Normal to be on Pentasa for Crohn's?

[artheta]

My understanding of Pentasa is that it works topically, and that it's not recommended for either inducing or maintaining remission. I believe I was initially told it had anti-cancer properties. Is that a normal reason to be on it?

 

[Scipio]

Pentasa is a better drug for UC than it is for Crohn's - for the reasons you mentioned: Works only on the surface layer of the gut and does not address the deep-seated inflammation of Crohn's. And the more recent publications have shown that this drug is really no better than placebo at treating Crohn's. But neverthless, for many docs it remains a commonly prescribed first drug to try - the first step in the "step-up" therapeutic process of tryng the cheaper, milder drugs first before moving up to the stronger and more expensive ones. So in that sense it is "normal," if perhaps regrettable, to be put on Pentasa.

More modern "top down" therapy of giving strong drugs first shows that you get a better outcome in the long run compared to the "step-up" approach. but unfortunately not all docs, and especially not all insurance companies, are on board with that.

 

[my little penguin]

So way back when (11 years ago ) my kiddo had a “working dx of crohns “ at the age of 7
His Gi placed him on Pentasa only
Since we were getting a second opinion at another hospital the Gi didn’t want to muddy any test the 2nd opinion doc wanted .
We were told at the time
Pentasa is about as useful for crohns as giving aspirin for a brain tumor
But so mild it’s not going to help much but won’t hurt either .
2nd opinion doc stressed Pentasa if it will work does does so in 30 days
My kiddo it did NOTHING
And he got sicker over 30 days
At the time I knew none of this and was throughly upset at both docs
Higher level meds come with risks yes
But so do lower levels drugs and at least the effectiveness is much greater for higher level drugs

my kiddo started biologics at age 8 -remicade after a year of stepping up on drugs (now almost 18) and hasn’t looked back
He currently takes Stelara plus mtx .

 

[artheta]

Thanks for the replies. I'm actually on biologics too. I just wondered about the benefits of being on Pentasa simultaneously. As you say though, it's mild... so maybe there's not much reason to question it.

 

[Kannassee]

It never did anything for me. I hated those huge pills.

 

[Hera]

I'm on pentasa, azatioprine and remicade at the same time. My colonoscopies were not very determinated and biopsies showed indeterminated colitis, but doctors are pretty sure that it is crohn because of the dispersion of the injuries. I thought that I was on pentasa because is not 100% secure that it is crohn but it seems is a treatment for crohn aswell.

 

[Kannassee]

Its really incredible that in 2022 there are still cases like yours.
They dont know if you have Crohns or UC……lol
That was the story of my life since 1995.
They did last year on me some Quest blood tests about whatever cereviceae, Panca, Anca etc etc and they diagnosed Crohns. It was called inflamatory bowel panel ir something like that. Maybe that would help you differenciate between those diseases.
Its incredible how many GI Dr. Dont have a clue about these diseases, specially older ones.
I agree these are really weird diseases to diagnose, but thanks God there is a big difference between 1995 and 2022

 

[Hera]

thank you for that interesting information. I've never heard about that. I looked for Anca and Asca on internet and it seems is related with IgA. In one of my blood test IgA was analised and the level was 1,5 ( normal 0-10) so it seems kind of low. Do you think something about it?

 

[my little penguin]

162045: Inflammatory Bowel Disease (IBD) Expanded Profile | Labcorp

Labcorp test details for Inflammatory Bowel Disease (IBD) Expanded Profile

www.labcorp.com

This is the type of blood test
However some are positive for crohns on the blood panel but don’t have crohns at all
Others are negative and do have crohns

we never bothered with the blood panel for that reason
Only becomes critical to know if it’s crohns or ulcerative colitis if they need to do surgery

hope the combo meds work soon for you

My kiddo was on asacol (similar to Pentasa ) plus remicade at one point early in diagnosis

he takes methotrexate and Stelara now

 

[Hera]

Thank you. I understand. In a case of colectomy seems very important to know, because I guess you should keep on drugs or not deppending of the illness.

 

[Kannassee]

I was

162045: Inflammatory Bowel Disease (IBD) Expanded Profile | Labcorp

Labcorp test details for Inflammatory Bowel Disease (IBD) Expanded Profile

www.labcorp.com

This is the type of blood test
However some are positive for crohns on the blood panel but don’t have crohns at all
Others are negative and do have crohns

we never bothered with the blood panel for that reason
Only becomes critical to know if it’s crohns or ulcerative colitis if they need to do surgery

hope the combo meds work soon for you

My kiddo was on asacol (similar to Pentasa ) plus remicade at one point early in diagnosis

he takes methotrexate and Stelara now

I did not know that the panels were not very accurate. My blood panel was positive for Crohns.....sort of......

I just took a look at my latest biopsy reports and it said UC....go figure.

My new Dr told me during the endoscopy in 2021 that it looked like Crohns. All the ulcerations were in the terminal ileum at the anastomosis site 25 cm from the ileocecal valve.

From 1995 to 2020 it was always: " it looks like UC but it also looks like Crohns."

I think its probably Crohns because Asacol, Pentasa, Mesalamine etc etc did NOTHING for me.
The only thing that worked was Remicade in lowering the Calprotectin levels.
And prednisone.