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Increasing Inflectra dose

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Posted 12/27/2022 11:41 AM (GMT -8)
D. -- have you seen any improvements at all with the 3 doses? If not, Inflectra may not work for you at all. If you have seen improvement -- just not as much as you had hoped -- maybe give it a little more time. The 3rd dose was the end of the loading doses. Have you ever tried hydrocortisone enemas? They worked for me much better than the mesalamine enemas and were easier to retain.
Posted 12/27/2022 12:22 PM (GMT -8)
I have an appt with the dr today in about an hour. I would have never thought inflectra not working for me. But it surely looks that way. I’m having D for many days now. And that last part of the colon has gotten zero improvement, still loads of mucus and blood and urgency and now bad cramping.
I have started the hydrocortizone enemas. I’m gonna do the second one now. I too retain them better. But i feel they are short lived. After 1/2 a day i tend to go back to square one. So i have tried and failed smile to combine them with mesalamine enemas. Best thing to do is mesalamine at night and hydrocortisone in AM. But i have not been consistent with that combination. Man I’m not in good shape and this sucks
Posted 12/28/2022 11:15 AM (GMT -8)
What did your doc say?
Posted 12/28/2022 12:48 PM (GMT -8)
We both sort of agreed that I am flunking inflectra but we don’t want to give up yet. In four weeks I will get the 10 mg/kg and see how I do on that. If I don’t get any improvement in a few days, he suggested to start prednisone to get things under control.
Posted 12/28/2022 12:50 PM (GMT -8)
Today in the morning, my bowel movement didn’t look terrible, better than anything I’ve seen in the past week. However, after the main bowel movement, I go every other hour or every hour to get out mucus and blood and specks of poop due to urgency
Posted 1/6/2023 10:29 AM (GMT -8)
I had my colonoscopy early this morning. Jan 6th.

Highly recommend having this done early in the day if you have to have one. They said hey had 90 patients today for 5 doctors. That’s just crazy.

Also I had to go with the Gavilyte prep. Pretty rough. Made me nauseous. But I didn’t puke.
My GI said this is the only one he wants his patients using.
If you wind up going this route, start it around 3 pm the day before your procedure, and start the second of the split doses at 8 pm. That’s what I’ll do next time, if there is a next time with this stuff.

I was surprised how quickly I was alert after waking up after the procedure.

This was his first time his doing a colonoscopy on me. The last time I had one was with the old GI, March of 2021.

He came in after and told me some people have severe UC, some people have mild UC, and he said, he would say mine is “Moderate UC”. I didn’t have any inflammation in my rectum and that’s why I haven’t been having issues with urgency. But he said the rest of me has inflammation. So, “the infectra and the budesonide is not working and we have to switch to a new drug plan”. He said he also wants me to go down to the bigger hospital in Charleston SC (we live about 2 hours from there) this summer and see someone who just specializes in UC. He said he deals with not just IBD, but also all other issues that people have like liver, pancreas, gallbladder, etc. He thinks it would be good for me to see someone who’s more specialized in exactly what I have, and only UC. I’m ok with that of course. He said it would be summer before he could get me in there, that’s how busy they are.

I already have an appointment with him again on Monday Jan 9. He said he is open to trying Stelara next. He said we will talk about it Monday.

The post report certainly could have been a lot worse. I’m thankful.
Posted 1/6/2023 3:30 PM (GMT -8)
You aren't on rectal meds are you? Odd that you didn't have rectal inflammation, but the rest of the colon did. UC starts in the rectum and works up through the rest of the colon. Did he take biopsies? It's possible that you could have Crohn's colitis instead of UC.

Get copies of your reports and let us know what they say. There are several people here who are good at interpreting results. (I'm not one of them lol)

Good that you will be seeing an IBD specialist. You have lots of time to compile a list of questions for him ... don't be afraid to ask lots of them about diagnosis, treatments, alternatives, etc ... really ask him everything smile
Posted 1/7/2023 7:28 AM (GMT -8)

CCinPA said...
You aren't on rectal meds are you? Odd that you didn't have rectal inflammation, but the rest of the colon did. UC starts in the rectum and works up through the rest of the colon. Did he take biopsies? It's possible that you could have Crohn's colitis instead of UC.

