afternoon, I got into remission…and then showing him the diary…how i tapered down…and how, once I got to 2-1/2 mg four days in a row this past weekend, I started to get loose on the 4th day, and I felt I had to go back to the alternate days of 5 mg and 2-1/2 mg to tighten back up…and he didn’t really react to that. Other than to say, he understands why I believe the increased Inflectra dosing will get me into remission, and also, that he would call Cigna this afternoon. “I promise you I’ll do it”.

Well, it’s nighttime now. No notification if he did indeed call them or not.

I’m planning on checking with his office insurance person in the morning for an update.

This is like a bad soap opera.

Post Edited (Rusty Barr) : 3/30/2022 7:11:13 PM (GMT-6)

Rusty ... I suggest you check with the doc every day or every other day until he gets the increase approved. I also think you probably need to get the infusions closer together, but try the increase dose for a couple infusions and then reevaluate. 10 mq/4weeks is the max and it's not uncommon so insurance should approve.