Interrupted Sleep

Current GI just texted me back.
Verbatim.
“I’ve already requested an increase with Cigna. Waiting for a response. I’ve already left a message on the cell phone of the Cigna doc as well. The new order has already been sent to the infusion center. Waiting for Cigna to approve”.

Sheesh.

So. Not sure now who to believe. This GI is probably telling the truth and cigna just sucks.

I’ll bug Cigna in the morning. Tell them what he just texted me.

I’m still going to go to the new GI on the 14th of June. Maybe he has some new insight to get me back to remission

Hard to believe I was in remission from September 2016 (soon after diagnosis) all the way to January 2021. Never really took it for granted. But. Boy. Those were the days. Then it’s been a roller coaster since. Certainly, could be far worse, but I always feel like, at times, I’m right on the cusp of remission, I’ll get three or four weeks normal, then I have a set back. Argh.

On a similar front. I moved my self back up to 15 mg on the prednisone this morning. I’ll give it three days and then move up to 17-1/2 mg if I have to.
Today was much less urgency. Only went once this morning, first thing, and once this afternoon at 5 pm, so far. But still very loose brown watery, both times.

Sigh.

Post Edited (Rusty Barr) : 5/26/2022 2:52:21 PM (GMT-6)

Hi. Not sure why I started getting real loose again.

My guess is (hoping it is this simple) the Inflectra dose is not enough. And therefore the prednisone is trying to do all the work once I get to week 4 after my infusions. Because, the last two infusions, I’m great from the afternoon of the infusion, and then great for three weeks. And as I drop the prednisone dosing in the taper…coinciding with week 4 or later, after my infusion date, once I get down to about 10 mg I start to have loose issues.

My diet is pretty consistent. I’m a boring eater. Lol.

I think the priority right now is to get the dose increase approved of course, but also, to get the very loose BMs under control. I think I need to move up on the prednisone until I get to the place where I’m not so watery.

Thankful I am seeing a new GI on the 14th of June. I need a new doc badly. I’ve got to get some new input on my situation and get back into long term remission.

I’ve called both Cigna and the infusion center today. Based on the things they told me, I am 99% confident now it’s this current GI being lazy and not doing what he needs to do to help me get the Inflectra increase approved. He texts me what I want to hear, but doesn’t do any actual follow up when it comes to getting Cigna on track for me. He just doesn’t want to deal with Cigna or the infusion center. So. I’m now sure I’m doing the right thing…Getting a new GI. The current guy is very friendly, excellent bedside manner, willing to spend some time with me on appointments…but he gets an F when dealing with the insurance company detail and follow up …that’s a part of his job. And that’s really hurting me…and keeping me from getting the needed relief.



Until the 14th, I’ll keep bugging the current GI. Maybe he will do what he’s supposed to do early next week.

I really hate being on prednisone for so long. Even though it’s been mostly low dosage, I’ve been pretty much on it, with a few breaks here and there for about 4 months. And I know that’s not good. But right now, my options are just, pretty much zero. I’ve got to use the prednisone to live a somewhat normal life, until I can get on the right dose of a maintenance drug. Whether that’s Inflectra or something the new guy wants me to go to.

I went to 20 mg of prednisone this morning, Friday, May 27th. Immediate positive reaction. Had a BM at 3:30 pm that wasn’t perfect. But things are tightening back up for sure.

Thanks so much for all your input.

Post Edited (Rusty Barr) : 5/27/2022 1:18:31 PM (GMT-6)

Thanks.

I was told by someone at the infusion center (I think it was an NP there) that if I get an infusion of 5 mg, and then Cigna was to improve a higher dose, say, 10 mg total on infusions, I could immediately come in and get the difference dose. To get me on “plan”. So, let’s say the current GI continues to be slack with all this approval stuff. I still go on June 6, of course, and get my 5 mg of Inflectra, then I go to new GI on June 14, and he’s not a slacker, and he gets Cigna to approve the 10 mg dose, let’s say, then I could immediately go back to the infusion center and get the 5 “catch me up” dose.
True? Anyone know?

