Increasing Inflectra dose

Hi.

So. I’m starting a new thread. I’m so thankful for all of you at this forum. I really don’t know where I’d be without all the great thoughts and comments.

So. Here’s my initial question here in this new thread.

I’ve been on Inflectra. After induction, I was getting 5 mg every 8 weeks. Then old doc got that moved up to 5 mg every 6 weeks.

My experience with this drug so far, is that it seems to work “ok” for 3 weeks, (2 or 3 BMs a day, little or no urgency), then in week 4 things on, until the next infusion, things start to go downhill (4 to 6 BMs a day, looser, and some scary moments of sprints to the bathroom, also some “driving, can’t find a rest stop, poop my pants). Always a lot of fun.

The change from 5 mg every 8 weeks to 5 mg every 6 weeks did nothing. Old doc tried to get 10 mg every 6 weeks approved with Cigna. He continually either did nothing or stuck out. So frustrated with him and his lies to me (yes, he actually lied to me several times about calling Cigna). FINALLY, I switched GIs.

New doc got 10 mg every 6 week approved July 12, 2022.

New doc also put me on budesonide after my third week since the last 5 mg infusion, this last time. That drug has helped a lot. He said do 9 mg for 14 days then drop down to 6 mg for 14 days. When I dropped down to the 6 mg a day, things started to get worse. I went back up to the 9 mg dose every morning, and things got “stable” again.
I’m currently going 2 or 3 times a morning, loose, mushy….some watery. No urgency moments. Of course, I can live with it like this.

Monday the 18th of July I start the 10 mg every 6 weeks.

Did any of you make this “increase” move and how did that go?
(The jump from 5 mg every 6 weeks to 10 mg every 6 weeks)

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Post Edited (Rusty Barr) : 7/13/2022 11:07:20 AM (GMT-7)

Great news Rusty! Keep us updated how you do on increased dose. Don’t worry about the budenoside until you see improvements/feel stable. Getting off the prednisone is the most important thing.

So glad that you finally approved for the changes. When I was on Remicade at 5kg every 6 weeks it helped, but over time we went to every 4 weeks. I eventually ended up on 10kg every 4 weeks. I have crohns & had an emergency resection out of the country. After returning home 4 gi's said you no longer have crohns, you had surgery. Gi number 5 did a scope, I was extremely sick by the time I got to him & he put me on Remicade immediately.

Good luck.

Thanks all!



It’s interesting (sort of), that Wednesday was my last day of prednisone. The 5 mg of the taper…so, no more prednisone….
I’ve been on that…predominately low doses…various weeks between 20 mg and 5 mg…since late January 2022 I think…and..

So…now…I’m at the end of week 5 of the last infusion of 5 mg…and…
I’ve been taking the 9 mg of budesonide every day. I have my 10 mg 6 week Inflectra infusion Monday the 18th.

I guess even that little bit of prednisone was still helping me. The past two days things are not crazy, but I’m definitely looser….frequency increase. Going now 3 or 4 times a day. Mostly throughout the morning hours. Late afternoons and evenings have been fine.

I was hoping the 9 mg of budesonide was all I needed at the tail end of my Inflectra dose…end of week 5…I guess not.




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Post Edited (Rusty Barr) : 7/15/2022 10:58:22 AM (GMT-7)

It usually takes a week until I'm off prednisone to start showing symptoms again, so the 5 mg may not have even been doing much of anything, but it had been enough time off of 10 mg for symptoms to show up again. Flowers could also be correct.

Rusty,

Sometimes it takes a week or so before I start to "firm up" and for frequency to decrease. That lasts about 3 or 4 weeks--unless I am flaring. If flaring it's all over the place. And I have to take dual therapy (methotrexate) to get to where I need to be.

Did your new GI shorten the time frame also?.

Please make sure you tell your new GI so he can start working on the timing if it wasn't shortened... You may have to go to every 4 weeks. I think he needs to check you for antibodies also. If you have antibodies it will impact you. I know that when I have gotten off methotrexate and then developed antibodies the Remicade did not work as well.

On the timing....My GI likes to try one more infusion (after I complain) and then waits a few more weeks. Then they start frantically working on the dosage/timing change so we can get it approved before the next round.) It makes me frustrated if we miss it...

Please let us know how it goes.
Clo

straydog said...


Also, I think we've asked before have you tried to take anything to help bulk up your stools?

