Interrupted Sleep

Can you please try to measure your trough levels before Thursday. And yes, new GI. This one seems to have questionable competence and lets you suffer too long.

Thanks guys.

I’m going to go back on the 5 mg today of prednisone and try another taper as per your suggestion clo. Thanks so much for the detailed explanation.
5 mg today (the 7th) to Wednesday.
Then 7 days of 2-1/2 mg
Then 3 days of 2 mg

I’m also going to start GI shopping. Obviously not going to tell the current GI.
I’ll keep pestering the current GI. As per your suggestions. But I’m not getting my hopes up. This is why I need to switch. I have an appointment with my family doctor on March 23rd. He’s great. I’m seeing him that day as a follow up on how I am doing on the Eliquis. I’ll get a Referal for a new GI from him that day… if I’m still having issues with the current GI still at that time.

Poopydoop…I asked this current GI about a new blood test last time I saw him face to face (Feb 22) and he said “we are not going to do that”. I explained why I wanted to do it (doing it the day before my next infusion…etc) and he was firm on “no. Not at this time”. So, I backed off. I was not going to start arguing with him in my appointment. In hindsight I guess I could have pushed him harder on the why, but I just didn’t feel it was appropriate. I asked twice and he said “no. Not now”.

If I’m still with the current GI by the end of this month I’ll push him again. I have a follow up appointment with him March 30th.

I’m going to concentrate my pestering for now on getting him to do the peer to peer with Cigna to get the 10 mg dose approval.

This morning, after I got up, I had two movements within a half hour and it was all brown D, and as far as I could tell, no pink or red in it. Or on the toilet paper. Just brown. But, even if the blood last night was just an “event” based on something I did or ate yesterday, I still have not transitioned off the prednisone well from last Thursday. During the 5 mg taper last week my movements were usually more “loose/soft and some watery”, whereas this weekend, I was averaging about 5 times a day and they were way more watery.
I’m guessing a “successful taper” is….I stay as I was before coming off?
Also, is there such a thing as a “one night event of some blood” because of something I ate or did?

Post Edited (Rusty Barr) : 3/7/2022 6:56:08 AM (GMT-7)

Sara14 said...
Yeah, you need a new GI. A reasonable GI listens to you and will do any reasonable labwork you request (and your request was definitely reasonable and what he should've done to begin with).

Yeah. Agree. I like him a lot but he’s turned into a bit of “a pump sunshine guy” of late. I believe he means well….but…

Last time I was there (Tuesday Feb 22) he said he would do the peer to peer for me with Cigna (“I normally do not do those. But. For you. I’ll do it”). Yet it has not been done. I spoke with the insurance lady at the infusion center Friday, and she said she spoke with Cigna that morning, and a peer to peer has not been done or set up.
I realize he is slammed. But I’d rather have him tell me he can’t do it because he’s so busy or whatever, then tell me something and not follow through. That’s very frustrating.
She said, he did have to send a “new order” over to the infusion center for my 5 mg for this Thursday’s infusion, and his office, did send that over. She said “you are still approved for the 5 mg with Cigna so you’re all set for that dose this Thursday”

She also said, if he gets the 10 mg approved by Cigna, AFTER this Thursday’s 5 mg infusion, I can come back in any time and get another 5 mg bump to get the 10 mg dose into my system.

The sad part is, this GI wasn’t always like this. But here in South Carolina, where I live, it’s like everyone is moving here from the north or something. Because the last two or three years the local roads are medium to heavy traffic, night and day, always, and it wasn’t that way prior to that. Only during weekday morning and evening rush hour.
And everyone who lives here agrees with me. So, it’s not just me.

And. His office waiting room, for the past year or so, every time I go, there’s hardly a seat available to wait, the room is packed, and prior, probably two or three years ago, it wasn’t that way. The waiting room was pretty empty. It’s crazy. But he’s just slammed busy. And that’s affecting all his patients I am sure.

That’s one big concern I have. I switch to another GI and he’s just as slammed as the current GI. And my “service” gets worse. But I don’t think I have a choice but to give that a try.

Post Edited (Rusty Barr) : 3/7/2022 7:14:54 AM (GMT-7)

Rusty Barr said...

Last time I was there (Tuesday Feb 22) he said he would do the peer to peer for me with Cigna (“I normally do not do those. But. For you. I’ll do it”). Yet it has not been done. I spoke with the insurance lady at the infusion center Friday, and she said she spoke with Cigna that morning, and a peer to peer has not been done or set up.
I realize he is slammed. But I’d rather have him tell me he can’t do it because he’s so busy or whatever, then tell me something and not follow through. That’s very frustrating.
She said, he did have to send a “new order” over to the infusion center for my 5 mg for this Thursday’s infusion, and his office, did send that over. She said “you are still approved for the 5 mg with Cigna so you’re all set for that dose this Thursday”

She also said, if he gets the 10 mg approved by Cigna, AFTER this Thursday’s 5 mg infusion, I can come back in any time and get another 5 mg bump to get the 10 mg dose into my system.

