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Entyvio for 17 year old- Ulcerative Colitis


Sun, November 10, 2019 10:54 AM

My 17 year old daughter has been diagnosed with L sided ulcerative colitis and has been on Lialda for several months - she is still having symptoms including blood in stools, stomach pain (has been in this flare for 6+ months). The MD is recommending Entyvio as next tx option. Does anyone have any experience with this medication? I was hoping not to have to go to infusions, but we are becoming frustrated with lack of progress. Thank you-

FPO klava
Joined Nov 10, 2019

Sun, December 13, 2020 1:11 AM

Reply posted for jackiedp.

Follow-on to previous post:  to be a little clearer, my son had been on Remicade for 6 years, 3 years in remission -- it was the length of time on Remicade combined with being in remission for 3 years that made her consider the move to a targeted biologic (not systemic like Remicade).  The fact that my husband and I often asked about long-term use of Remicade in the pediatric population -- our concern was obvious -- might have factored into that but she would not have recommended anything that she couldn't back, clinically.    

FPO Isa
Joined Jan 9, 2020

Sun, December 13, 2020 1:02 AM

Reply posted for jackiedp.

Hello -- I am sorry, I missed your post!  Remicade put my son into clinical remission and he had been there for 3 years so at that time his GI was weighing the benefits and the risks of staying on Remicade.  She said that she would be comfortable with him switching to a targeted biologic and recommended Entyvio.  My husband and I were only to glad to follow this advice, my son was a bit nervous because he was doing so well on Remicade.  That said, he had started to read-up on Remicade himself and what he read made him a little anxious.  I have Crohn's and have been on Remicade for 2 yrs after resisting anything beyond ASA treatment for over a decade and ended up having a small bowel resection.  I feel significantly better and have learned that chronic inflammation is not good for the body, I kind of wish I had done it sooner.  I try to keep the low grade anxiety at bay by focusing on the quality of life...meditation helps as well. :-)

FPO Isa
Joined Jan 9, 2020

Thu, March 05, 2020 9:43 AM

Reply posted for klava.

I haven't had any problems with Entyvio except it has triggered my psoriasis  which works its way up and down my arms and legs and belly and the itching drives me crazy

FPO charbs
Joined Oct 31, 2016

Wed, March 04, 2020 6:31 AM

Reply posted for Isa.

Question for Isa...

My son, age 14 was just diagnosed with moderate to severe CD about four weeks ago.  He has been on 5 ASA and it has done nothing for him.  His doc now wants to go directly to biologics and asked us to choose between Remicade and Humira.  I'm curious to know why, if you son did well on Remicade, did he or his doc choose to change his treatment? 

FPO jackiedp
Joined Mar 4, 2020

Tue, January 28, 2020 10:16 PM

Reply posted for Tlcunning.

Wow I am sorry to hear that. My daughter had her first Entyvio  infusion two weeks ago and has the second one scheduled for this Thursday. So far no big changes. Unfortunately has had a cold/sinus infection but probably just that time of the year. I hope your daughter responds well to the Remicade. It is Certainly hard to go through this phase of life not feeling well and so many symptoms. I'm not sure if your daughter is in college,  but makes me nervous when she goes away this fall. Best to you-

FPO klava
Joined Nov 10, 2019

Tue, January 28, 2020 10:09 PM

Reply posted for klava.

Our 18 year old daughter was diagnosed with UC this August. No entry level meds completely resolved bloody stools. Steroids didnt work either. We had just discussed entyvio versus renicade and decided to go with entyvio when out of nowhere a crazy flare, her first one. Bowel movements 20 plus times per day all blood, vomiting, fever, inability to hold any food down, dehydration and hospitalization. We were stunned at how fast it hit her. We were then forced into Remicaid due to the emergency situation. I'd get it scheduled now, before an emergency where you are forced into Remicaid which has scarier side effects but works faster.

FPO Tlcunning
Joined Jan 28, 2020

Sat, January 18, 2020 10:58 PM

Reply posted for klava.

