Interrupted Sleep

Thanks guys.

Rusty Barr said...
It’s really depressing. I feel like I just keep “fighting with my GI and Cigna” and so I get bummed, and frustrated, and I get this attitude, it’s like, “oh, why keep fighting the GI and Cigna…this is my second GI since I was diagnosed in 2016 with UC…and this guy is “better” than that guy, for sure….and then i tried to find another GI several months back, only to find out from people I know, that all of them, they all are super busy in this area I live in South Carolina, and they are all short handed, and switching isn’t going to change anything, maybe or probably only make things worse, so just stick with this guy because he knows your history well, and if you switched and the next GI is WORSE you’ll REALLY be up a river without a paddle, and you’ll REALLY regret that, and you know, just live with the UC at this level, even though you know you’re not good”

It’s depressing. Frustrating. it’s just exhausting to keep pushing.

BUT, Yeah. You guys are right. That’s a terrible attitude. I’ve got to stop thinking like that!

Thanks.

I just want to remind you that you can get a second opinion with a new GI without "dumping" or even telling your current one. Then, if the new one is even worse, you still have your old one. I think your attitude and feelings are completely valid. You've been dealing with this for a very long time now. And you shouldn't have to keep pushing your doctor to do his freaking job.

Do you eventually get to a point where the prednisone course just stops working?
I’m at the end of the week of my taper where I am doing 12-1/2 mg daily. Tomorrow I start the week of 10 mg.
And it now seems like it’s doing nothing at all.

I’m loose or very loose 3 or 4x a day of late. And waking up around 4 am every night (morning) having to go as well.

Sigh.

Rusty,

I am sorry you are struggling. If I remember correctly you struggled right before your last infusion too. It's like its wearing off too quickly.

There were a couple of tapers where for me... When I got to 12 or 15mg dosage if Prednisone the Prednisone would just stop working. We'd have to increase the dosage back up to 40 for a couple of weeks and I would have to start tapering down yet again.. The last time that happened I ended up tapering by 1 to 2 mg only after my infusions -- (and my GI increased my Remicade amount to 10, decreased the time to every 4 weeks. He increased methotrexate to 20 or 25?) and I had to wait 3 months to start tapering weekly again. We were waiting for the methotrexate and Remicade increase to work.

When did you have your last scope? Have you heard anything from your insurance or the doctor about changes in dosage or timing? Has your doctor said anything about another antibody test?

The second opinion is a good idea--but you need for your current doctor to get your meds changed. I would be concerned about starting the learning curve and delayed treatment if I started with a new doctor. If I thought I might be changing--I'd go to the second and keep the first doctor working on your increase. I would not tell anyone anything. One way to do that is to ask for copies of your medical records in disc. format. You don't have to give an explanation. (I did tell the GI I was getting rid of it was for when I traveled-& in case something happened.)

Gosh, I hope he gets this to go thru. I can only imagine how frustrated you are with the tapering not working, the medicine wearing off too soon and your doctor. Hang in there.

Clo

Post Edited (clo2014) : 5/21/2022 7:03:02 PM (GMT-6)

Well, here I am again. Sigh.

I’m in the middle of my week of the 10 mg taper of the prednisone. And I am now very loose brown. No blood. No mucus. But very loose brown. Watery.

Two days ago, I really restricted my diet. Drinking a lot of water to stay hydrated. And because of the very limited amount of solid food, i only went 2x first thing in the morning, 1x early evening, and then waking up once or twice in the night to go.

Back on April 4th, I got all the way down to 5 mg on the last taper, got very loose, like I am now, contacted my GI, April 7, and he said go up to 40 mg and start a new slow taper. So, I did that. 40 mg got me normal and in remission. Pretty much immediately. Started tapering down 10 mg a week. Then, after the week of 20 mg, I dropped to 15 mg, May 1st. Did 15 mg for two weeks. Dropped to 12-1/2 mg on May 15, then…..DAH!…..started loosening up. Not crazy, but could feel the change coming. Sunday May 22, dropped to 10 mg. Now, May 24 and 25, very loose.

