Pentasa never offered? Remicade, 6MP, methotrexate questions

[Momtotwo]

I am reading all I can find about the drugs from Crohn's treatments. We have a choice between Remicade with methotrexate or 6MP with methotrexate. Maybe Remicade without methotrexate also. It is overwhelming and we need more guidance from the ped GIs but they seem to be leaving it up to us.

I noticed Pentasa mentioned frequently. That was never offered to our child. Any ideas why? I will ask next week, but I wonder why others had different med options.

If your child is on Remicade...was it your child's first drug? Any pretreatment given such as solumedrol or benedyl? Is methotrexate used with it?

Thanks.

 

[gemling]

I know that Pentasa is not considered to be very effective at treating crohn's. I am on it, but I am also on Azathioprine (a varient of 6MP). My IBD Pharmacist said I could discontinue it if I wanted to as she doesn't think it will do anything due to where my Crohn's damage is located. But I am going to continue taking it while the Azathioprine starts to take affect (it can take 3 months to be fully effective).

I don't have any experience with Remicade, but I know that a lot of US ped GIs like to try a top-down approach to get children into remission ASAP. I'm sure there will be plenty of other people who can offer advice though. But I think you should also sit down with your GI and discuss the pro's and con's of each approach before deciding.

 

[Maya142]

My daughter was put on Remicade and methotrexate and Pentasa when she was diagnosed with Crohn's. Her case is a bit different since she was already on biologics as she has a form of juvenile arthritis, so we just switched to drugs that would treat both the Crohn's and the arthritis. That said, I'm very glad her GI uses the top-down approach because she had scopes and a pillcam last January that were mostly clean.

Remicade is by far her favorite biologic - she likes the infusions much more than the weekly Humira shots. She is given Benadryl and Tylenol before infusions but to be honest, I don't think they do much. We discontinued Methotrexate (because it made her nauseous and dizzy for almost two days after the shot) last summer but it helped a lot. Many kids tolerate MTX just fine though.

M discontinued Pentasa for a couple of months when our insurance was refusing to pay for it, and nothing really happened, so I really don't think it does much for her. She is on Sulfasalazine now, which is similar to Pentasa but that isn't doing anything at all, so we will discontinue it soon.

Good luck!

 

[CrohnsKidMom]

I asked our GI about Pentasa, but he said it would not be effective for my son's disease. His CD is in the jejunum of the small intestine. Apparently Pentasa is more effective if the patient has UC, or CD of the large intestine. Some GIs use a step down approach, starting with the biologics, and some GIs use a step up approach starting with aza or 6mp. Our GI usually goes the step up route, depending on the case. My son tried aza, or Imuran, but could not tolerate it. He is now on methotrexate injections and doing well. All the best to you!

 

[my little penguin]

Most studies show pentasa is not effective as a monotherapy for crohn's.
Pentasa can be added to other therapies if only a little boost is needed.
Most ped Gi equate taking pentasa for crohn's the same as taking aspirin for a brain tumor.
It's not going to hurt much but won't help a lot by itself either .
The latest research shows using a biologic early gives your child the best chance at avoiding surgery and getting into remission faster - 6-mp/Mtx by themselves do not change the disease course or surgery only biologics do that .
Add Mtx/6-mp to remicade makes the biologic more effective and the child less likely to build up antibodies to remicade - making it ineffective .
DS tried pentasa for 30 days right at dx while we waited for a second opinOn since he had no visual signs of the disease just microscopic ( biopsies).

He went from mild symptoms to worse . He immediately switched to EEN /6-mp at the second opinOn appt.
This was prior to the publishing of the current studies on biologics .
Remicade was a miracle drug for my child .
It let him be a kid again.
Something pentasa , asacol, pred, 6-mp, Mtx could not accomplish for over a year .

He started remicade at age 8 and we never looked back .
Sounds like your Gi is up in the current research and literature - that's a good thing
Good luck

 

[malorymug]

My son's dr. Told us Pentasa wouldn't be a good choice for us with crohns in small and large intestines. He also showed us studies.

 

[Momtotwo]

have i mentioned how much i love this forum?

 

[Momtotwo]

my little penguin- if you don't mind sharing, do you live outside of the US? EEN was not mentioned by either doctor we saw (large, local teaching hospital and BCH).

 

[malorymug]

Me too. Not sure what I would have done without this group in the last month. Gone crazy, I suspect

 

[DustyKat]

Ditto to what has been said about Pentasa and the 5ASA’s in general.

