HealingWell
Search Close Search
☰

Starting Entyvio

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/4/2020 1:52 AM (GMT 0)
Update regarding my DD:
She will getting into next level medication-Entyvio tomorrow.
The FMT nor the oral lialda + enema did not give a good result.
From 125lb's she landed on 106lb's in this 7 months ordeal.

For prep: asked to take 2 tylenols and claritin or benadryl 1 hr before.
Part of me ready to go with the flow to have a normalcy in her and our life but other half of me feels defeated to give into biologics as she is young and single.

Am thankful to the forum and members here for sharing /discussing about Entyvio. Reading your posts educated me more than hearing from GI.
Have a question - is it possible once remission attained taper out from entyvio slowly and be on mesalamine? Did not get a chance to ask the GI and I guess GI's answer will be a no. Any hope?
Posted 6/4/2020 2:06 AM (GMT 0)
Don't think you should look beyond getting into remission for now...

Remission is the goal. Really hope entyvio does the job.

Maybe later on she will be so well that you can consider other options. Solid remission for a few years does allow options.

Take care.
Posted 6/4/2020 2:11 AM (GMT 0)
Thank you Ambling ! Appreciate your advice - Valid point !!
Posted 6/4/2020 1:28 PM (GMT 0)
Lialda is a mesalamine so if she did not respond to Lialda it is unlikely she will respond to others. Entyvio is fairly slow acting. Prednisone does not come at no cost but it might be something to try while waiting for the Entyvio to take effect.
Posted 6/4/2020 3:16 PM (GMT 0)
Is your daughter still on SCD? I was able to get off Remicade by following SCD. However, it was not what the doctor recommended, of course. I am having a mild flare right now, but it's nothing like what it was before. I think it's stress related.

However, when I started taking Remicade, it was the best thing to do. I was on it for a little over two years and never regretted it. I agree with the others, right now, the only things that matters is that she achieves remission.

Post Edited (Lili35) : 6/4/2020 9:42:53 AM (GMT-6)

Posted 6/4/2020 3:20 PM (GMT 0)
Bloom, you are having the normal fears that everyone has when it's time to move up to the next tier of medications. You & your daughter have not failed anything, the previous medications failed to help her.

Try to look at it this way, she's young & single & she deserves having quality of life. I would much rather see her get into remission than be as sick as she is right now. She deserves to be living well.

Take care.
Posted 6/5/2020 12:26 AM (GMT 0)
Thank you tiredofallthispoop, Lili35 and Straydog for your thoughts and replies. Appreciate much!

@tiredofallthispoop: DD's symptoms varies each day. Stool consistency wise there is improvement but not the pace GI wants. Lilada is helping her in a managable way but not in full swing yet.. mesalamine enema stops the blood and calms the rectal inflammation as her main problem was her rectal inflammation during this flare. GI so far did not say anything yet to stop mesalamine. I am guessing this will her coverage meds until entyvio kicks in.

@Lili35: I am so happy to know you were able to come out from remicade through SCD diet. Are you still in SCD diet?
Please do everything you can to stop this flare asap. That is one thing we learned during this 2nd flare journey. Wishing you a quick remission!!

@ Straydog: Thank you for your wise and sound advise- Totally agree - Good Quality of life is needed the most!!

Best wishes to all...
Posted 6/7/2020 3:13 PM (GMT 0)
3+ years on entyvio and so glad I went with it. I like that it’s “gut-specific” so is supposed to be a little less total immune suppressing. Also that the infusion time is quick — only 30 minutes. I do not take any pre-meds with mine. I have not had any side effects nor do I get sick more often. I do make sure to get my flu shot every year. I haven’t even had many colds — but I do start a regimen of Airborne when I get a sore throat.
Posted 6/7/2020 7:47 PM (GMT 0)
Much Thanks Flowergirl for your sharing! Gives me comfort and hope!
Happy that you don't need the prep meds. For DD they said the prep meds only needed during the loading doses.

Wanted to check- While on entyvio do you watch your food choices? Also do you avoid big gatherings?( before Covid).
Posted 6/8/2020 3:46 PM (GMT 0)
I do not have to watch my food choices. I am a big fan of white chocolate mochas from Starbucks and every so often when I have one I have to make a bathroom run. But it doesn’t happen every time. I do have them cut back the amount of flavoring as I suspect it’s the sugar content. But it doesn’t lead to cramping or anything — just a one time almost diarrhea. I had cut out dairy when flaring and have stayed with almond or coconut milk simply because I prefer the flavor. I don’t eat broccoli anymore because it gives me gas which is still uncomfortable. Other than that I eat pretty much what I want. I do try to limit sugar because I suspect that imbalances my gut for some reason — but I love my sweets so I don’t cut them out entirely.

Re: big crowds before COVID — not at all! Have been to Disneyland several times and Disney world once since starting entyvio! And I really feel like I have been less sick since starting it too.
Posted 6/9/2020 1:04 AM (GMT 0)
Much Thanks FlowersGal for your reply.
Gives me hope for long travel and gatherings...



Best wishes...
✚ New Topic ✚ Reply