So, that new last course got me a little over 6 weeks of pretty normal. Then…

Argh! Here we go again.

I’ve read a bunch of posts here about people saying they get down to around this point of a prednisone taper and they start to run into issues. Around the 10 mg area. Then they start to struggle. Well, I’m officially in the club.

This is so frustrating.

As far as Inflectra. Im scheduled for my next infusion on June 6. I’ve been texting my GI every other day for an update on Cigna approving a dose increase. He says he wants me to get 10 mg every 6 weeks. Currently I’m getting 5 mg every 6 weeks, and that’s obviously not enough. There’s a clear pattern here with my Inflectra. I get the 5 mg dose, THAT day I tighten up, get normal, then after three weeks almost to the day, I start to loosen up. This has happened two consecutive infusions in a row, now.

He texted me back the other day and he’s said waiting to hear back from them. It’s ridiculous. He obviously is not pushing them like I need him to. I’ll keep texting him every other day….but…argh!!!

Beyond frustration with him. So. I feel like I am forced to change doctors. I can’t take his lack of effort here any longer. It’s like constantly pulling teeth to get him or his office to help me with Cigna. This pattern has been going on for years.

So. Yesterday I made an appointment with a new GI. Referal from my family doctor. But my first appointment with him is not until June 14. That’s the earliest I could get in.

Until then I’ll keep pushing the existing GI by text about Cigna. Maybe a miracle will occur and he’ll get through to Cigna. Either way, enough is enough. Im switching doctors.

So, back to where I am. Right now. what do I do between Now and my next infusion?

I don’t know. Today is the 25th of May. 12 days to the June 6th infusion. Sigh.

What do you think?

Maybe I go back up to 20 mg on the prednisone and see what happens? Or. Maybe it’s best to just keep weekly dropping down to get off this darn prednisone…(I’ve been on it at various doses (mostly low doses) since the last week of January I believe)..,and text my GI and get another med going…to help me get to that June 6 infusion?


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Post Edited (Rusty Barr) : 5/25/2022 8:02:35 AM (GMT-6)

I’ll start calling Cigna every day

Hi. It’s my doctor. And he’s slammed and notorious for dragging his feet when it comes to calling Cigna doing the appeal. To get him to call Cigna and get me approved from 5 mg every 8 weeks to 5 mg every 6 weeks. (He asked for 10 mg every 6 weeks and Cigna told him for now they’d only approve the 5 mg for 6 weeks). That took me begging him face to face at an appointment.

Just got off the phone with Cigna. Representative was very helpful. After being on hold forever. He came back on the line and said he sees the approval notes, where my doctor did the peer to peer and Cigna approved the 5 mg every 6 weeks. But he said that’s the end of the notes. According to what he sees in the system, my doctor has not made another appeal or contacted them in any way recently about my situation.

Can you believe this GI!?

So thankful I’ve already got a new GI. New appointment already set up for June 14.

Until then I’m texting my current slacker GI daily.

Argh!!!

Rusty,

Tell your doctor the Cigna rep does not see any request from your doctor to increase the amount to 10 or decrease the time frame. Ask who he spoke to.

Put it in the message so he cannot deny that you asked. Then call him. Tell him to call Today.

Did the rep tell you how to get this increased thru emergency appeal or authorization? You have to indicate to Cigna that this delay is detrimental to your health and may have long lasting health complications because of the inflammation and possible future scaring.

Clo

Rusty -- I had similar issues with my former GI. His office said they sent the appeal, but insurance said they didn't have anything. I asked insurance what fax number the GI should use and sure enough, the GI was sending it to the wrong number! grrrr Ask Cigna where the dr should send the appeal and give that info to him. He may be sending the appeal to the wrong place.

I would also push the GI into doing another test to check your levels right before your next infusion. If I recall correctly, the only time he checked your levels was right after an infusion instead of before which never made sense to me. That test is supposed to be done a day before the infusion to check for antibodies and your med levels. If you have high antibodies an increase in the med may not be enough.

