Interrupted Sleep

Ugh.
Doctors office just called. Nurse said Cigna won’t approve the increase to 10 mg on the Inflectra.

I’ve got an appointment to see my GI coming up soon. February 22nd.

But I’m wondering…
Now what??

Post Edited (Rusty Barr) : 2/15/2022 3:38:11 PM (GMT-7)

Yep....I agree. Your are gonna have to try to coordinate between your insurance and your GI. I was extra nice, blamed it on not knowing the process and concern for damage to my GI tract, apologized a bunch and reassured them that if they didn't get back with me by their time frame that was not a problem because I would be frequently following up.

The issue I ran into--insurance didn't want to pay for another trough level test because my level was at a level that should have been working per the 1st test. My GIs assistant wasn't very good about following up with the insurance until I started calling.

BTW-your insurance should have an emergency approval process for people that are suffering from detremental symptoms that could cause permanent damage. (I had to ask about that and have them send me the process via email. It wasn't in the book and they did not volunteer the information.) So I started chasing that process while I had the GI dispute the 1st decision. I was trying to get it completed by my next infusion at 8 weeks. We just barely made it but I was on the phone daily.

My concern is the timing of that one test...

Oh...and years ago...we had an insurance lady that came to work for me..(1998?) She said the company she had worked for gave her a "bonus" for cases that she could turn down. I don't know if that's true or not but it's always made me wonder . Even if it was a looooong time ago.....

Clo

It’s day 18 of prednisone 10 mg.
I’ve got the GI appointment tomorrow morning.
Instructions by him were to stay on the 10 mg until “normal” …before dropping down to 5 mg.
Well, I’ve never got to “normal”. Regardless of whether I take all 10 mg at the same time (and I’ve experimented with different times)…or if I take it at 5 mg and 5 mg later in the day …I can’t seem to break the cycle…which is…
1 or 2 soft/loose during the days, then 2 or 3 very loose in the middle of the night.

To me, that’s not “my normal”. That’s why I have stayed on the 10 mg. It’s been this way since I did the drop down from 20 mg to 10 mg. I did 9 days of 20 mg before dropping down to the 10 mg. At the end of the 9 days of 20 mg I was doing great.

I am getting sleep. On a good run there. Falling asleep well. Averaging 8 hours of sleep.
So that’s a Praise report.

The other big topic for the morning appointment is Cigna’s Inflectra 10 mg every 8 week denial last week.
My next infusion was scheduled for March 10. That’s been cancelled. But can be rescheduled.

In talking with the insurance lady at his office she told me he doesn’t want to do a peer to peer appeal of the 10 mg every 8 week decision. I don’t know what he has up his sleeve.

Personally, Since the Inflectra worked during the loading doses, I’d like to stick with it a while longer before I throw in the towel on it. I’m going to try and get him to write a 7.5 mg 8 week dosing prescription. Try and get that through Cigna.

I’m also going to ask for the Trough level blood test paperwork, so I can get that done March 9.

But if he’s going to pull me off Inflectra and he wants to put me on another drug I guess that point is moot.

I’ll report after tomorrow’s appointment.

Sigh.

Post Edited (Rusty Barr) : 2/21/2022 6:41:58 AM (GMT-7)

I second moving back up to 15 mg.

I worry your dr wants to keep the status quo or move you to another med. hopefully he doesn’t want to just leave you where you are. You have every right to stick with inflectra if you want. But not at the current state of dosing.

Let us know what happens tomorrow.

So. Had my appointment this morning.

Told him where I am at of late.

He wants me to drop down to 5 mg on the prednisone for 10 days starting today. I said “what if things get worse. If I get a lot of D”. He said “we don’t want to burn out your adrenals. Text me if things get worse and we will go from there. But you’ve been on 10 mg for 18 days now. Following the 10 days of 20 mg. And before that the 6 days of Medrol. Let’s see what happens. I prefer not to have you on prednisone that long. Let’s get the inflectra working. That’s what we want”.
(My paraphrase).

I asked about the 10 mg 8 week denial on the Inflectra from Cigna. He said “I really want to do that 10 mg next infusion. I don’t want to go to 7.5 mg. Let’s get the 10 mg approved. I’ll do the peer to peer with Cigna to get it through.”
I told him my 8 week appointment was for March 10. I’m concerned we are running out of time. He said “we can get it to work”.