Rusty,

That's what I was told would happen to... That I would get another dose. It did not happen that way. We had to do a new scope, new trough level test, and by the time it was approved it was right at the old 6 week time frame with the new doctor. So it actually ended up being 12 weeks before it was all changed. Then it took me 8 months on the 4 week schedule to go into remission and get off the Prednisone. And during that time frame is when we added the methotrexate and kept upping the amount to 25 mg a week plus daily zofran to keep food down....MX was to help with my symptoms plus drive down my antibodies to Remicade. It was over a year after remission and another scope with the new doctor before we started thinking about moving the time frames to 5 weeks, then 6 weeks, then 7 weeks and finally 8. Then we started lowering the dosage back down to 5. So I know what you are hoping for happens. It just took me almost 2 years to get it to happen after I started the new dosage amount and timeframe. The new doctor upped my supplements...Vitamin D to 10,000 a day, curcumin to 2 pills, probiotics 2 times a day, folic acid 1 x a day.. glutamine twice a day. I was spending over 200.00 to 300.00 a month on supplements. We eventually got that down too. But gosh it was a long road. The supplements and Methotrexate took yet another year to get down to lower levels.

CcinPA is correct. The authorization department did not post their info on the customer service side until after I was calling the 2 departments twice a day. (4 calls a day) It was a nightmare -- but the Prednison was not working correctly and I was up to 80 mg a day. I couldn't get it down because I would start flaring. The documents that the docs sent in did not get "imaged" to my account until towards the very end of the approval process. Then suddenly they were there. The insurance company did send me copies showing the original doctor was sending in his paperwork just a few days before my infusions.... The fax machine timestamped them. That's how we figured out when he sent information to the insurance people. Plus once I started talking to who he (the old doctor) was talking to (plus my customer service agent) the process started going smoother. The new doctor then had the name and phone number of agents already working the account so when he took over it did get better.

It was a rough time. My old doctor really resented me at the end because he knew I was very upset and that I was double checking him. He told that to the new doctor... So the new doctor probably felt like he was walking into a mess. The new doc asked me about how the situation got that bad... And I said I didn't know, I was just trying to expedite the process and stay on top of insurance to "help" the doctor. I was scared the new doctor would stop helping because of the old doctor. It was a very tricky time. I wanted to bash the old doctor but did not do it. I walked on eggshells for a couple years with the new doctor. Stressful

Saying prayers this gets resolved quickly.

Clo

I'm so glad you decided to see a new GI. I really hope he is better. Keep us posted.

There are no hard and fast answers. I never aimed for normal on prednisone because in my case that would require high doses for long periods, but high enough to keep me functioning (able to work and sleep and not be incontinent) while I wait for other meds to work. Others aim for 0 symptoms.

Rusty,

I think you should leave it at 20 until after you have had your infusion and seen your new doctor.
You haven't said anything about pain, blood or mucus... Inching up and going back and forth eventually made me go up to 80.

Your doctor needs to get you on the correct dosage and timeframe on your infusions. If they do you might be good to go. If you are still struggling and the increase/decrease does not work....they may add a second medication for "dual therapy ". It's different for everyone.

When we added the methotrexate...that's when I went into remission and was able to get off the Prednisone. In the beginning of my dual therapy I took a higher methotrexate dose for about 8 to 10 weeks and during that time I was able to drop Prednison from 80 to 40, 40 to 20, 20 to 10. Then we started a slow taper with no or little back and forth. At 10 we went down very slowly. My GI tracked my infusion trough levels and when the Remicade trough levels went up to almost 30 and my antibodies were down to 2.... I didn't have as much of an issue with tapering.

Also.....methotrexate is usually taken at 15 mg once a week. We started off higher at 25 mg once a week for 2 weeks, then 20 mg once a week for 2 weeks and then down to 15 mg a week. Currently I take 4 (2.5 mg) tablets once a week. It makes me sick....Headache, chills, nausea, vomiting, confusion. I tolerated the higher dose as a temporary situation for 8 weeks. I thought I could tolerate that...8 weeks isn't that long of a timeframe. (LOL) My current dosage - I still get about 24 to 48 hours of illness but it's not as bad as before. We monitored blood levels those 8 weeks for kidney/liver function. (Every 2 weeks) I would love to not take methotrexate...but so far it's still a necessity. I consciously decided to take MX on Friday at 3 pm. I would be sick Friday night, Saturday and Sunday....by Monday I could drag myself into work again and make sound business decisions.. It was a hassle. The higher dosage caused brain fog and forgetfulness. It's better at the lower dose but not completely gone.