It's concerning that you have to be on steroids to be functional after all this time. When I went through my 2 year path to remission with dose and frequency increases, I was able to stay off pred except at the beginning, but my doc upped to 10 mg pretty quickly so that may have helped me.

I hope you get some answers and relief soon. Push for the increase and also the test to check your levels. Good that you have an appt with a new GI. Ask him lots of questions.

I’ll get testing from new GI. I’m going to keep texting and pushing current guy for dose increase until then. But June 14…new guy takes over…and after learning what I found out this morning from Cigna. I am not happy.

The current GI is flat out lying to me. I guess he didn’t want to text me back and say I haven’t gotten to it yet. But still. He said I’m waiting for them to get back to me. Argh!!!

And he had the cell number of the peer to peer doctor he got the approval with in February. He told me she gave that to him.
He probably forgot he shared that with me.

So. It’s simply him being swamped and …mostly…him being lazy on my behalf.
Which is just awful.

I’ve always kind of defended him in my mind whenever I have questioned what he’s done. Or someone here has. (And rightfully so).

After that call earlier today with Cigna. I feel kind of “had” and somewhat betrayed.



I’m 59 years old. I’m a big boy. I’ll get over it. But it’s still very depressing when I think about it.

Post Edited (Rusty Barr) : 5/25/2022 1:34:36 PM (GMT-6)

Just my 2 cents — I’ve been in this type of situation before where the dr/prescriber telling me one thing and insurance telling me completely different. I always suspected it was insurance making it difficult enough with the hope I would go away and give up. But I’m pretty stubborn about this type of thing so I kept on them both. But it is SO frustrating to be stuck in the middle and basically powerless to really know who’s telling the truth. Also I think sometimes insurance doesn’t know who’s doing what or who has what information so if I were you I would keep calling Cigna everyday. I agree you should get someone’s name, email, phone and fax number at Cigna so you can be sure the dr is getting the info to right person Also I would push dr for the antibody test because Cigna may require it before they’ll approve a dosage increase and God knows you don’t want to wait another 8 weeks for that. Checking levels the day after an infusion is useless!!!

I am frustrated for you!!! Sorry you’re struggling. I remember that pain. I wouldn’t decrease the prednisone at all yet. Sadly you’re going to have to stay at a level where your health is halfway decent.

Rusty,

I am glad you have a game plan.

It's very hard to know if your doctor is lying to you and it's the last thing you expect. It's normal to feel very betrayed. When I found out I was too sick to do anything but after I felt better I was very upset ..then I just wanted to kick his a55. Sorry...well sorta. It's the truth. His laziness almost killed me. Everytime I change my permanent ostomy bag I think of him and wonder if I'd been alittle more outspoken if maybe I would not have had all that damage...and now my current issues. It's disheartening. That's why I nag you on here.

I'd still try to push this current doctor to do a serum check. I'd call him in addition to the messages. It's a shame you have to do this.

Gosh... That Prednisone is a problem. You have been on it too long, and your dosage keeps going up and down. You don't want any more damage in your colon but you need to get off that stuff. I am so mad at your doctor. Dumba55. My fear is that if you try the 15 mg it won't work... like last time... And then you went all the way back up to 40. I'd send a message to your doctor that you are not doing well (It sounds like you are going to the bathroom 4 to 6 times in 24 hours. That's not normal) and have to go back up to 20. (At 20 you were going 2 x a day correct,?) Tell him you think this increase is a direct result of not having the increased amount of medication..... in a timely manner. (But only say the last part if you really are leaving him behind. If you think there's any chance you may stay with him play nice and leave the timely stuff off.)

I'd still stay on top of Cigna. Don't speak to a regular rep. Run this thing up the pole and try to get contact numbers and stuff. I know that in my old job.. I did have agents that gave out their cell number, made or received calls and then did not notate the account.... So it's hard to say that the doctor is absolutely lying. The only thing to do is to both call and message them both every single day. Eventually one of them will get tired if it and see that you get what you need..... That or you will already be with the new doctor... But then Cigna might make you start over from scratch. Either way.... keep good notes.

Clo