Get copies of your reports and let us know what they say. There are several people here who are good at interpreting results. (I'm not one of them lol)

Good that you will be seeing an IBD specialist. You have lots of time to compile a list of questions for him ... don't be afraid to ask lots of them about diagnosis, treatments, alternatives, etc ... really ask him everything smile

Interesting that you say I might have Crohns and not UC. When I had my fistula issue (October 2021) the surgeon told me after the surgery that what he saw tells him that I have Crohns and not UC. Now I don’t know the details of that statement because when I pressed him about that statement at a follow up visit he said it’s really nothing to be concerned about because “they are treated the same”.

As I mentioned I’m going to ask to switch from Inflectra to Stelara Monday. I already mentioned this to my GI in the after colonoscopy talk. And it sounded like he was good with that, but he added, let’s talk about it Monday when you come in. Hmmm. I think I remember reading Stelara is really a Crohns drug that has been approved for UC. So, maybe Stelara would work great for me?

In 2016 I started Humira and that worked great for me for 4 years, until I built up antibodies blocking it by taking an I’ll advised “vacation” from all drugs for about 8 months. Which I blame on my old GI. I was in total remission during that time, but he should have warned me about the possibility of antibodies if I stayed off Humira that long and he didn’t say a peep about that. When I started to flare after the vacation and then the blood work showed the high antibodies he said “oh yeah, that’s a sure risk when you stay off Humira for a long period”. I really liked that old GI but I wanted to lash out at him when he said that. Anyway, I wound up switching GIs so it’s old news.

Anyway, There’s a guy at my Church that uses Humira and he says it works great for his Crohns. Now I’m thinking maybe that is why Humira worked so great for me all those years???

So…my question…is there really something important about knowing which I have…Crohns or UC?? Or is that surgeon right?

He did take biopsies yesterday. Does that tell if you have one or the other when he gets those results?

Post Edited (Rusty Barr) : 1/7/2023 7:48:23 AM (GMT-8)

Posted 1/7/2023 8:25 PM (GMT -8)
Rusty,

I started out as a UC patient, once I developed a fistula the 2 first GIs I was seeing switched me from UC to Crohn's automatically because usually UC does not have fistula occurrence except in a small subset of patients--and over 50 percent of those fistula patients have both UC and Crohn's. My current team of doctors said that the subset of a duel diagnosis is much much smaller, that most people are misdiagnosed with UC to start with and usually that patient always had Crohns, but they did agree with the fistula statement. 🥴

This is what I remember my current Colorectal surgeon telling me from the very onset....

Even though some of his patients test results may indicate they may have UC--which travels in a continuous pattern, unlike Crohn's which can be patchy and leave segments of unaffected intestine--he initially treats his patients as though they have Crohn's until he has definitive proof and a health history pattern that indicates which disease they have. The reason he does this is because he has had many patients switch over to him after a GI and Colorectal surgeon decided it was UC, removed the large intestine, made a jpouch, and then the patient developed symptoms again and ultimately ended up with short bowel syndrome... With Crohns disease the majority of CRS only remove intestine if they have to and they usually resection it....because they know that since Crohn's is "patchy" they may have to go back in and remove even more. With UC..usually.... if you remove the large intestine you do not have a recurrence of disease symptoms.

The treatments are usually very similar and the medications are able to be used on both diseases--although your response to specific medications depends upon your own body's/disease response.Doctor's and insurances usually prefer to try specific medications for Crohn's first though.

(Please correct me if I am wrong here people)

And finally.. he told me that GIs may do scopes, biopsies, balloon dilation, but if they ever want to operate on you put them off and find a good colorectal surgeon for a second opinion.

There are tests to differentiate between UC and Crohns--but if you are one of the few with both and your doctor misses that or your tests are not completely conclusive--assume it's Crohn's when it comes to surgery. You do not want short bowel syndrome. There's a lady in one of my support groups and she is really having issues. It scares even me.

Clo

Trust but verify.

P. S. My GI sorta does the Crohn's thing too--in that he does not recommend j pouch unless he is very very sure they have UC and their health care pattern fits in with its perimeters and does not cross into the dreaded Crohn's category.

