Interrupted Sleep

Rusty.... You made me lol. Glad you are doing better. I hope it continues.

I swear that everyone on here is related. We all think that way. We want it done yesterday.

Just a thought. Sometimes when the doctor asks how I've been.. I pull up my posts on here. It sometimes tells me how I was feeling and doing--if I forget to write it down on my calendar/food journal.

Anything on the increase of dosage? Personally I wouldn't give up on that. (It's tempting to let things sorta slide cause you are feeling alittle better.)

🤞🤞
Clo

I usually wait 7 to 10 days before I begin a taper. I'd text your GI see what he thinks. Those messages are showing your insurance company that you might need dosage adjustment.

On the waiting on insurance to approve larger dose while waiting to see if shorter duration helps... I have had to wait for 3 infusions. After 3rd infusion--with all the doctor notes indicating you need to go up it should be much easier for you and your doc.

On the plus side glad you are feeling better. Keep up the good work! Did you find splitting the dosage worked better for you?.
Clo

No idea if doing 20 mg at 7:45 am and 7:45 pm every day is better than just one 40 dose in the morning. I’ve searched the web and I see recommendations for both ways.

For me, I found that splitting my pred dose helped me feel better later in the day, but it also kept me from sleeping. When I switched to taking 40 mg in the morning I started seeing improvement at a much more rapid rate overall, but evenings were a little bit difficult UC wise at first. My last run-in with pred was pretty rough, I ended up on 40 mg a day for a month. I think everyone in my house thought someone wasn't going to make it out alive because I experienced such intense steroid rage and insomnia. If you can hold off on the taper to stay at 40 for two weeks, I think that should be good. Hope the pred plus the altered Inflectra dose/schedule makes the difference.

Your GI baffles me. That's not a long taper. Lol. But sounds like a good plan to me.

I always do well tapering to 20 mg, the. I have to slow it down. Fingers crossed this works for you!

Rusty,

That's how I taper - until I get to 10. That's when we put the breaks on and go very very slowly.

Let us know how it goes! Saying a prayer for you.

Clo

Update. So. I’m at the infusion center right now. It’s Thursday April 21. I’m Getting the “new, Cigna approved” 5 mg of Inflectra at the new 6 week mark. In replacement of the 8 week mark.
I took 40 mg of prednisone for 8 days. Today is day 7 of 30 mg of prednisone daily. Tomorrow I’ll drop down to 20 mg a day on the prednisone. I’m doing really well. Only going first thing in the morning. And sometimes one movement late at night before bed. The movement at night, when I’ve had those, they are perfect, soft form tight stools. The morning movement usually is a little looser but still pretty good overall I think. I do notice what seems to be a little bit of mucus in the bowl around the more mushy morning stools. I’m thinking this may be because of a magnesium supplement I am taking right before bed for anxiety and to help me sleep. I’m going to start taking that 200 mg of glycinate magnesium earlier in the evenings and see if that helps.
The morning movement might also be a little bit looser because the prednisone turns me into a nighttime eating wolf man, where I am munching on stuff pretty much non stop for about an hour and a half, straight, right before bed. I’ve really got to stop eating at around 7 pm the latest. But, that, dang prednisone, it’s main side effect for me is the late night constant munchies. I’ve put on five pounds in the past couple of months because of all the late night eating.
I’m a 59 year old man, 6 feet tall, and I was 223 this morning. I really need to get down to 210 or less to feel my best. Sigh.
VERY hard for me to diet while on the prednisone. Argh.

Post Edited (Rusty Barr) : 4/21/2022 7:16:58 AM (GMT-6)

CCinPA said...
Yeh, pred can make you hungry. Glad you are doing well. The drop from 20 on is where to slow down the taper. I always wanted to rush, but after too many times of having to repeat the tapers I learned it's best to just go slow.

Would you recommend 20 mg for 7 days, then a weekly drop of 2-1/2 mg. So. I do 20 mg for 7 days then 17-1/2 mg for 7 days…etc?

I gained nearly 40 lbs over many courses of prednisone and Uceris during a 3 year period. I couldn't even lose the weight while taking Uceris (took it long-term while trying many biologics). I finally am back to a healthy weight for me, but my old clothes still do not fit. I guess I must have permanent weight redistribution from pred and/or getting older, but it sure is a bummer.

poopy--Ahh, that gives me hope--thanks! Lol! I'm at least happy I'm nearly back down to my old normal weight (and I'm definitely a healthy weight for me, so that's good!). I'm still hanging on to my old jeans and workout clothes though, hoping someday they might fit again! And the "fat" clothes are baggy, so I do see quite a bit of difference but just not the same as I used to be. I need to start working out consistently again, too, though. Maybe that's part of it...less muscle than before due to not working out much. Pred really sucks. I wish I had started on Xeljanz a lot sooner.

Oh, and yes, it took me probably 1.5 years to get the weight off. I lost about 2 pounds a month. I wasn't really trying much though, it just slowly came off, so that was nice. Still have the stretch marks for life though. Good times!

I ran into trouble last time when I got down to 2-1/2 mg of prednisone for 4 straight days. Trying to get off it.
That’s when I got very loose. Wound up going all the way back up to 40 mg per my doc to get things back under control.
That 40 mg a day, I started that April 7.
I dropped down to 30 mg on April 15.
I dropped down to 20 mg a day, April 23.

Had my “new” 6 week 5 mg infusion of Inflectra on Thursday April 21.

Still going well.

I have mapped out a taper schedule.
My goal is to be at 5 mg of prednisone the week before and the week after my next 6 week infusion.

So. Today will be my last day at 20 mg of prednisone. April 30.
Tomorrow I’ll start 2 weeks of 15 mg. Starting May 1.
On May 15 I’ll do a drop to two weeks of 10 mg.

This puts me on track to be at 7-1/2 mg the week of 5/29.

Then the week of my next infusion, 5 mg the week of, (next infusion Monday June 6), then 5 mg the week after, week of June 12.

Your thoughts?

Thanks in advance.

-

Post Edited (Rusty Barr) : 4/30/2022 9:26:59 AM (GMT-6)

clo2014 said...
You might be able to hold steady the week before and then drop down a little about 3 days after your infusion. (That's how I did it--and I dropped down very slowly.)

Please let us know how it goes.

Clo

Thanks so much