Pentasa and Still Flaring

[gadgetninjette91]

I've been on Pentasa for my Crohn's (jejunum and ileum) for the last three weeks and am frustrated that it's not helping me more than I'd like it to. It did help at first and kept me solid for a good bit but I've been flaring again for the last few days (I attribute this to stress and not enough sleep which is usually what triggers my flares no matter what I eat). I'm going back to the doctor tomorrow, should I ask about any other meds while I'm there? If so, any suggestions?

 

[gadgetninjette91]

Bump

 

[nitty]

Hi! Sorry, just seen this post.

Pentasa may help to keep you in remission once you get there, but you will probably need something stronger to stamp down your symptoms first.

I tried Pentasa alone first and, like you, I had an initial improvement but it didn't last. I then tried another 5-asa with the same result. I realised I needed the big guns. I took Prednisolone first (40mg reducing over 8 weeks) which was a massive help, and whilst on that I started on Azathioprine. This kept me in remission for nearly three years and the only reason I've started flaring again is because I tried dropping one of the meds (the 5-asa).

I was reluctant to try any stronger meds at first as I was only a mild case. Unfortunately, it started to get worse quite quickly and I soon was desperate to step up to stronger meds.

Long-term inflammation, even low-grade, is not good for you in the long-run.

What did your doctor arrange for you?

 

[24601]

Since we've discussed this in depth in PMs I'll just repeat this briefly here for anyone else reading for whom this is relevant but -

Pentasa won't treat disease in your jejunum or in the higher part of the ileum as it only releases in the terminal ileum and colon, so yes, absolutely, you need to be on other meds.

 

[Mr chicken]

^^^^yeah that

Ds was on own rasa for a month at dx
Did nada

Most Gi not all basically say 5-Asa for Crohns is like giving aspirin to a brain tumor patient
Not going to hurt much but not going to help much either

Ds was on it while waiting a second opinion since he didn't present with classical Crohns

 

[worriedboy]

Very few Crohnies are lucky to control the disease with 5-ASA.
If you are flaring, you are not among those very few; talk to your GI ASAP, he might want to step up the treatment.
Dont wait to long, try to keep on top of things.

Good Luck.

 

[gadgetninjette91]

Since we've discussed this in depth in PMs I'll just repeat this briefly here for anyone else reading for whom this is relevant but -

Pentasa won't treat disease in your jejunum or in the higher part of the ileum as it only releases in the terminal ileum and colon, so yes, absolutely, you need to be on other meds.

Par our PM's, I actually suggested some of the meds we talked about, my doc said to just be patient on the Pentasa because my inflammatory markers at my blood draw were "excellent" and come back in six months. I don't think that's right at all. I may go and seek out a third opinion from a specialist who knows what they're looking at.

 

[gadgetninjette91]

Hi! Sorry, just seen this post.

Pentasa may help to keep you in remission once you get there, but you will probably need something stronger to stamp down your symptoms first.

I tried Pentasa alone first and, like you, I had an initial improvement but it didn't last. I then tried another 5-asa with the same result. I realised I needed the big guns. I took Prednisolone first (40mg reducing over 8 weeks) which was a massive help, and whilst on that I started on Azathioprine. This kept me in remission for nearly three years and the only reason I've started flaring again is because I tried dropping one of the meds (the 5-asa).

I was reluctant to try any stronger meds at first as I was only a mild case. Unfortunately, it started to get worse quite quickly and I soon was desperate to step up to stronger meds.

Long-term inflammation, even low-grade, is not good for you in the long-run.

What did your doctor arrange for you?

My doctor told me to have patience with the Pentasa and come back in six months. But I can't accept that at all. She wouldn't put me on prednisone because I have a history of suicidal tendencies whilst taking it (I have had times where I had to go to the ER for asthma and every time I was given prednisone I felt horrible mentally). Probably going to seek out a third opinion from an IBD specialist.

 

[24601]

Hi! I understand where you are coming from and, as you know, I feel the same way.

Essentially your doctor is not treating your Crohn's disease anywhere other than the terminal ileum.

If you just had disease in the TI, it would still be right to discuss other meds but it would be a different discussion.