That’s one big concern I have. I switch to another GI and he’s just as slammed as the current GI. And my “service” gets worse. But I don’t think I have a choice but to give that a try.

He normally doesn't do those?! Doesn't matter how much you like him, he isn't giving you the medical care you need. I liked my last guy, too, but he messed up one too many times, he lied to me, and his staff was full of incompetent ******s, so I said bye-bye. I now work with a University of Chicago IBD specialist and everything is virtual. Something like this could be an option for you in the short-term if you're at all interested. They get you in in a matter of weeks and they are excellent. They see patients from all over the country. You can even keep seeing someone local and just set up a visit with them (or whoever) as a second opinion. You'd have to make sure your insurance covers virtual visits. Just an idea.

Rusty,

Just an FYI, during your tapering... When you are coming close to your infusion time.. stay on your current working steroid dose for another week after the Infusion before you try to lower it.

Keep track of how your feeling. When I am tapering Sometimes I have to go back up and only lower it by a mg or half a mg.. Have your doc call in some 1, 5 and 10 mg pills if possible. Sometimes insurance won't pay for prescriptions until a specific time frame has gone by.. so you'll have to see if one of those prescription cards can help, or wait until your next refill. Talk to the pharmacist, see if he can help and see if they can be filled in different mgs. You may have to talk to your insurance for a work around also..and make the calls first so you don't get price shock.

Also... Sometimes I have had to stay at 5 for a month before I can go down. Then I just go down alittle bit, trying to time the lower dose right after my infusion. Then I try to stay there for another month or so and lower it after my next infusion. Ideally you would like your BMs to be controlled and no blood--plus you need to feel ok too.

Sometimes when you are tapering you can not control-nor do you know-how your body will react. There are times when I have gone 5mg at 0 days before an infusion and others when I have had to increase it 1mg a week after my infusion.

Don't sweat the small stuff. The goal is to get you tapered at the rate your body needs to function.

On the doctor stuff.. I travel alot. My Texas doctor can not or will not prescribe meds to me when I am out of state. So I have to use a doctor in the state I am in that will collaborate with my "main" doctor. It's almost impossible to find a GI that is willing to collaborate. They need to be your doctor for liability purposes. New GIs will require you to indicate they are your primary GI, they will request your records from your other doctors, and they may or may not be able to arrange for your infusions in another state. I tried that and was unable to get infusions. I was forced to go back to my main GI for all infusions. (Thus I return to Texas for my infusions) Thankfully I had let my GI know that because of my travel I was trying to find another GI to work with him and for emergency purposes only while traveling. He stated that if I had not kept him informed he probably would have advised me to see another Texas GI cause he is not playing around with my health or his liability. (His exact words) My work around is to use my Texas GI as my GI. I had to resort to using different PCPs in NM, CO, IL... For continuing care. They can get me the Prednisone and antibiotics but they can not get me my infusions. Liability was the word that came up again and again.

I do agree you need to shop for another doctor. To do that I requested a copy of all my medical records on a CD. (Told GI I needed them for use while traveling) I took the CD in and had the new GI review them and asked how he would handle situations, if he could work virtually, prescribe meds over state lines, if he would be willing to collaborate.

Good luck. Let me know if you have ?.

Clo

Rusty -- I will be surprised if going back to 5mg does anything for you. Every time I have been on pred by the time I get to 5mg I have almost no symptoms -- were you ever there?

Unless your insurance requires referrals, you could shop for another GI yourself and not wait until you see your PCP. When I was looking for a new GI, I made appts and made it clear that they were appts for me to decide whether to switch. I went to those appts with a list of questions -- How many IBD patients did they have? How did they communicate? (I use a lot of patient portal messages when I am flaring rather than trying to make in-person appts. -- it's faster and speed matters when flaring). How open were they to suggestions/questions about treatments, meds & tests? Those were the most important questions for me.

The thing I keep in mind is that while I have one patient to focus on (ME), my doc has hundreds or thousands. I approach it as a partnership where I have the time to research treatments and know what I did in the past and just communicate with the doc when I need him to do something -- like in your case change the dosage and work with insurance and order tests. And I follow-up constantly to make sure I get an answer. We have to be our own advocates.

Good luck!

CCinPA said...
Rusty -- I will be surprised if going back to 5mg does anything for you. Every time I have been on pred by the time I get to 5mg I have almost no symptoms -- were you ever there?

Good luck!

Thanks for your input here. When I was on the 9 days of 20 mg at the beginning of February I was going great. When I dropped down to 10 mg, I was still doing ok, but things were getting soft/loose. But still I would call it a 3 on a 1 to 10 scale (with 1 being remission). I stayed on 10 mg for 14 days. When I then dropped down to 5 mg, I would say I was a 4 on my scale. (Not a 3, 2 or 1, but definitely “livable”). I Did 7 days of 5 mg.

