Entyvio not really working

My 14 year old Dominick has not responded well to anything! He just had his 5th entyvio infusion, and we are discouraged. He is complaining of severe pain in his stomach every few hours. He has not been in remission since his diagnosis last October. Doctors are considering adding another medication with the entyvio. He is not responding to prednisone any longer. Uceris was mentioned. Does anyone have any suggestions? We are not giving up on entyvio, we are trying it every 6 weeks now and holding on to hope.

Also, he has lost too much weight and is never hungry. We are trying to remain gluten free, possibly SCD. HOW can I put some weight on my child!!!

Thank you,
Concerned mom:(

I'm with IPoop, give it the 1+2 punch with Imuran. I started Entyvio with a Uceris bridge, I'm 100% confident that the Uceris helped me hang on while Entyvio started taking effect. Maybe it just needs the extra temporary steroid kick? Idk, all good things to discuss with the doc.

*EDIT* If he isn't responding to pred, there's a very good chance he won't to Uceris. If you try imuran and feel like you cannot hang in there with current entyvio infusions remicade tends to be a fast acting biologic from what i've read and heard. What other meds is he on? If you're looking to pack on weight maybe supplement/cook with olive oil & fish oil.
http://www.ncbi.nlm.nih.gov/pubmed/15795419

Post Edited (TheITIS) : 9/17/2015 11:29:08 AM (GMT-6)

If the scd is not helping him than maybe abandon it so there are some more tasty options for him to enjoy
Some ways to gain easy calories is swapping water with fruit juice as it's loaded with calories.
Eating very fattening ice creams ( avoid ones with carrageenans as those irritate a lot of people)

Did he ever use mesalamines? If he does not have a reason to avoid them maybe supplement with both oral and rectal route mesalamines.
Imuran or 6mp are also good options

Good luck

Thank you for your responses. We have tried Delzicol, 6-mp (liver levels became toxic), remicade (no response), . He responded to delzicol for a really short period of time, but he was also on prednisone at 40mg. He has been on prednisone for almost a year with short tapers. I am unfamiliar with Imuran. I will mention it to the doctor. The Dr. also mentioned methotrexate, my son just doesn't want to have weekly injections and she isn't a fan of the oral form.
As for the SCD it is so difficult to say if it is working. He is currently in a flare, so until he is in remission I just can't say.

Imuran is very similar to 6mp, which you've tried and received high liver toxicity. In fact, Imuran becomes 6mp once it's in your body. If 6mp didn't work, I'm not sure Imuran would be much better.

One interesting thought though, is that Allopurinol+6mp combination can often enable you to reach therapeutic levels without receiving liver toxicity issues. That might be something to discuss with your gastroenterologist... as it could help.

Methotrexate is a very strong immunosuppressive medication, and it's true there isn't a lot of efficacy studies of it with uc. No-double-blind studies, just open label. So, it is a big unknown. NotSoSicklyGirl's sepsis episode because of metho is quite scary, near death situation. I don't know the odds of that occurring but it'd certainly give me pause, if it was recommended for me.

Dom353535 said...
Also, he has lost too much weight and is never hungry. We are trying to remain gluten free, possibly SCD. HOW can I put some weight on my child!!!(

When flaring, not having an appetite is common. However that's really bad because you need lots of calories, forcing yourself to eat is essential. SCD is a very restrictive diet and many loose weight while on it. So, I'd ditch it entirely if you haven't seen clear signs of it working, and focus on high calories. Bread includes a lot of carbs, unless you know he has a non-celiac-gluten-intolerance then you might reintroduce grain again because spaghetti, and bread are a very good source of carbs and might enable him to add needed calories. You likely cannot gain weight while flaring badly, I couldn't. However, high calories may slow or stabilize the weight loss (I drank whole milk, ate whole yogurt shakes with peanut butter mixed in, anything I could). I wasn't able to regain weight until I was 3-4 bms a day and even then it was a very slow process of half a pound a month with lots of extra calories a day. Why?, with more frequent diarrhea the body can't absorb nutrients properly as the mouth-to-anus transit time is extremely fast (often partially digested food is expelled, sorry if its TMI haha); simply staying properly hydrated can be a challenge.

It sounds like you are in a difficult situation, wait out entvyio and it could work for 14 weeks. However, in the mean time your son is suffering. It's possible that your son could be unresponsive to all uc medications, and that wait could be in vain. It's unknown. I think researching surgery should also be a part of the discussion (if it isn't already).

I have had 5 infusion of entyvio they made me very sick with diarreah and over gas and bloating, bleeding , so my doc put me on cipro and flagyl combo and I'm doing so much better! I'm stopping entyvio thought its hasn't helped. Another antibiotic I have is rafaximin. Everyone is so different, my body has done well with antibiocs (I mean no c diff) but I take align probiotics with them too. Facebook warriors is good for entyvio support and questions. I hope he feels better soon. Hugs.

Hi, did you get on Facebook warriors? They are very helpful.

I asked to belong to facebook warriors today.
The pain is coming from the lower abdominal area. Below the belly button, and yes they come for a short period of time and feel like stabbing