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Increasing Inflectra dose

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Posted 11/7/2022 12:32 PM (GMT -8)
I'm just going to throw in that constipation can be a symptom of UC healing...regression of inflammation. So keep that in mind.

q
Posted 11/7/2022 1:41 PM (GMT -8)

quincy said...
I'm just going to throw in that constipation can be a symptom of UC healing...regression of inflammation. So keep that in mind.

q

Thanks

So. Is this “UC constipation”? Urge to go. Mild pushing. Nothing.

Other times. Urge to go. Mild pushing. Feels like a little comes out. Then it feels like I am done. Look down in the bowl and see just a very small pile of mush. Or very small pile of small stools. Get up. Wipe. Urge gone.

I don’t know if I have ever been constipated since UC in 2016. Constipated before UC meant, pushing hard and nothing.

?

Post Edited (Rusty Barr) : 11/7/2022 8:03:09 PM (GMT-8)

Posted 11/8/2022 1:45 AM (GMT -8)
I had to read more of this thread to realise what meds you're on. I was commenting on the budesonide comment about constipation.

With a UC type of constipation that I've experienced, it was what I would say before obvious symptoms of a new flare that progressed with definite rectal spasming and eventual increasing and urgent bms. In regression of a flare with limited and mild inflammation, the spasming was minimal as was output going from skinny stool to harder pieces difficult to expel. I most definitely had increased gas and it was also difficult to expel...more like it tended to disappear in the rectum rather than come out.

With your situation, it's well possible that the welchol has lowered bile acid excretion and the volume of bms. If you do have IBS, your colon and rectum is just used to emptying at a specific rate. If you have any rectal inflammation, it will push out anything that's in the vicinity asap...which seems to be not as much as it's used to .

If you don't have rectal inflammation or you have very little (healed/healing from the meds), hopefully you'll see improvement with more formed stool, as the colon is able to absorb fluid.

The point is...you don't know what's exactly going on to pinpoint what's working for what, because you've not had visual inspection for a while.
But it seems youre going in the right direction.
It would be good if your doc could at least do an in office rectal scope before the colonoscopy in January...but not many do them nowadays it seems.

q
Posted 11/8/2022 4:03 PM (GMT -8)
It’s late Tuesday afternoon 11/8. So frustrating. Posting here. It’s a place to vent a bit. Today was a “step back day”. Typing it out makes me feel a little better.

Sigh.

It was the 4th straight day of my step down from the 9 mg of budesonide to the 6 mg dose. I was really seeing some progress being on the welchol. And the bump up to 2 tablets at breakfast and 2 tablets at lunch…I was hoping inflammation was going down and or my problems of the past …however many months…were proving out to be more “gallbladder IBS-D”…and not so much UC inflammation …and now that I was on the welchol and seeing progress…continual improvement was ahead….sunny days coming.

Not so fast.

Today, on the road making sales calls, driving, I had 3 moments of urgency. Where I had to get to a bathroom asap. Or else.

Not good. I’m blaming this on the budesonide drop down.
I don’t know what else it could be. Everything else the past however many days was the same.
A real bummer for me.

I know yo-yo-ing on a medication is not good. But I feel like I have no choice. I’m going to bump myself back up to the 9 mg. I will update. It will be interesting to see what happens the next few days after the bump back up.

Sigh.

I’m discouraged.

Oh, what a fun ride this UC has been. (Sarcasm).

I have to keep reminding myself of so many people I know who are in much worse shape than me with their health issues. Or else I seriously might cry. It’s really incredible how depressing this UC can be.

Sara14, here on this forum, thought it was inflammation all along. I was keeping my fingers crossed that it wasn’t. That it was IBS-D. Oh well.

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Post Edited (Rusty Barr) : 11/8/2022 4:34:16 PM (GMT-8)

Posted 11/8/2022 4:08 PM (GMT -8)
I'm not an MD but you really sound like you're flaring. Have you explained about having urgency and night time bathroom trips to your GI? And that it gets worse if you try to lower the budesonide? It might be that he doesn't realise how badly you are suffering.
Posted 11/8/2022 4:43 PM (GMT -8)
I agree with poopydoop -- contact your doc and let him know what is going on and be completely honest. Don't feel like you have to be positive -- just be as honest as you are here. It's likely only going to get worse with stretching your infusions out to 8 weeks. You probably should stay on the budesonide until you are fully back to normal for at least a few weeks -- that's what I and others have done and we were on it for several months at a time. Since you just got approval for 8 week infusions not sure what insurance would say about another change to 4 weeks but that might be worth a try before giving up on Inflectra, although in all honesty I have my doubts that it's going to work for you. Might be time to move on to another med. You have been flaring for a very long time.
Posted 11/9/2022 6:50 AM (GMT -8)
Rusty,

I know this is disheartening and frustrating. I am sorry you are still struggling.