Thursday the 4th of March through Sunday the 6th of March. On no prednisone at all. Just 3 days…things went to a 5 or a 6. Then last night, the third night, I had some blood late at night.

As per clo, I’m going to try 5 mg a day starting today, my infusion is this Thursday the 10th, and I’ll stay on 5 mg until the 17th. I’ll report how things are going. Thanks!

Whenever I found myself back sliding when tapering I would communicate with the doc and usually the advice was to go back to the dosage I was stable at, stay there for a few more days and then try to taper again more slowly (ex: instead of dropping 5 mg I would only drop 2.5 mg). Pred is a drug I always stayed in contact with my doc about. It's a bridge to help you until another med can take over. I hope you can find another GI to help you. UC is for life and you need someone who can work with you.

Thanks so much for your detailed comments!

Update.
After being off prednisone 3 days, based on comments here, went back on 5 mg yesterday and saw immediate improvement.
Not remission. On my 1-10 scale, remission is a 1, 10 is a horrible flare…
Over the 3 days off prednisone after tapering, I would say I was a 5. Had a bit of blood during one of my D movements Sunday night.

Yesterday (Monday) I would say with the 5 mg of prednisone in me. I would say I was a 3 (and no signs of any more blood, best I can tell).

My 8 week, 5 mg infusion of Inflectra is this Thursday morning.
I think I will stay on the 5 mg daily for now. And I’ll contact my GI Friday for his input.

Why am I waiting until Friday to contact him? I don’t want his office doing something to jeopardize my infusion appointment for the 5 mg on Inflectra this Thursday morning.
It happened weeks ago, when he put an order in to Cigna for the 10 mg dose (that got denied), the infusion center got a copy of that request, and they canceled my appointment for the 5 mg for this coming thursday.
In order to get that appointment reinstated, I had to get the GI office to send over a “new order” for the 5 mg infusion for this thursday. I don’t want to do anything at this point to mess with that appointment.

The 5 mg of Inflectra might not be enough for remission. But at least it’s something in my system other than prednisone working against the UC in my body.

Post Edited (Rusty Barr) : 3/8/2022 3:04:11 PM (GMT-7)

clo2014 said...


I have found that when tapering I have better luck when I lower after my infusions and stay there until stable My GI recommends that I lower by 2.5 mg from 10 (which would be 7.5) the week after my infusion. We try that and based upon my body's reaction we then decide to taper more, stay the same or go back up. Usually enough time has gone by that it is right around my next infusion-so I wait and taper after the infusion. There have been times when I have lowered my dosage by 1.25 mg and stayed there for weeks before I lower it again.(cutting the 10mg tablet in 4ths to lower by 2.5 mg and then 8ths to lower by 1.25 mg)

I say this because going back up to 5 mg might not work for you and if it does not make a difference the first 24 to 48 hours you may need to increase your dosage back up to 10-where you were stable--and leave yourself there for awhile and then try coming down 2.5 mg or 1.25 mg per taper try. But these are decisions you really do need to make in conjecture with your doctor.

Clo

Thanks so much.

So. My 8 week 5 mg infusion of Inflectra is tomorrow morning.
I’ve been back on 5 mg of prednisone since Monday. It had an immediate impact upon starting it up.
I have not seen any blood. There’s a pattern with me being on the 5mg of prednisone…it’s been this way of late whenever I have been on the 5mg dose of prednisone…(makes me think a lot of this is in my head)…Im going loose first thing in the morning (very loose/watery/brown D)…then again around 10:30 am (this movement is more soft/loose than what I would call very loose/watery) …Then, I’m not having to go again until around 9 pm (soft/Loose/less watery brown)…then I’m Waking up once or twice in the night to go (more loose/watery brown) …but I am able to go right back to sleep. Obviously, not great…but livable for me. Especially the long break between the typical 10:30 am movement and the next one later at night.

Your recommendation at this point would be to stay on the 5 mg of prednisone each day for a bit and see how I react to the combo of 5 mg of prednisone and the 5 mg of Inflectra (tomorrow) before making any changes to the prednisone dose, correct?
I want to get off all prednisone badly, but I don’t want to “mess things up”.

Post Edited (Rusty Barr) : 3/9/2022 6:04:18 AM (GMT-7)

Rusty,

If it were me I would stay on the 5 mg and see how I did. I'd also aggressively pursue a shortening in the time frame for infusions UNTIL the increased dosage was improved. (Usually my insurance BCBS approved shorter durations much quicker than increased dosages.) If things go well a week after the infusion I would cut my dosage by 1.25 mg or 1 mg or even .5 mg.(Depending on the dosing tablets you have and how you are doing.)

While tapering and struggling with going down I found it beneficial to have 1 mg, 2.5 mg, 5 mg and 10mg tablets. To do that I had to work with my doctor and the pharmacist.

Good luck on your infusion.

Clo

Hope this is a turning point so you can get off the pred...slow taper.

q