New to this whole thing...

[ruth613]

Hi there,
My son is 14, diagnosed w Crohn's 1/15, and I feel like he's been on so many drugs...remicade, methotrexate, lialda, folic acid, entocort...none of which did much...now we are weaning off prednisone and he began an entyvvio infusion...which isn't working yet. The only thing that has helped is the prednisone. I am totally new to this forum, so I hope I'm not asking the obvious...but I would love to hear from other parents who have gone through this with the 'big drugs' not working. His GI says he is a challenging case (not what I want to hear) and a slow responder. Ugh.

Thanks for reading. Glad to have found the support.

 

[crohnsinct]

:ghug: Sorry to hear this. It doesn't surprise me the lialda didn't work. It is pretty low level and not many kids respond to it.

I am surprised at the number of drugs you have been through in 8 months. I am sure you have good doc but our doc gives each drug a tad longer to work. For my older daughter she didn't reach remission with Remicade until 6 months out. My younger daughter was diagnosed same time as your son and we are still playing with Methotrexate and EEN and steroids to try to get her to full remission.

There are a few others here who have run through many drugs. Kimmidwife comes to mind.

My older daughter was steroid dependent. Have you thought about trying Exclusive Enteral Nutrition to help get the inflammation under control while waiting for Entyvio to work? My nephew is on Entyvio and it does take quite a while to kick in. EEN is a formula only diet for about 6-8 weeks. It works great at attacking inflammation, just as good as steroids and has the added benefit of mucosal healing so hands the drug a bowel in pretty good shape. You can either drink the formula, Boost/Ensure type thing or use a more broken down formula through a naso gastric tube.

There is a lot more about it in threads in the parents diet section and the treatment section. There is also a quick read book about it "Beat Crohn's".

Good Luck, I am sure others will be along shortly.

 

[GwensMom]

So sorry to hear he is still having problems after all this time. It sounds like your GI team is right on top of things and are trying to find the right thing that will work for him, but it does sound like he has been through a lot of meds. My daughter just started Remicade so unfortunately I'm not of much help when it comes to any knowledge about the 'big drugs', but there are others here who are very knowledgeable so you are in the right place! As a parent and caregiver though I can understand how extremely frustrating and helpless you can feel when nothing seems to be working and all you want is for your child to feel better. It is one of the hardest things for a parent to go through. Thinking of you and hoping that the Entyvio starts working for him.

 

[JOconnor]

I have been steroid dependent for 22 years even when on other medications. I have been on almost every medication available with no relief. The exception to this is that I was on Humira for 3 years and was able to greatly reduce my steroid dose and was steroid free for 6 months. When I started my MD told me it may take up to six months for the Humira to be fully effective. I am currently on Entyvio. I just had my 4th injection and am slowly reducing my steriods. The doc said some people see fast relief and for others it may take up to 6-8 months to see results which is what he is expecting for me since my disease has been so unresponsive to anything but steroids. It is scary and frustrating when you are young and the steroid side effects can be hard to deal with but tell your son to hang in there it may just take the med a little longer to start working. Often my doc weans me off prednisone very slowly when starting a new med and if the sx return they bump the dose back up for a bit and we try again after several weeks. This can be a slow process and frustrating but it keeps the inflammation under control while giving the other med a chance to kick in.

 

[DanceMom]

In our case, the IBD medications didn't work because she didn't actually have IBD. My daughter has an immune deficiency that presented like IBD....it just wasn't. Often people are diagnosed with IBD incorrectly when they actually have a more rare disorder. Just something to think about and possibly explore. Second opinions are always a good idea.

 

[crohnsinct]

Just came across this and thought of you.

http://www.ncbi.nlm.nih.gov/pubmed/26288002?dopt=Abstract

 

[Mehita]

Has he had his Remicade levels checked? Maybe he's burning through it too fast... many kids do. He might need a stronger dose or more frequent infusions.

 

[Maya142]

My daughter also needed a higher dose of Remicade (10mg/kg) and more frequent infusions (every 4-5 weeks) before it worked for her IBD.

I suppose if he has started Entyvio, that is no longer relevant, just curious if you tried changing the frequency or dosage. Did he try Humira too? Some kiddos who don't respond well to Remicade do respond to Humira.

Our children's hospital is using Entyvio too (mostly on teenagers). I believe some kids who have failed everything else are doing well on it.

 

[Lady Organic]

in the meantime of entyvio kick in, your son could try liquid diet as another parent suggested along with exclusion diet as described in the fallowing article:
http://www.researchgate.net/publica...hildren_and_Young_Adults_with_Crohn's_Disease
basically this diet excludes gluten, dairy, animal fat, processed meat, emulsifiers, canned goods and packaged good with a due date.
IBD-AID diet in my signature (link) is quite similar. both diets report interesting preliminary findings in research settings.

 

[ruth613]

Thank you all for your suggestions, thoughts and support. This is so helpful. Just a little more background...we went immediately to Remicade (4 days after diagnosis) because our doctor has seen great results. My son was what he called a "secondary non-responder"...(I think that was it), as he had no response for a while, either with his symptoms or bloodwork, then had a little response, then it went down again. We tried more frequent infusions at 10mg/kg. We had his levels checked and they were good...just he wasn't improving. His disease is primarily in his colon so the doctor thinks he may respond to entyvvio...although he went downhill after stopping the Remicade and starting Entyvvio at the beginning of the summer, so we put him on prednisone, which worked. Now that he's weaning off prednisone (down to 15mg) he is having more symptoms. I am anxious to see if his inflammatory markers are improving tomorrow.

The liquid diet is a great suggestion, and again thank you all so much for your kind responses.

 

[pdx]

Wow--you guys have been through a lot. I'm sorry it's taking so long to find the right treatment for your son.

My 13-year-old daughter was diagnosed about a month before your son, and she also didn't respond to Remicade at first. However, when she was tested, her levels were low, and when her dose was increased, she finally started to respond. I'm not sure that that would have happened without EEN though. Like some of the other kids here, EEN really helped her. By the time she was diagnosed, her body was very malnourished, and her intestines were a mess, so I think she really needed the nutrition and healing provided by EEN before the drugs could start working well. She also was on steroids (budesonide) and MTX to help jumpstart the Remicade.

Good luck. I hope the entyvio works well for him.