I asked about doing the Trough test on the day before the next infusion. I also asked why we did the last test about a week after my last infusion…why did we do the test then. He said “I wanted to make sure you didn’t have any antibodies to the Inflectra. You built them up against the Humera. I was concerned it may happen with the inflectra. Your last test showed no antibodies so that was really good news. Had you had any antibodies they would have shown up in that test when we did it”.

So I said how about doing another test right before the next infusion? He said “no we don’t need to do that now”. “Maybe later. Not now”.

So. That’s it. Now I’m going to calling his office everyday to find out if he’s done the peer to peer.

I really don’t want to switch doctors. But I AM bummed that I had to see him to get him to get him to agree to do the peer to peer with Cigna on the 10 mg of Inflectra.
In my opinion, when he got the denial letter, a week ago, he should’ve immediately started moving on that.

Sigh.

Post Edited (Rusty Barr) : 2/23/2022 1:58:06 PM (GMT-7)

You NEED to measure the trough levels. I thought they didn't test for antibodies last time because your infliximab levels were high immediately post-infusion ( which they possibly would be even with antibodies).

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.

Do alternating taper...!
q

When I am down to 10 and I am having issues going from 10 to 5 I either alternate days (one day with Prednisone then one day off), or go down 2.5 mg per week alternating.

Examples....
Sun 10, Mon 7.5, Tues 10, We'd 7.5, Thurs 10, Fri 7.5, Sat 10
Next week
Sun 7.5, Mon 5, Tues 7.5, Wed 5, Thurs 7.5 Fri 5, Sat 7.5
Next week
Sun 5, Mon 2.5, Tues 5, Wed 2.5, Thurs 5, Fri 2.5, Sat 5, Sun 2.5
Next week...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.

Someone else posted another way to do it above.

With mine, I am cutting tablets in 4ths and 8ths and then slivers. It's crazy but sometimes I have to do it that way. I've thought about just licking a pill when I get to the 2.5 and below stage...it's frustrating. It turns into powder.

I hope this helps.... I know that I am going to be doing this. I've developed an obstruction and am now on 80 mg. For 3 days and then going down gradually. 🤪🤪 Crazy fun times ahead.

Hope you feel better soon and have a successful taper. Is your doctor willing to give you refills while you taper? Sometimes they will call in perscriptions for different strengths...like 10-20 mg, 10-5mg, 10-2.5 mg and 30 1 mg tablets. My GI did something like that. I am unsure of the number if pills. And it did cost more cause I had just different doses. So now I just cut my pills..

Clo

Clo

Thanks guys

No concern about how long I’ve been on prednisone overall? Today is day 36 of some level of prednisone dosing.
(Details in recent thread post. Two days ago).

-

Post Edited (Rusty Barr) : 2/24/2022 8:57:03 AM (GMT-7)

quincy said...
I know someone on it for 7 years...and one full year to taper off with the above method because she couldnt get off it any other way. Screwed many of her joints. Taper slowly so that you're not yo-yoing up to higher dosage and constantly trying to taper with the same results.

q

Your example of someone on it a long time and then having joint issues was NOT encouraging.
I was hoping someone would say “two or three months is not an issue”. Lol.

Anyway. Thanks Q for your input. Much appreciated!

Tomorrow is the end of 7 days of 5 mg prednisone Then I come off.

6 days of low dose Medrol
Then…
9 days of 20 mg prednisone
20 days of 10 mg
1 day of 7.5 mg
7 days of 5 mg

Post Edited (Rusty Barr) : 3/2/2022 9:01:48 AM (GMT-7)

You weren't on a high dosage of pred so it shouldn't be a worry. Starting at 40 mg is more common for UC and tapers usually are 6-8 weeks. Last time I had to go up to 60 mg and was on it about 4 months. I haven't had a bone density scan since then so I don't know what kind of damage it might have done. I had been on pred a few times before that last time so I guess I should get a scan done.... one day ;)

If 10 mg/8 wks wears off too soon, but you get good response the infusions can be more frequent (6wks or 4 wks).

Good luck!