The drug was originally designed for use in those with UC. Over time different formulations of 5ASA were developed that allow for initial release in different parts of the GI tract: Pentasa is released throughout the small and large bowel, Salofalk in the terminal ileum and large bowel and Asacol in the large bowel.

Studies suggest that 5ASA’s as a monotherapy for Crohn’s are pretty useless. That is not to say it isn’t effective for some but they are few and far between and generally adults. Unfortunately Crohn’s in children tends to run a more severe and complicated course which the 5ASA’s just aren’t strong enough to handle.

My own son was not long ago commenced on Pentasa in conjunction with Imuran. I was dubious about it but the GI was able to pull up a couple of studies pertaining to his particular situation, that being the maintenance of remission following ileal resection. Now we are talking very small benefit here, about 2%, but in view of the severity of Matt’s disease following diagnosis the GI felt any gain was worth it. Matt agreed and stated he doesn’t mind taking tablets so it was a no brainer and it was commenced.

You will find that the US doesn’t offer up EEN as a first line treatment for children nearly as often as it is offered in other countries, actually it is pretty stock standard elsewhere. Perhaps this is starting to change a little?
We have discussed this anomaly before and it would seem there is a belief amongst doctors in the US that it is too hard for children to comply with but I am sure with your health system there that cost is also an issue, Prednisone is bucket loads cheaper.

Dusty. xxx

 

[my little penguin]

We live in the us.
The "big" 2nd opinOn Gi wanted DS on pred plus 6-mp cheap easy compliance etc....
I read about EEN on this forum - pulled a few research papers and called our gi on the way back from the 2nd opinOn appt.
Our gi had only read about EEN but never actually did it.
He knew DS would stick with it since he had a very restrictive diet for years prior due to life threatening food allergies.
Most docs don't bring it up since most parents think its too hard or insurance won't cover it (aka too expensive)...,
It can make biologics more effective as well
But it typically can not be used as maintence since symptoms return once food is reintroduced.
EEN also tends to be less effective in adults and aslo less effective the second time around .

Chop had a powerpoint on the use of EEN in Ibd
Plus tons of papers in it to share with your gi from the parents research section.

 

[my little penguin]

http://www.chop.edu/export/download...er/IBD_Day_2013_Whats_Hot_in_IBD_Research.pdf

 

[Jmrogers4]

When my husband was first dx'd over 20 years ago the main drugs were either asacol or pentasa. He started with asacol and moved to Pentasa within the first couple of years with symptoms the whole time and several hospital stays and fistulas and abscesses. They were never strong enough but there were not really other options. After a 3rd perianal abscess he was put on Imuran about 7 years into the disease and has been virtual in remission since then with no hospital stays and no fistulas or abscesses.
Imuran did not work as well in our son and at times Pentasa and Apriso have been added to try and give the Imuran a boost and it never really made a noticeable difference and since they were quite expensive they were dropped. Remicade has been his miracle drug so far and only the last time (5th infusion) was somuderal added to the mix as the GI says it helps against antibodies and they have been doing it alongside all their remicade infusions. We talked about Benedryl and he said it would help with symptoms of a reaction but not necessarily keep reactions for happening which I was thinking I heard that from MLP already as he was saying it.
EEN was not offered to us either at first but when my son absolutely refused Prednisone his last flare the GI offered it as we had already talked about it thanks to the forum Jack told him he wanted to do EEN.

 

[Jane and Nick]

We have been on Salofalk (pentasa) pluss prednisolone and now AZA. I am not sure Salofalk has helped with his gastro issue but I do believe it has helped with his joint pain. I feel it's harmless enough to take and has seemed to have done more good than bad.
Good luck.

 

[PaulS]

Does anyone have any experiences of getting remecais infusions in Malaysia ? Just curious, thinking of taking a job in Kuala Lumpur, Malaysia. Thnaks

 

[superzeeman]

Really Pentasa, according to my GI, is no more effective than a placebo for Crohns. Most likely your Doctor knows that and didn't even mention it. I was on it and it did nothing for Crohns.

 

[afidz]

It's not a placebo for Crohn's, but it isn't very effective either. Dustykat has already explained is not meant as a monotherapy for Crohn's but it can be a great supplemental med. Keep in mind, Just because it doesn't work for one person doesn't mean it won't for others.