I'd go back up on the budnisone and contact my GI. Your flare is not under control and it's been a long time. You need a scope. You eventually may have to try a different med..... So start preparing your mind set and finances for that by researching.... Just in case.

Personally I'd tell my GI to max out the Inflectra to 10 kg every 4 weeks... starting immediately AND I'd get that sent to insurance immediately. Forget the 8 weeks. It isn't working for you. Your flare has been going on too long and you have been using additional meds to just try to control your symptoms. You need to maxout on the Inflectra and get your flare under control. Waiting around can cause additional scaring and thickening of your intestines. Your going to have to be your own advocate and push for this.

Then you stay at that dosage and timeframe...or if that doesn't do it you switch meds. Regardless he has got to get you outta this flare.

Are you seeing white mucus in your stools? Blood? Does it smell different? Is the form changing any at all...does it look like it's getting narrow and looking like ribbons?

This disease is just so different flare to flare, and different for each individual. It's hard to know what to do....

Hang in there,
Clo
Posted 11/9/2022 8:12 PM (GMT -8)
Sorry to hear, Rusty. I still hope I'm wrong. Keep moving forward. You'll achieve remission at some point...hopefully sooner rather than later.
Posted 11/10/2022 7:17 AM (GMT -8)

Sara14 said...
Sorry to hear, Rusty. I still hope I'm wrong. Keep moving forward. You'll achieve remission at some point...hopefully sooner rather than later.

Thanks. Bumping back up to 9 mg on the budesonide from (a 4 day trial of 6 mg) has helped for sure. Immediate impact. That says a lot. I’m pretty sure what’s going to happen is, I’m going to have my colonoscopy. And new GI is going to say “inflammation isn’t that bad, or is minor, the Inflectra is in your blood stream is as needed for most, and it’s just not working for you. It’s been a year on it at various doses. That’s not the problem here. Let’s switch to another drug. How about Rinvoq?”

The Rinvoq will kick in, I’ll come off the budesonide and stay on the welchol (which can be a long term drug). This is what I believe is coming.

New GI told me most of these biologics only have a 40% to 50% success rate. And often it’s difficult to find the one that will work well for your system.

So, for me.
1. Humira worked great for 4 years. Then. Built up anti bodies. Not an option any longer.
2. Old GI put me on Xeljanz. I did well on it for several months then started to slip. Went to see old GI. In hindsight old GI should have told me to stay on it. He didn’t. He pulled me off. I believe now I should have stayed on it longer before he pulled me off it. Oh well. Spilt milk now.
3. Inflectra. Various does. Worked well for three months I think. Been on it now a little over a year. Since then it’s been up and down. Good days. Bad days. Good month. Bad month. At worse it hasn’t been awful. But an average of 7 times in a 24 hour period in the bad days is not acceptable.
4. New GI. Rinvoq?

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Earliest new GI can do colonoscopy is early January. The guy is slammed busy. I can hold the ship until then with 9 mg of budesonide, 2 tablets of welchol twice a day, 2 Konsyl doses a day. Watch what I eat.

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Post Edited (Rusty Barr) : 11/10/2022 7:27:54 AM (GMT-8)

Posted 11/10/2022 9:18 AM (GMT -8)
I agree with your predictions/assessment. And he's right about the success rate of these drugs. It's frustrating. Keep us posted. I'm glad the budesonide is helping.
Posted 11/10/2022 10:05 PM (GMT -8)
Darn Rusty,

I'm sorry it's been such a struggle...

I think you have a game plan..... Remember to check the 2023 formulary list on your insurance. (I checked ours and they removed a bunch of stuff, plus They moved some to a "special tier" and we have to pay a larger portion for it. 😩)

I'm glad that switching things around helped with the symptoms... But gosh having to deal with all this is just a struggle.

Hang in there!
Clo
Posted 11/11/2022 8:37 AM (GMT -8)
I’m amazed at the huge difference for me (where I am at right now) between 6 mg of budesonide and 9 mg of budesonide. (With The the 14 to 20 (I am guessing) of trough of Inflectra in me and the 4 tablets a day of welchol).

On 6 mg I go 3 or 4 more times a day …and often with “running to the toilet” urgency. 8 or 9 times in a 24 hour period.

On 9 mg a day the past several days I’m averaging 5 times in a 24 hour period, only 1 of those in the middle of the night…and the “running to the bathroom” urgency is gone. I still get some urgency at times, but I can hold it and make it to the toilet “reasonably”. I also get the feeling off and on throughout the day….Maybe every couple of hours, like, maybe, I need to go. I ignore these “maybes” and the feeling goes away. I’m hoping the longer I’m on the 9mg of budesonide and the 4 tablets of welchol, this “maybe” feeling thing will go away. Maybe that part of it is in my mind. Sigh.

I’m thinking the early January 2023 colonoscopy will give the new GI the data he feels he needs to switch me to a new biologic. Justifying the switch to the Insurance company. I’m sure he also wants to go in and see exactly what my inflammation looks like and anything else going on. The colonoscopy of March 2021 was done by old GI who was tied to a different hospital. New GI specifically said, last appointment, he’s confident he’s not going to see cancer. That gives me some peace of mind until I get to the procedure. I’m by nature, a worry wort.