Post Edited (clo2014) : 1/7/2023 8:31:30 PM (GMT-8)

Posted 1/8/2023 6:51 AM (GMT -8)
RB, wait until your dr gets the biopsy report back to see what it shows. Whatever is in the report is what the drs go with for a determination. Once in a while a biopsy will come back in the grey area. There's the pill cam test that can be done to look at the small bowel.

We've had members here on Humira that did fine so I wouldn't give that a thought. Think about the drugs used to treat crohns that later got approved for UC.

When you get scopes done you should always get a copy of the reports including the biopsy reports so there is no confusion later.

Take care.
Posted 1/8/2023 2:45 PM (GMT -8)
There is a type of ulcerative colitis which spares the rectum but it's uncommon. So I wouldn't immediately assume you have crohns disease. The biopsies will hopefully give more insight.

I think it's great if you can go to see the IBD specialist, even if it takes a while.
Posted 1/8/2023 6:46 PM (GMT -8)
Rusty,

I wanted to clarify....

I was not trying to state that you have Crohn's. I was attempting to differentiate a little between the two and explain why your one doctor may have said something about "Crohn's" to you. For some doctors the fistula thing just automatically throws you into the Crohn's category.

Test results will give you a clearer picture. The majority of people have pretty clear results. The biopsy and the blood tests...let us know how they turn out.

My first biopsy showed UC... But there was that fistula. That GI had me do 3 scopes in one year trying to make sure it wasnt Crohn's because of that fistula. The second and third year scope were confusing with different biopsies showing different disease..The rectum and anus showed UC and higher up was Crohns. I still wonder if they mixed up my samples... I've had mixed results ever since. 🤔

I agree with Straydog... Wait for the results..

I also think it's important to go to a specialist even if it takes alittle while....

Please let us know how it goes.

Clo
Posted 1/9/2023 6:14 AM (GMT -8)
Thanks everyone.

Question. What are the main treatment differences between UC and Crohn’s?
Posted 1/9/2023 10:30 AM (GMT -8)
No, UC doesn't always affect the rectum if we are on meds. This is what happened to me my last 2 colonoscopies (rectum was spared but I had inflammation higher up) and my former horrible surgeon who knew nothing scared me about Crohn's. I checked with my IBD specialist at University of Chicago and he said UC does not always heal in a linear fashion. The meds could be helping the rectum and not other parts. Your biopsy should determine UC.

That being said, Stelara seems to work better for Crohn's.

Thank god you finally get to move on to a different medication. I cannot believe how long this took.
Posted 1/9/2023 12:03 PM (GMT -8)
Thanks

Post Edited (Rusty Barr) : 1/9/2023 12:08:41 PM (GMT-8)

Posted 1/9/2023 4:04 PM (GMT -8)

Rusty Barr said...
Question. What are the main treatment differences between UC and Crohn’s?

There's not a lot of differences with meds. Most get approved first for Crohn's and then about a year or so later get approved for UC. Entyvio is an exception as that was first created for UC. I think one of the new ones is like that too -- approved first for UC, but I don't remember which one. The biggest difference is if you would ever need surgery. A J-pouch is not recommended for Crohn's so they usually just get resections, or if the entire colon is removed then they have a permanent ostomy.
Posted 1/9/2023 8:15 PM (GMT -8)
Rusty,

As far as the meds go... According to my current doctor's, with Crohn's they try to start you on biologics asap. They also try dual therapy more often because they want those biologics to last as long as possible--because with Crohn's there is no surgical cure--unsure if that's with ALL biologics.

Cc is correct in that they do resections and avoid J Pouches on Crohn's patients. There was a report that indicated Crohn's patients had a more difficult time with fistula healing..... and my doctor's have stressed to me that fistula surgery does fail more often in Crohn's patients.

After surgery--Crohn's is still there. It can just move to another place and can cause additional issues there. He said they recommend Crohn's patients stay on biologics and not get off them. UC patients can have surgery and not have to take meds again. (I'm sorta jealous of UC patients....)

I'm so glad you have this new doctor. He sounds like he's willing to go the extra mile for you.