So this is really, to me at least, the same as someone coming to the forum and saying "I just got diagnosed with Crohn's and my doctor isn't giving me any treatment." It happens but rarely - and it never sounds like a good idea.

Here's the thing with inflammatory markers - they don't always reflect inflammation going on in the bowel.

And the reason you would want to start treatment even if you are in full remission is to maintain that remission. Crohn's disease is characterized by periods of relapse and remission but the goal is to prevent the relapses.

If she isn't clear that she isn't treating most of the inflammation in your bowel in any way then that shows a poor understanding and I certainly think another opinion from a better qualified doctor is in order.

Good luck!

 

[nitty]

I agree that you should keep trying to get this resolved.

My GI said that more and more doctors are adopting the 'top down' approach to treatment and getting people onto stronger drugs earlier. He said they have learnt this from the developments in treating rheumatoid arthritis where faffing around with mild drugs usually ended up with irreparable damage that then even the stronger meds couldn't manage to control, hence they started taking a more assertive regime from the beginning.

With regards to blood results, my bloods have never been outside normal ranges, and I think there are others on here who keep having to fight for treatment due to doctors who only look at the numbers on the page and not the actual person.

 

[gadgetninjette91]

I know it's a month later, but I figured I'd make a quick update in this area. I ended up moving back in with my mom out of state after a series of events including but not limited to my health getting worse. My new GI said that he "hates" Pentasa for Crohn's, and hate is a strong word. He compared it to trying to put out a wildfire with a squirt gun. Been flaring again just the last few days for seemingly no reason, my doc is having me do another colonoscopy on Wednesday to look at my ileum which I have to start prep for tomorrow. But it is looking like I will be taken off of this mediocre medication and looking at stronger meds. My new GI said he'd rather treat the patient than the test, he was very thorough and he listened to all of my concerns (also helped to bring my mom to my appointment to give him an outside perspective about how I've been doing). I called the nurse practitioner today who informed him I was flaring so he knows that I've gotten worse which is important for him to know. Thanks for all the help, I had a feeling this was not the proper treatment for me!

 

[nitty]

Great! Having a doctor who actually listens to you makes this all so much easier to cope with, and it sounds like you have finally found that.

Good luck with the scope. Hopefully soon you will be on the right treatment and feeling better again.

Let us know how you get on.

 

[teeny5]

That's great news gadget! My GI didn't listen at first when I told him a med wasn't working...went to urgent care and the on call Dr was like "why are you taking that?" and changed my meds that day to Entocort a sulfasalazine (I was on Asacol and Rowasa). I think as a maintenance med the 5 ASA drugs can work for some, but you need to get to remission first.

Let us know how the scope goes.

 

[gadgetninjette91]

Thanks, will definitely update after my scope. Hoping for the best.

 

[Kero]

Glad to have found this post. Was just about to come on and ask if there was something I was doing wrong because been on Pentasa for 3 weeks and no change to my symptoms. I have to wait for almost 2 months before seeing my GI again

 

[gadgetninjette91]

Glad to have found this post. Was just about to come on and ask if there was something I was doing wrong because been on Pentasa for 3 weeks and no change to my symptoms. I have to wait for almost 2 months before seeing my GI again

If you're like me and have primarily (or exclusively in my case) small intestinal disease, a 5-ASA won't do much. It helped my lower small intestine but my upper small intestine is a big mess, having a CT scan tomorrow (my 2nd) to see what's up. But yeah, a 5-ASA med alone is usually not enough to cover it. My doctor is talking about the possibility of biologics which are very strong meds but I'm being kept on the 5-ASA (now Apriso instead of Pentasa but same drug) because it hasn't done nothing, just hasn't done enough. Crohn's really requires meds that alter the way the immune system functions. Hope you have better luck soon.

 

[SumCiA]

I was prescribed Pentasa by my main consultant only to be taken off it by another doctor I subsequently saw several weeks later because in his opinion it is not very effective. If it works for some people then great but I'm getting the impression that more and more consultants seem to be looking to other drugs. I agree with gadgetninjette91, I suspect immunosuppressant's are the only way to go or steroids for more acute illness.