Is anyone taking Pentasa?

[TeenyYogini]

Hello all,

I am newly diagnosed with Crohn's of the small bowel. I have been on 6 mg of Entocort for 5 months, with pretty great results. Since I don't want to put my body through long term use of steroids, I am now tapering off of Entocort and weighing my new options.

Is anyone still taking Pentasa? Most everything I find on the topic seems to be from years past. I am wondering what the current take on Pentasa is.

My doctor is willing to do a 6-12 month trial of Pentasa, though she isn't very confident in its effectiveness. Her preference would be to go right to combination therapy, Imuran + Humira for one year. I would like to explore "milder" options first, as my disease is still considered to be "early progression". I would like to combine traditional therapies with alternative therapies. I have been following the SCD Diet for over six months now with great results.

If you have any thoughts to share, I so appreciate it! :heart:

 

[Scipio]

Pentasa is primarily a drug for ulcerative colitis rather than Crohn's. It is commonly prescribed for Crohn's, but the research data supporting its use is rather thin. Recent publications have shown that it is little or no better than placebo. Plus, Pentasa reduces inflammation only on the inner lining of the gut, but Crohn's inflames the gut through all layers, leaving it vulnerable to damage from deep layer inflammation.

Taking all this together tends to make me agree with your doctor's lack of confidence in its success. You may well need something stronger and more effective for Crohn's than Pentasa.

 

[eneg16]

I was diagnosed with Crohn's a week and a half ago. My doc put me on only Pentasa as I have an abscess right now and need to have that cleared up before I can be put on anything else. I really don't notice a difference with the Pentasa. Maybe it takes longer than a week and a half to kick in but I'm really starting to questions the effectiveness of it. He only told me that it will reduce inflammation, and not what type of improvements I'll be able to see myself. Hopefully I see some changes soon but I'm doubtful.

 

[ronroush7]

They started me on Pentasa and then switched me to Lialda

 

[Ally1234]

I have been on pentasa since I was diagnosed with crohns in February. It was explained to me that it was to soothe the inflammation on the surface. I am also on prednisolone and azathioprine. I am not sure if i still need the pentasa.

 

[FrozenGirl]

You could try Imuran and pentasa first if you were really looking to avoid the biologics (though in all honestly they are very safe medications)

 

[JenS]

TennyYogini, What did you decide to do? I plan to talk to my dr about this drug today. I have had bleeding for two days

 

[ronroush7]

Consult with your doctor first.

 

[TeenyYogini]

I have decided to taper off of Entocort and find out what my new baseline is before deciding. My doctor is willing to do Pentasa or Imuran + Humira, I can take my pick. I am following the Specific Carbohydrate Diet and taking Turmeric Curcumin and having a lot of success. I would like to see if I can go without medications for a while. They'll always be there if I need them. Best wishes Jen, sending you love!

 

[my little penguin]

The problem with doing no meds is you can go from mild to moderate /severe when inflammation is not kept under control
Symptoms can also be silent .
Ds was on pentasa for a month at dx ( his was mild )
It did nothing
We watched him get worse and his bloodwork increase for inflammatory markers

I can say at dx I was determine that Ds wasn't that bad and very afraid of all meds.
No one says you know what I really want to take these meds with all possible side effects
All parents want to fix crohns with diet .
Only one has that I know of after 6 years .
The only proven diet to fix inflammation is EEN ( exclusive enteral nutrition) formula only no foods .
This is equivalent to steriods

Leaving crohns untreated or under treated can go badly fast

Tagging Crohnsinct
Optimistic uses EEN and scd combo for her kiddo

Good luck

 

[Lizzie]

I've just finished a few months on pred followed by Entocort and as of today I'm taking Asacol, ie same drug as Pentasa. The reason for this is that I've refused biologics (that being my GI's preferred course of action.) I'm hoping the Asacol works - I know the research findings are not brilliant but I think they indicate some benefit for Crohns Colitis, which I have. Fingers crossed!

 

[ronroush7]

I've just finished a few months on pred followed by Entocort and as of today I'm taking Asacol, ie same drug as Pentasa. The reason for this is that I've refused biologics (that being my GI's preferred course of action.) I'm hoping the Asacol works - I know the research findings are not brilliant but I think they indicate some benefit for Crohns Colitis, which I have. Fingers crossed!

I hope the best for you.

 

[TeenyYogini]

Thank you to everyone who chimed in and supported me in my decision regarding medication. Once my Entocort taper was complete, all of my symptoms returned - not to the degree that they once were - but they were all definitely present and accounted for.

I have decided to go ahead with Imuran + Humira as recommended by my doctor. I am glad that I tried going medication free so that I could identify my baseline and feel confident about next steps.