I have read worry worts are more prone to get bowel disease.

No question I feel, I need a new biologic. I can stay on the welchol forever, but I can’t on the budesonide, and it’s obvious there’s enough Inflectra in my system, and no antibodies, and it ain’t doing it. So to me, this yells, “it’s time for a new maintenance drug”

Humira worked great for me for four years. 2016 to 2020. I should’ve never come off it for six months even though I was in full remission. So dumb. Then I go back on it, antibodies. Dah.

I’ve been struggling pretty much off and on non stop since. And that was the spring of 2021. It could be a lot worse no doubt, but it sure is depressing.



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Post Edited (Rusty Barr) : 11/11/2022 12:48:01 PM (GMT-8)

Posted 11/11/2022 9:59 AM (GMT -8)

Rusty Barr said...

I have read worry worts are more prone to get bowel disease.

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Only in the realms of pseudoscience. That idea was debunked decades ago.

Have a read of this for more background
https://www.statnews.com/2018/06/12/lobotomy-ulcerative-colitis-shameful-medical-history/
Posted 11/11/2022 12:07 PM (GMT -8)
It's hard to not be anxious with this disease.
Posted 11/11/2022 12:54 PM (GMT -8)
Sara...true...and what sucks is other autoimmune diseases that just like to join the fun.

q
Posted 11/11/2022 11:57 PM (GMT -8)
Rusty,

I too think it's past time for new meds. Anything to get you past this bump. The only reason I said to raise it was so that maybe... While you were waiting for new med approval.... You'd get some relief.

I really am glad the new pills are helping. I'd just contact your GI and let him know you can't go below xyz.... that you will not be tapering....and its time to start thinking about a new med.

I'm.crossing my fingers for you and praying that it just keeps improving while working with this new GI.

Clo
Posted 11/13/2022 7:07 AM (GMT -8)
Based on reading through a bunch of fantastic posts on this forum. I’m thinking I ask for Stelara next. Humira worked. Inflectra (remicade) didn’t. Thoughts?
Posted 11/13/2022 9:35 AM (GMT -8)
I think that would be a reasonable next try. It's more convenient than an infusion.
Posted 11/13/2022 9:01 PM (GMT -8)
Rusty,

When we were playing around with my Remicade infusions because of the recurrent UTIs... Stelera was what my GI recommended for the next medication. He said he has a lot of success with it. When I looked it up on my insurance it was going to cost a fortune....so I was very Thankful my Remicade started working again and I am still able to use it. But my doctor--who never "raves" about anything--really really really likes Stelera. Lol...

So just check out your insurance thoroughly.

Clo
Posted 11/13/2022 9:05 PM (GMT -8)
It was only $5 for me with their copay assistance program.
Posted 11/17/2022 1:00 AM (GMT -8)
Sara,

You lucky duck! What was their assistance amount? Is it based on assets or income? I'll. Look at it again.... But my script insurance had a 30 percent deductable..... So it was very high for me. I'll check it again. I hate all this research..

Clo
Posted 11/20/2022 1:18 PM (GMT -8)
I’ve been drinking two Fairlife protein shakes every day of late. The one on the morning has 33 grams of protein. The one in the afternoon has 42. I’ve read on here it’s a good idea to make sure you’re getting enough protein every day with UC. I’ve noticed my early evening movement most days is a darker brown than the movements I have at other times in the day…those are more medium brown. Is this darker movement being caused by supplements or the protein? I have read that as long as it’s not black or tarry it’s ok, but still, being the worry wort I am…is this any reason for concern?
Posted 11/20/2022 2:27 PM (GMT -8)
Sounds like it's the protein drink or it could be a combo of supplements & the drink. The way I'm reading your post this started after adding the drink.
Posted 11/20/2022 2:47 PM (GMT -8)

straydog said...
Sounds like it's the protein drink or it could be a combo of supplements & the drink. The way I'm reading your post this started after adding the drink.

Thanks for posting. Yeah. Pretty sure it did. Also. I got to thinking…(to myself)…”hey dummy. Stop the drinks for a few days and see what happens!”

Dah.
Posted 11/21/2022 7:20 PM (GMT -8)

clo2014 said...
Sara,

You lucky duck! What was their assistance amount? Is it based on assets or income? I'll. Look at it again.... But my script insurance had a 30 percent deductable..... So it was very high for me. I'll check it again. I hate all this research..

Clo

No, none of the copay assistance programs are based on income or assets. All you need is insurance and you call them and get set up. It was that way for Humira, Stelara, Entyvio and my Xeljanz is completely FREE. It's not a certain amount. The cards just give you a copay of $5, or $0 for Xeljanz. I literally pay nothing and neither does my boyfriend for our Xeljanz!
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