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Ulcerative Colitis
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Posted 6/17/2015 2:47 PM (GMT 0)
Hey all.
I start entyvio next Tuesday (with 15 mg methotrexate once a week) and they're basically thinking this is my last hurrah before surgery. Was recently hospitalized for a week and steroids got me stable, but god, do i hate them!!

Since the hospital I'm trying really hard to exercise, hydrate at least 2L of water a day, eat well, meditate, do daily yoga, etc... and so far so good, but as I'm tapering my pred I'm noticing the lovely bleeding slowly creeping back at 30 mg. Today i started 25mg (tapering 5mg a week). So, entyvio is hopefully coming into my life right on time. Basically my questions are...

Any information I should know about entyvio? Common side effects? I've researched but I find UCers always know what's vital about meds ;)...
Any personal experiences?
Does the fact that its only ten years old mean I should be weary about long term effects?
Any lifestyle suggestions i can try while on it that will help it actually work?
Should i be scared that I'm on so many meds while starting entyvio? (See below)


Thank you lovely people,

26 year old female. Currently on...
40 mg of pred beginning. Currently at 25 mg (only 5 more weeks! Yay!)
15 mg methotrexate once a week + folic acid daily, except on methotrexate days.
Nightly corto enema for two weeks.
Vancomycin x 4 a day until August 4 (contracted cdiff in hospital. Joy.)
Iron. Vitamin D drops. Multivitamin. Bio-K Plus probiotic.

* Last and final remicade infusion was May 6 2015. Tests showed that even though my body was swimming with remicade it was virtually useless for me :(

Post Edited (mlena89) : 6/17/2015 8:58:19 AM (GMT-6)

Posted 6/17/2015 4:38 PM (GMT 0)
I am on Entyvio now and sadly have not responded (20 weeks). I suspect we might stop it soon and try Remicade since I never tried that. I didn't see any side effects either. According to the studies ~50% had good response to Entyvio compared to ~25-30% of the placebo group. There is certainly a decent chance you will benefit but sadly I haven't heard a lot of good personal success stories about Entyvio yet.

As far as long-term we really don't know yet. The drug was only approved last year and people were only followed for 1 year, I believe. Perhaps we started studying it 10 years ago but it is effectively only one year old. In theory it targets the gut specifically and should have less systemic side effects, but it is hard to know without more long-term studies. There were minimal side effects in the published studies.

I personally would worry more about long-term colitis than long-term Entyvio resulting in well controlled colitis.

Good luck I honestly hope it works wonders for you!
Posted 6/18/2015 12:31 AM (GMT 0)
I've been on Entyvio since October. If you want great info, I'd recommend joining the private Facebook group Entyvio Warriors. Many here who are on Entyvio belong to that group. The organizer has extensive files of user reported side effects and successes.
Posted 6/18/2015 1:30 AM (GMT 0)
My mayo clinic doctor said wait four months before I quit it, told me to give it more time. So I'm giving, two more 8 week infusions. I'm not seeing results, bummer, but I believe they will come. Side effects, gut issues, diarreah, heartburn , major heartburn , I started on Prilosec.

I get pred too 40mg drip into my is so I don't build antibodies, suggested again by mayo clinic doctor.

Have faith, this maybe you key and it will help you. I failed remicade and humira
Posted 6/18/2015 1:39 AM (GMT 0)
I have been on Entyvio since November 2014, just had my 6th infusion And my UC is under control. Less trips to the potty, more energy and I was able to gain back some much needed weight.
Only side effect so far is a case of itchy hives after my last infusion , we will deal with that before my next one , probably with with Benadryl
I also belong to Entyvio Warriors on Facebook .
Ask to join them a lot of good information for you turn
Posted 6/19/2015 1:20 AM (GMT 0)
It does take awhile to kick in, as did its previously approved cousin(Tsabri), so the sooner the better. My daughter was delighted by its quick infusion time, and limited down time. No premeds or issues. The other meds you take should Only help bridge until it kicks in- fingers crossed- think positive thoughts.
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