Why are doctors still using 5 Asa medications as first line for Crohn's?

[kimmidwife]

I keep hearing from people on this forum and now today from someone whose daughter was diagnosed with Crohn's about their kids being put on 5 Asa medications such as pentasa or Lialda as a first line of treatment. It has been proven through multiple studies that these drugs are not strong enough to put people with Crohn's into remission. They do work for people with UC but they work better in the large bowel where UC occurs vs the small bowel where Crohn's occurs. I just can't understand it. I mean when I worked in the Medical profession I was always going to conferences, reading professional magazines, and taking courses to stay fresh in my field. I just don't understand this and I find it upsetting. I am sorry I had to vent.
Here are a few articles addressing this:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0014872/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3131170/#!po=9.25926

 

[vonfunk]

I think the main reason is because compared to the next level drugs they are relatively harmless. Everyone is different and some people can go into remission using them, trying them may prolong the initial flare, but I think many doctors are attempting to reduce any long term effect that the heavier drugs might have on a person, especially someone who is still still growing and developing.

I might be out of line because I don't have kids, I was diagnosed as an adult, but having gone through almost the entire cycle of medication and knowing what the various drugs did to me with a fully developed body I can understand why a doctor would try to get a child under control with the least amount of damaging medication as possible.

 

[my little penguin]

Because for the 20% that it works for they call it good .
The higher successful drugs don't really help a larger number .
Mtx I believe has only 33% success rate and 6-mp remicade etc might be 40%
I have to look up the numbers again.
It really wasn't very high and even if you get remission the odds of staying there more than a year goes down % wise for each drug so no guarantees.

They just need better drugs that work longer .

 

[kiny]

I used it for a long time with success. I think it's normal that not everyone agrees, there are many many fomulations of 5-asa with very different release mechanics, there are even 5-asa enemas. Often people with crohn's disease do have inflammation in the colon, being able to directly apply 5-asa on inflamed tissue is why it's used in the hospital I go to. No other CD medication allows you to do this. It's a relatively safe medicine too.

 

[theOcean]

5-ASA (Pentasa in particular) worked for my father, who had mild Crohn's. It was completely ineffective for me, though, and I have severe Crohn's and my new GI stopped me and put me on more heavy-duty medications immediately (Humira, Imuran, etc). I guess it just depends on your Crohn's and its severity, I suppose. Another friend of mine with mild Crohn's says it works really well for him, too.

 

[Patricia56]

Might help, unlikely to hurt...

 

[Axelfl3333]

I,ve been on pentasa for a log time but thought it very little at the beginning but it actually has helped me,fingers crossed it continues to do so,I only have mild/moderate crohns so I,m fairly lucky.

 

[DustyKat]

While it is true that 5ASA’s effectiveness in Crohn’s is questionable at best they do in some cases work as a stand alone maintenance treatment. I personally think if they are going to be effective it would most likely be in an adult with mild disease.

Since the presentation of Crohn’s in children tends to be more severe and difficult to treat I don’t think the 5ASA’s should be used as a lone treatment in this cohort.

The other thing to consider is the qualifying criteria that exists in different countries. For children it can be easier to jump straight to the biologics but for adults it is often built into the system that trial and failure of medication below the biologics is required before approval is given. Pretty much the step up approach, although a starting point of 5ASA’s wouldn’t be a requirement an entry level of the immunosuppressives would be.

 

[kimmidwife]

Dusty,
I have to agree with you. And my biggest worry is that a lot of the studies seem to show they allow healing visually but then when biopsies are redone they are still showing microscopic inflammation and if left untreated this will continue to do harm. I am worried that doctors are allowing themselves and parents to possibly be lulled into a false sense that the child is in remission when in truth they are not and microscopic damage is continuing to occur.

 

[Mehita]

Then you've got pain in the butt parents like myself who are (were) uneducated and terrified and refused the scary 6MP. The dr knew he needed to be on something so as a compromise, convinced me to try 5ASA. If I only knew then what I know now...