Hi. Thanks. Yes. Before I had IBD I had IBS for years. And a heaping teaspoon of Konsyl every day did wonders for me. I still take it daily, late mornings, but since UC, it doesn’t have the same “power”

It might not be a bad idea to request another test of your blood levels of inflectra. Hopefully your current doctor is competent enough to know that needs doing just before your next infusion.
You still have the option to increase to every 4 weeks before abandoning ship but it only makes sense to do this if you don't have antibodies to inflectra and if it is already helping you to a degree.
Personally I wouldn't jump back on budesonide because I like to "feel" what the main drug is doing before changing too many things, but that's just me.
Humira and inflectra are both tnf-inhibitors so from the same family. There is some evidence that inflectra is more effective than humira for UC.
Entyvio is also a biologic but works by a different mechanism (and again there are studies showing it's more effective than humira in treating UC)

It's only been 5 days since your infusion so see how you are doing in another week or so. One thing that I found that as I was healing it wasn't a linear day to day improvement. But when I started look at things on a week to week basis I could better see that I was slowly improving. I would hold off on the budenoside unless things start to deteriorate. Going 4-5 times a day with unformed stools isn't ideal but you said you have seen some improvements so have some patience, grasshopper (wasn't that a movie line?). I think it's probably too soon to move to another med. You have only had 1 infusion at the higher dose. If you deteriorate then that's different. See what your doc says when you see him.

I agree with poopydoop about getting your levels checked. I don't think you ever had that test done properly, have you? It has to be done a day or so right before your infusion. If you have high antibodies then no point in continuing with inflectra.

Entyvio is not like humira at all. Totally different class of med and it was specifically developed to target the colon. It works much more slowly than other meds so if you do decide to try that, be prepared to give it 3-4 months to see if it starts to work and it can be even longer than that for full remission. It works faster for some than others, but after 4 months if you don't see any improvement then I doubt that it will work for you.

totally understandable. I always think this this disease was my lesson in learning to be patient -- so hard. I likely drove my docs nuts with all my questions lol

I got the first 10 mg dose of Inflectra on 7/18. It’s now the evening of the 26th. I just don’t feel like it’s working that great. I’m still going 4 or 5 times a day. Usually, 2 or 3 times throughout the morning, them another in the afternoon, then another in the early evening. All brown mush, mixed with loose/watery. Sometimes it’s very soft stools mixed in, but that’s rare.

I am going on a 3 day business trip starting tomorrow morning. I feel like I need to go back on the 9 mg of budesonide for those 3 days.

Thoughts?

Hey Rusty,

You sound as though you are improving but your patience is giving you a hard time. I know the feeling.

Call your doc on the extra med. (There were times when I had to go back on meds if I was traveling--so I tried to travel a lot in one month and then stay in office for two or three months. Don't know if that's possible with your schedule though)

Get your doc to order the test for your trough/antibody levels. The test should be done in the days leading up to your infusion--although my nurse draws mine right before my infusion after they've accessed a vein-and then I get my results before my next infusion and they have time to change timeframe or dosage w/insurance.

Bulk up your stools using a fiber. I take a fiber supplement 2 times daily when I need to. (When traveling I also used antidiarrheal meds to slow things down...)

Remember that sometimes it takes 3 or 4 infusions to build up your trough levels so that the medicine is working at its best or starting to work better. Personally I would not be thinking about changing meds right now. If your body wasn't receiving enough inflectra in the time period it needed--then there's probably extra healing that needs to occur. It may take some time for that to take place - so you might have a period of loose stools.

I know you want fast healing and results.... I was so lucky I had immediate relief and super fast healing..... So fast that scar tissue developed and I had 3 obstructions and 3 surgeries ending up with a Colostomy.... So please try to be patient. Patience gave me as much trouble as the disease....

Finally... Before I moved on to another drug (high antibody levels) we started dual therapy. It helped lower the antibodies I had developed, helped me stay on Remicade, and pushed me into remission. So that may be something you discuss with your doctor waaaay down the road. I know that some people prefer not to do dual therapy... I just wanted to ensure I had tried everything before I moved on. I was scared I'd run out of options - that the other drugs would not work and that I had blown my chance on Remicade. (Plus insurance didn't cover alot if other drugs) But that's a choice you and your doctor will have to make.

Safe travels my friend. If your on a trip already...you can buy otc antidiarrheal for a couple bucks to get by and toss it before you fly... Saying a prayer and crossing my fingers that you continue to improve.

Clo

P. S. I'd try to move the dosage to every 4 weeks before I changed my med. We've done that... I started to improve and we then moved it back out. Hang in there!

And on the antidiarrheal... I'd use a half dose at first. You wanna be careful... Lol...

Post Edited (clo2014) : 7/27/2022 9:21:21 AM (GMT-7)

I think that's a good plan. There's a pattern here of your symptoms getting worse shortly after you stop steroids. I do hope the inflected eventually can get you off steroids but don't waste another year on it if it doesn't. Definitely get that bloodwork before the next infusion.