Clo
Posted 1/10/2023 4:57 AM (GMT -8)
Great information. Thanks.
So, Stelara. He’s got his office working on getting me approval with insurance now. I’m scheduled to get a 10 mg 8 week infusion of Inflectra on January 23. He said not to cancel that appointment. Stelara might take a little while to get approved and it might not be approved by the 23rd.

I spoke with his nurse who does the insurance call for approval. She said Stelara is one of the ones that takes a little longer to get approved for some reason. She doesn’t understand why. She said the fastest approval comes with Humira. She said when we ask for that it flies right through. What the heck? Why would that be? I do have a “conspiracy thought nature”. Something smells funny with that statement. Could Humira be in cahoots with the insurance companies? Sheesh.

Anyway. Side note. I have been taking the 9 mg of budesonide before bed each night. about a week ago I switched to taking it first thing in the morning. I think that has helped my days.

He said in my appointment yesterday to stay on that. He said we won’t start a taper off that until you start the maintenance injections of Stelara. I’m to stay on it until we get that going.
Posted 1/10/2023 9:43 AM (GMT -8)
My guess would be because Humira has been around a lot longer. Glad they are getting the ball rolling.
Posted 1/10/2023 9:50 AM (GMT -8)
Stelara is more expensive than humira. That might be why it's harder to get approval.

In terms of other medications, xeljanz and simponi are licensed for UC but not crohns. Not sure what the reasoning is for simponi, but xeljanz had some recent trials for crohns and the results weren't too good.

Many of our meds are approved for rheumatoid arthritis first, before they start researching IBD. I would guess that's to do with the size of the patient population (RA is larger than UC so more money to be gained by treating them...) but feel free to correct me if there's another reason.
Posted 1/10/2023 2:57 PM (GMT -8)
I just saw the first commercial on tv — that I remember seeing, maybe I just never noticed before — for Skyrizi for Chrohns. Did it just get approved for chrohns or is that old news?
Posted 1/10/2023 6:26 PM (GMT -8)
FlowersGal,

I haven't seen that yet. Let's cross our fingers and hope.

I wonder about people that aren't even allowed to try a medication because it's not typically used for that specific disease....(insurance decision) especially when there are so many medications for RA and IBD that seem to work for us. What if it would have worked for that one person? I admit I am biased because my insurance gave me such a hard time about Remicade when first diagnosed.

Rusty,

I hope you get a quick approval on the new med. I also saw a thread on dual therapy with this med on another thread ...

Crossing my fingers.

Clo
Posted 1/11/2023 5:39 AM (GMT -8)
My only insurance is now Blue Cross Blue Shield….PEBA. I got a short “robot call” yesterday from “Express scripts”. It said (paraphrase) “the drug that has been requested by your doctor, Stelara, is above your insurance allowance, but it it has been approved, until July (something) 2023”.

I called the nurse at my doctors office for clarification on that robot call. She did not answer. I got her voicemail and left her a detailed message. No response yet.

Could Stelara for me be approved that quickly. Does this mean I am good to go?
I guess I’ll wait a day and if I don’t hear from the nurse I’ll call her again. I don’t want to pester too much.

I havent called the infusion center with any of this. My doctor said not to do that until everything with the Stelara initial infusion is all set up and is good to go.
He said “you want to get that Inflectra infusion on January 23rd. Calling the infusion center might confuse things”.
I said “what if I get that Inflectra on the 23rd, can I go and get the initial Stelara infusion immediately after?”
And he said yes.

But, I didn’t ask, but I am guessing, if somehow the Stelara gets set up for me before 1/23, I guess the Inflectra dose appointment will get cancelled.

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Post Edited (Rusty Barr) : 1/11/2023 5:42:50 AM (GMT-8)

Posted 1/11/2023 6:03 PM (GMT -8)
I can't tell for sure either if you are approved for Stelara. Do you have a patient portal, if so give it a day or so & send an email asking if you have been approved. Another thought too, if you have a patient portal start looking for your biopsy report.

If you are approved & scheduled before your Inflectra infusion, I think it would be canceled.

Hopefully this gets sorted out fast.
Posted 1/11/2023 1:20 PM (GMT -8)
Sounds like it was approved. I have BCBS and the approval is usually pretty quick. Definitely follow up with doctors office again if they don't get back to you soon.
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