Remicade and Methotrexate are both nephrotoxins. They can mess up your kidneys and your liver. It's very important to have your blood levels checked...even if you only take Remicade or are on a dual therapy. They check mine right before every infusion. (I went into acute renal failure after my last surgery--they are still unsure if it was the anesthesia or the Remicade and MX--or a combination of it all. My kidneys recovered and my egfr went from about 40 to up to 85 and is holding there)

Remember though--every one is different. You might be able to have a completely different medication schedule with successful results. You might not even need a second medication if your doctor's can get you on the correct dosage amount and timing.

The doctor just needs to get the dosage corrected.

Clo

Post Edited (clo2014) : 5/29/2022 1:39:44 PM (GMT-6)

Yeah, I'd stay where you're at if you're not in much pain, not seeing blood and not having many BMs.

My current GI has not got anything to Cigna. Cigna has not received any new dose paperwork from my current GI. Yesterday I was trying to continue to push for this. Zero success on my part.

I still 99% believe the problem here is my current GI not wanting to work with, or chase, for the Cigna peer to peer, to get my dose on the Inflectra increase.

Now I’m wondering. Maybe I should just NOT go and get the 5 mg dose of Inflectra on Monday June the 6th. This would be my 6 week infusion.

Maybe it’s best to go to the new GI doctor on June the 7th and see what he wants to do. Because if I get the 5 mg infusion on the 6th and he wants to completely change my “road map” at the appointment with him on the 7th. Well, that infusion on the 6th might push out the time table on “his map”.

Thoughts?

Post Edited (Rusty Barr) : 6/1/2022 4:35:51 AM (GMT-6)

I agree with Susie. I wouldn't cancel the infusion. Really doubtful that a new GI will immediately order a new dose without a scope. I wouldn't even want a new doctor to do anything without him having more knowledge of my case and condition.

Since you said the new doc only has hours 1 day/week one of the questions you should ask is how available is he to answer questions or change meds through a patient portal on the other days of the week.

Did you ask Cigna for what fax number your current doc should be using to send the request to them and relay that info to your doc? Most doctors have a nurse or an assistant do paperwork like this. If your doc is trying to do everything himself I don't know how he can possibly keep up with everything.

Rusty,

If it were me.... I would do the infusion. There's no guarantee on the new doctor. I think that if he is a good doctor performing due diligence he will do a scope before he will give you recommendations on your disease treatment or medications....so expect delays with the new guy.

Keep updating your current doctor about the amount of Prednisone you are on via the portal.
Continue to work with your current doctor to get the increase approved. Also contact the insurance company. Tell them you want to speak to someone who can actually help you. It's imperative to get names and telephone numbers and to keep speaking to the same people.

I think that the delays are being caused by both your doctor and the insurance company plus the difficult communication process with different people/departments and not being able to speak to the same group of people. Think of the thousands of people with an insurance company, now imagine how much money they can save if they slow play biologic medication on even half of them. If you read your heal are handbook it should give you a process for things that have a negative impact on your current or future health and emergency authorization. My booklet even contains a complaint number for emergency authorization that is not going well.

Clo

I'm very proactive and I write letters to insurance companies, cc the insurance regulation department in my state, the attorney general and mail them return receipt. I also call the attorney general to see if I can get anyone to help me. After a few calls they will usually reach out to my insurance company and then... Things have suddenly been approved. But... I am not a patient individual anymore and I absolutely do not want any more inflammation to impact the con I have left. Perhaps other people will have better) different recommendations for you.

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In thread title …it now says “missing key value”

?

At infusion center now. Getting my 5 mg 6 week dose. In conversation with both the nurse practitioner and a nurse that has worked there for 16 years. After I told them how things have been going. They both agree the dosage is wrong. They said almost every UC or Crones patient they have, gets 7.5 mg or 10 mg of Inflectra and they get it every 4 weeks or every 6 weeks. And they fact that the drug works well for three weeks, then sort of stops working at the 3 or 3-1/2 week mark, each of the last three infusions, proves I need an increase dose or a shorter time frame.

So frustrating my current GI hasn’t been able to make this happen. And I’ve had to go through these struggles each of the past three infusion cycles. Argh.