For the record, neither 5ASA or 6MP did anything for him and now he's happily cruising along in the Remicade boat.

 

[griffin123]

When my son first got diagnosed his pedGI in Portland OR wanted to start at the bottom of the medicine pyramid. She said it was better to start on the meds with the less side affects and the insurance companies like it better that way too. We saw her for 5 months and when we moved to Idaho my son was on pentasa. The lower meds on the pyramid did not help my son at all, I feel we wasted 5 months on nothing. His new pedGI in Idaho likes to start with the top meds and work your way down once you have the crohns under control. My son is now on remicade and so far so good. I wish his old GI started with the more aggressive meds then maybe my son would have gained more weight and grown more in the last year then he did.

 

[kimmidwife]

Griffin123,
It seems to be from what I am hearing that people whose kids go to tertiary care centers that are connected with Universities and schools of medicine are going right to the stronger stuff or the top down approach. Those living in areas where that is not available and going to doctors who were trained several years back all seem to go with this bottom up approach. We have to figure out a way to make the care better for everyone. I know there is this improve care now initiative for IBD. I am hoping maybe that will help.

 

[my little penguin]

For us - insurance requires all lower level meds be tried first before any approval can be given for upper level meds. So regardless of the new step down plan DS had to prove each lower level drug failed him first.

 

[hawkeye]

Mine was used in conjunction with prednisone (diagnosed at 17 - this was about 23 years ago). The 5-ASA was started after being on prednisone for a few weeks and then Imuran was added about 6 months later.

 

[DanceMom]

For us, I think Pentasa was the perfect place to start. My daughter's diagnosis has always been questionable and I'm sure she's not the only one in that position. It is difficult to justify jumping to something like Remicade without a "slam dunk" diagnosis and unfortunately many kids aren't "slam dunks".

 

[kimmidwife]

Danced mom,
For someone with a questionable diagnosis yes that would make sense. But for those with definite Crohn's the fact that studies are showing over and over that these drugs don't control the underlying microscopic inflammation then it would make sense to go with the better drugs. I mean I 100% agree these better drugs are scary. I was terrified to put my daughter on Iumuran when I read about it but then we hear about the long term affects of untreated Crohn's and this is even worse.

 

[Ktomakin]

Looking back sometimes I wish other medications were tried with my son first, he has been on Remicade (and only Remicade) since he was almost 4, (for 3 1/2 years now) I understand his symptoms were so bad we needed to act fast, but often wonder if anything else with less side effects would have worked just the same...He has been in remission since starting the Remicade and we often wonder how long he will be on it for, and if he needs to be on such a strong medication. We are very grateful the medicine works so well, just get curious, I guess.

 

[DustyKat]

@Ktomakin :ghug:

Although our experience is somewhat different to yours I can certainly empathise with your feelings and the what ifs.

My daughter was diagnosed on the operating table so going the medication route wasn’t an option for us. As time passed I often wondered what Sarah’s life would be like if she had been diagnosed in a more timely manner and we had been given the chance to try medication, any medication.

As it was 4 years later my son was diagnosed. His symptoms were very mild, they had only been noticeably present for a week and he was diagnosed with two weeks. As much as it sucked I thought well at least this time we can do meds and he would avoid what Sarah went through, but it wasn’t to be. He very quickly developed complications, within 3 weeks of diagnosis, and surgery just as quickly became our only option.

Of course I can’t say that had Sarah’s pre diagnosis journey been different that surgery too wouldn’t have been the outcome but I guess deep down I do think my question was answered.

Oh for a crystal ball!

Dusty. xxx

 

[gotumtum]

Another consideration I suppose in adults - females esp is the possibility of becoming pregnant, and the pregnancy profile of these medications

 

[Brian'sMom]

Also, all the mild cases that the 5asa's help probably don't come to a forum like this. We are all the severe cases!!