Hi, sorry I haven't been on here in a while. It took a lot of fighting from my doctors to get the insurance company to approve! But, no I don't really have any sides effects at all, except for right after the infusion, I get really tired. I would definitely try it! And avoid steroids if you can, I was on for 9 months and developed severe osteoporosis from them and severe inflammation. I now have 14 spinal fractures. It doesn't happen to most people, but i would still avoid steroids if you can.

FPO pnriley04
Joined Nov 6, 2017

Thu, January 09, 2020 8:23 AM

Reply posted for klava.

Hello, I just joined the forum and saw this post.  My 17 year old son was diagnosed at age 8 with CD and started Remicade when he was 10.  :-/   They suspected he had had it for ~3 years by the time he was diagnosed and had significant slowdown in growth because of it.  So frustrating!  I have CD and I persisted with his pediatrician about the possibility that he might have it -- eating behaviours and stomach complaints were familiar to me -- but he didn't have diarrhea, quite the opposite.  That was the same with me and just like me, he was diagnosed after ending up in emergency when things had gotten really bad.  The Remicade worked -- his growth returned and he has exceeded amount of growth they thought possible, his quality of life was normal -- he said he felt like he didn't even have a disease, and it put him into clinical remission.  He has been in remission for 2 years and so his GI had to weight the risk/benefit to the meds and decided to switch him to Entyvio which has a better safety profile.  He has been on it for 6 months and has had colds and respiratory issues on a regular basis and significant joint pain.  He is now feeling anything but normal.  He may be one of the 8-12% that experience these symptoms.  We will be having a discussion with his GI in February about next steps if the symptoms don't improve.

All that said, there was a constant state of low-level anxiety when he was on Remicade.  It's a black label drug and there was no long-term use of it in the pediatric community -- he was so young when he started it.  I feel better that he is on Entyvio but my heart breaks to see him putting up with the side effects. of Entyvio.  There is no good solution re meds -- every single one of them comes with something.  

From what I've read, UC is harder to treat with many of the meds.  You may need go through a series of different treatment options before finding one that works.  Your journeys are just beginning -- I wish the best for you and your daughter.  

FPO Isa
Joined Jan 9, 2020

Thu, January 09, 2020 12:14 AM

Reply posted for klava.

HI! I also did entyvio for a bit when I was 17, I am 21 now. I loved it, the infusions were much shorter than other infusion medications and I personally did not experince any side effects. At the time I did entyvio i was on the Specific Carbohyrate Diet, but you don't have to be on a diet to take entyvio. Like with any other immunosuppresent drug I did get sick more often, but that usually just consisted of getting a cold multiple times a year that lasted a little longer than normal, nothing serious. 

FPO aleahmd
Joined Feb 11, 2019

Wed, January 08, 2020 9:57 PM

Reply posted for pnriley04.

For some reason, I am just seeing this! Thank you for the reply. We are waiting on the authorization for entyvio ..she has been in sulfasalazine and lialda, 1 short course od prednisone (which helped). Have you had any side effects from the entyvio? Do you follow a special diet? Or have concerns about infection? Thank you so much!  Kris

FPO klava
Joined Nov 10, 2019

Mon, December 30, 2019 10:49 PM

Reply posted for klava.

I have not tried that medicine but I am on SUlfasalazine its alot of pills a day but i am in remission and feel pretty good. I still have stomach pain but my dr thinks that is something else. I don't have any bloody stools and my stools are normal.

FPO Chicluv35
Joined Dec 30, 2019

Thu, December 26, 2019 5:56 PM

Reply posted for klava.

Hello! i know this is late but I thought I would respond anyways. I am 16 and i have been on entyvio for over a year now. It has put me in complete remission. I was diagnosed 2 and a half years ago and I started off on remicade and it did nothing for me. So i switched to entyvio and it had been amazing, I definitely recommend!

FPO pnriley04
Joined Nov 6, 2017

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